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My Journey through HT and RT

User
Posted 04 Jan 2023 at 19:42
My New Years Resolution was to document my journey through HT and RT on this forum which has been of so much help to me. I won’t go back as far as my diagnosis as it might be too much to catch up on, but will start at the point of treatment options.

I am hoping this might help others that haven’t started their journey yet, as well as helping myself by talking about it. I found that since joining my local Maggies Mens Cancer Support Group I am much more able to do this.

I’ll summarise 2022 as a single reply and try and keep up to date from now on.
User
Posted 15 Jan 2023 at 13:59

What a Roller Coaster ride this is! Yesterday I was wiped out, so fatigued, my muscles were all sore, I even kept falling asleep during the Manchester Derby! Worst day I’ve had in a long time!

Today I’m bouncing with energy, been out along the beach with my grandsons and then brunch with them..They bring me so much joy.😊

Why? Don’t know? Did I do too much the day before? Was the news about the delay in treatment causing me stress? Effects of the acupuncture wearing off?

One thing I’m learning though as I’ve said before….‘Don’t let this disease and treatment define you’. Just accept you’ll have bad days and just rest, chances are the next day you’ll feel MUCH better.

sorry if I’m boring anyone with my feelings but I think it’s important as mental health is such a big factor in getting through this!

User
Posted 22 Mar 2024 at 16:05

Got some great news today, just had a call from my CNS who has said that my Onco is happy for me to stop HT.
He also thinks my leg pain is nothing to do with PCa(as you’ve all told me anyway😊) and I’ve to let my GP deal with it.

So my last Prostap Injection(hopefully for ever🤞) will be 4th April.

I just need now to find out what’s happening with my legs! GP appointment on April 1st and hopefully he’ll arrange whatever tests are needed.

I am SOOOOOOOOO HAPPY!😊😊😊😊

User
Posted 04 Apr 2024 at 12:21

Yeah! I’ve made it!

PSA <0.1 (undetectable)
Testosterone <0.2….non existent🤣🤣🤣

I know Undetectable doesn’t really mean as much for us HT/RT guys but I really feel I’ve reached a magic milestone.😊

Last (ever🤞🤞🤞) HT Jab today and I can’t tell you how happy I am about that.

I must say Fife NHS is very well organised…I was told not to worry, they are not forgetting about me, I will get a letter every 3 months to remind me to get a PSA test and then a letter with the result. Going to be an anxious time every 3 months but I’m going to focus on getting my ‘body’ back.

A wee celebration drinkie tonight I think.

Thanks to everyone for their support on my journey, it’s been amazing and I will continue to be an active member of this forum.

User
Posted 04 May 2023 at 20:40

Well, that’s it….all done and dusted. 20 out of 20 completed today and quite emotional.
Took in some bubbly and chocs for the team and they were soooo appreciative….lots of hugs all round. I can’t speak highly enough of them, so understanding and compassionate, made me feel completely at ease and helped me through this.

I am feeling absolutely fantastic and looking forward to getting on with my life.

I’ve learned a lot and think it’s worth a separate post on Hints when having Radiotherapy which I will post soon…been on the champagne and out for dinner tonight so will do it over the weekend.

Derek.

User
Posted 04 Jan 2023 at 19:42
My New Years Resolution was to document my journey through HT and RT on this forum which has been of so much help to me. I won’t go back as far as my diagnosis as it might be too much to catch up on, but will start at the point of treatment options.

I am hoping this might help others that haven’t started their journey yet, as well as helping myself by talking about it. I found that since joining my local Maggies Mens Cancer Support Group I am much more able to do this.

I’ll summarise 2022 as a single reply and try and keep up to date from now on.
User
Posted 05 Jan 2023 at 14:07
Your treatment is very, very similar to what I had coming up on four years ago, Decho. My PSA was 32 on diagnosis. I had six months of HT, then (in my case) 32 session of RT with "whole pelvic" treatment to zap undetectable spread, then another 18 months of HT. I too found Sertraline very helpful in dealing with the mental side of being diagnosed out of the blue.

Four years later, and things are fine with me. My PSA is stable at just over 1, and life is good.

Wishing you all the best for your RT,

Chris

User
Posted 28 Nov 2023 at 19:54

Today in a last ditch effort to help my aching/stiff joints I had my first session of acupuncture. I had 6 sessions exactly a year ago to help with my hot flushes and it really helped. And the acupuncturist is confident he can help with my joints as well. I have to say when I came out I felt great, the stiffness had eased and I was able to walk better. Also my energy levels and my mood were much improved…I’ve felt recently that I’ve lost my mojo a bit but today I have felt so much more positive and energetic.

I have my next session in 2 weeks time and look forward to it. The guy is really good, some acupuncturists just stick the needles in and leave you for an hour, but this guy doesn’t, he talks to you and is very interested in how you are feeling, it’s like a therapy session.

So, I am hoping that this makes things easier and also it gets me through the anxiety of my next PSA test on 8th December.

User
Posted 05 Jan 2023 at 08:15
June 22nd 2022: meeting with consultant urologist at the Victoria Hospital in Kirkcaldy where I was told that surgery was not an option because of the danger of leaving some cells behind requiring Salvage RT.

 I also signed the consent form for HT and discussed Options on RT, which were 20 sessions of RT plus possible an HDR Brachytherapy boost. I didn’t find him very empathetic and helpful,  perhaps because surgery had been ruled out. Anyway, at least I am now signed up to start treatment. Given Bicalutamide tablets to take for 4 weeks with my first RT injection in 2 weeks.

 

July 6th 2022: Here we go…start of HT.  Appointment at the Vic for first Prostap3 injection. Injection in the left side and CSN explained that they do it on alternate sides.

Fairly uneventful, no pain or discomfort after it and feeling fine.

 

July 22nd 2022: Meeting with Oncologist at Western General in Edinburgh. Much more forthcoming than the urologist. He informed me that HD Bracytherapy Boost in addition to RT had been ruled out because my flow rate was not good enough. I mentioned that it wasn’t long since I had my biopsies when I had the flow test, so it was agreed I wou”d have another flow test ASAP.

Then he spring something new on me…the option of having 37 fractions rather than 20, where they would treat the whole pelvic area to include the locally lymph nodes, as well as the prostate and Seminal Vesicles. This completely threw me as nobody had mentioned this before. He indicated that the side effects would be worse but I could reduce the chance of recurrence,  although there was no clear evidence that this would be the case. I said I needed a short time to think about this with my wife to discuss and it was agreed that I would contact my CNS it’s my decision.

 

July 24th 2022:

Contacted my CSN to say that I had some questions I would like answered by the Onco. Also to arrange another flow test.  She said she would contact the oncologist. She tried this several times without success. I get a bit frustrated because I am ready to make a decision on treatment, I just need my questions answered to make that decision.

 

Aug 1st 2022: Severe anxiety kicked in, finding it really difficult to get out of bed in the morning. I have to sit with my wife for a considerable time just to get out of bed. She is so supportive to me, don’t know how I’m going to repay her. It gets better as the day goes on but it’s so debilitating, I just can’t function at all.

 

August 4th 2022:

After reading this forum and other peoples experiences, it appears that Sertraline has greatly improved their mood so I’m going  to phone my GP and ask to try it. He thinks it’s a good idea so prescribed me 50mg to be taken once per day. He warned me that it will take several weeks to be fully effective.

 

Aug 7th 2022: Due to fly out to Fuerteventura to our holiday home today but just can’t face the airport and flying.  Luckily it was a Ryanair flight and didn’t cost much so will just have to right it off. 

 

Aug 14 2022: After a few days on Sertraline I feel a bit better and feel I can cope with the journey so we rebooked and fly out to Fuerteventura today. A bit apprehensive but all went well and got our place in paradise to enjoy some sunshine and relaxation.

 

Aug 18 2022: A letter arrived from The Western with another appointment with the Onco…..on 25th November, 3 months away. I have no idea why I can’t have an appointment sooner so decide to speak to the CSN to see if it can be brought forward. I just want to make a decision and then get on with the treatment ASAP. I’m now thinking it may be next year before my treatment starts, which will be after 6 months on HT….maybe that’s no a bad thing?

 

Aug 25th 2022: Returned to Scotland after a good rest and chill. Palpitations are now greatly reduced but still felt really anxious during the holiday. Didn’t do much, just couldn’t face it and still find it difficult to get out of bed in the morning. 

 

Mid September 2022: Anxiety greatly improved. I feel much happier all round despite still now word from the Onco or answers to my questions about the treatment. I’m really impressed with the Sertraline, it really has helped me deal with the situations which would have brought on anxiety.

hot Flushes still a real problem though. I’ve read some reports that Sage Leaf can help so I’m off to Holland and Barret to get a supply.

 

Oct 5th 2022: Second Prostap Injection, this time in the RHS of the belly. PSA down from 36 to 3 which they are very pleased with. Spoke to the CSN about having to wait until 23rd November for another appointment and said she would follow it up and and try and get it brought forward.. I’m getting really frustrated now…it’s coming up for 3 months since my meeting with the Onco and still haven’t managed to speak to him about the treatment.

Spoke to the CSN about the Sage Leaf and she said they can help some people. I haven’t really noticed much difference, perhaps they have eased slightly but not enough to give me back enough QOL, will give it a bit longer and then investigate acupuncture.

 

Oct 23 - 9th November

Another trip to Fuerteventura- this time feeling much better and able to enjoy it. Again didn’t do much, lots of walking and enjoyed some lovely food and drink as well as sunshine. The weather is amazing, sunny every day with no wind which is unusual for Fuerteventura.

Flushes still an issue but no worse in the heat. They seem to start by a change of temperature. One day in the local Mercadona, I went into the freezer to get a bag of ice and WOOSH! Sweat pouring off me, quite embarrassing.

Had a great time though, hope to be back soon.

 

Nov 23rd 2022 - finally meeting with the Onco. This time two of them for good measure. I asked them the questions I had prepared 3 months ago. From the answers they gave, although leaving the choice to me, it was clear they were pointing me in the direction of 37 sessions. My wife and I looked at each other and immediately nodded to each other without any hesitation….37 sessions it is and I’ll deal with the side effects if and when they occur. Decision made at long last….very relieved about this and feeling good about it. They said it would be the New Year before treatment started but I might have the gold marker seeds implanted and the CT Planning session before the end of the year. 

 

Dec 6th 2022: First acupuncture session. Hoping this might help with the hot flushes. Really enjoyed it and came out feeling good. The acupuncturist was a really interesting character and very interested in me and how I was feeling.

 

Dec 7th 2022: Letter arrived posted on 28/11/22(thanks Royal Mail!) saying my gold marker seeds were to be implanted on the 8th December, the day after I got the letter. Still at least don’t have time to worry about it.

Seed implant 8th December

CT Planning scan 15th December

Radiotherapy starts 16th January.

 

Dec 8th 2022: appointment at Wester General to have Gold seed implanted. Biggest problem was finding. Parking space. All went fine and they inserted 3 seeds, one on each side of the prostate and one at the top, forming a triangle. Certainly felt them going in but not bad at all. Given 3 day course of antibiotics to take and told not to lift anything heavy for a few days. Felt slight discomfort in my pelvic area for a few days but it passed quite quickly.

 

Dec 14th 2022: Second acupuncture session. A lot more needles this time but still comfortable and again came out feeling good. I haven’t noticed any real difference after the first session but I know it can take 6 sessions to work.

 

Dec 15th 2022: CT Planning Scan. Western is good when attending for Cancer Treatment as they have designated parking and a security guard directs you a free space. Had to use an enema on arrival then drink 3 glasses of water and wait 30 minutes. After drinking the water I managed to convince myself I wasn’t goi g to be able to hold on that length of time, so I downloaded solitaire to my phone and completely forgot about the time until the radiographer called me in for my scan. All went well and I was on my way home within 30 mins.

 

Dec 21st 2022: PSA Test in prep for my next Prostap3 injection. Because of Christmas, won’t get the results until the 30th December. Hoping it might be done below 1 from 3 last time. I now know what Range anxiety is and it’s nothing to do with EVs!

 

December 28th 2022

3rd acupuncture session. After my last one I noticed a distinct improvement for a few days but then it tailed off a bit, but maybe it’s beginning to work?

 

Dec 29th 2022: Tried Viagra for the first time ever and it worked! Only problem is with No Libido, what do you do with it? Weird! Much prefer just being close to my wife with lots of cuddles and outercourse.

 

Dec 30th 2022: PSA result back. Down to 1.6 from 3. I’m a little disappointed it didn’t fall down below 1 but maybe I’m just being too optimistic?

 

Dec 31 2022: flushes have definitely improved, less severe and frequent. They now mainly only happen due to a change in temperature.

This has been an awful year for my wife and I and not just because of my diagnosis, so many personal tragedies and sad events. Here’s hoping 2023 is better
User
Posted 20 Jan 2023 at 21:36

Originally Posted by: Online Community Member

Decho 

I find it frustrating that your oncologist view is different. I want to believe mine. jeez Louise !! 
Can they both be right? I know I have cancer in many nodes I have seen the PET scan so why would he think 20 is okay and yours does not ??

this is where the fear comes from I think 

N

 

N, you will drive yourself round the bend! You seem to be imagining RT as a linear thing - limited PCa with no lymph involvement = 20 fractions, PCa with lymph nodes zapped = 37 fractions. That is just not how it works - if it was like that, we would see men with very small tumours having 10 fractions and a man with a really big prostate having 50! Weirdly, the opposite can be true - a man with advanced PCa may have 1 or 2 sessions just to reduce some bone pain and a man with a T3 / T4 having 5 or 6 fractions at 6Gy! 

Some oncos will use 20 fractions at 3Gy / 3.2Gy for all radical RT - some will only use it for men with T1 / T2 but perhaps at a lower dose than 3Gy - some will only use it for adjuvant or salvage RT. 

Some oncos will use 37 fractions (or even 39 in Decho's onco's case) at 2Gy for all men - some will use 37 fractions only for men with pelvic node involvement - some don't do 37 fractions at all now (for example, because of changes to procedures since Covid and the drive to reduce the number of visits each patient makes to the hospital) 

Some oncos will run 30+ fractions for a man with local spread - 20 or 25 fractions delivered as normal and then a few additional fractions aimed just at the nodes or just at the heaviest load in the prostate.  

 

You are trying to rationalise the random ... oncos have different preferences and NHS trusts may also have developed different approaches. The fact is that 37 x 2Gy (74Gy) delivers more or less the same amount of killer rays as 20 x 3.2Gy or 6 x 6Gy and a personalised computer programme determines how much killer dose is delivered to which bits of the pelvis. Your onco and Decho's onco can therefore both be right!   

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jan 2023 at 01:43

😂🤔🤯

The serenity prayer

"God, grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference."

Very useful when dealing with Government departments on a regular basis! 

 

Edited by member 21 Jan 2023 at 01:44  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Feb 2023 at 09:45

I hope you can get the radiotherapy started Decho, 8 months on HT seems long enough before starting RT. 

Ido4

User
Posted 16 Apr 2023 at 16:06

Hi Ian086 and Robin Hood,

it’s been an incredibly emotional and difficult 12 months for me with lots of ups and downs….but I am sure you both know exactly what I mean! Without this forum and Maggies I would have really struggled to get through this. At first I could not talk to anyone except close family about my fears but now I am happy to and share my experiences with everyone. Maggies Mens Cancer Support Group at the Vic in Kirkcaldy have just been so instrumental in helping me to talk openly about things…I was very reluctant to join because I thought it would be a bunch of guys sitting around being thoroughly miserable, but it was exactly the opposite, we actually have quite a laugh at ourselves…and if someone is feeling down or emotional we can all help support them. I really look forward to our meetings and am even going to try and change my zapping time on Friday just so I can attend. I get so much from the meetings and always come out feeling better.

There are people on this forum who are incredibly knowledgable and have helped enormously, so if I can share my experience to help someone else then I am so pleased.

I’m not kidding myself that the next 3 weeks are going to be easy, but I’m going in with a positive attitude and going to try and keep active as I think it’s so important…..just back from a cycle ride stopping at Aberdour Beach, Sands Cafe for tea and cake and sitting outside watching the people on the beach was wonderful and I feel so alive!

I will keep you posted good or bad(I promise!) but good luck to both of you when your time comes around.

User
Posted 21 Apr 2023 at 21:22

Second week down, 11 sessions in total and still going well. Also had a meeting with the clinical nurse to check on how it was going which was nice. Enemas finished now although I didn’t really mind them and it gets rid of any excess gas. the staff are just wonderful, will do anything to accommodate you and so supportive and friendly.
My energy levels were down a little this week but still managing my 10k+ steps a day. Going out on my bike tomorrow so will see how that goes. Still Managing to keep to my daily routine which was different today because I changed my appointment time to the morning to allow me to attend my Cancer support Group.
I went to my  Maggies Mens Cancer Group this afternoon which always helps me keep motivated.
No unpleasant side effects as yet, perhaps a little more wind after treatment. I’ve bought some pads just in case it’s a little more than wind when I’m out exercising!

Next week going to be more challenging I guess but onwards and upwards and I’m on the homeward stretch!

User
Posted 23 Apr 2023 at 15:47
Hi Robin Hood,

As Lyn says every hospital seems to offer its own advice. I was told just to eat my normal diet as they feel that changing your diet for treatment may cause a change in bowel habits, which they don’t really want. I wasn’t told anything about avoiding alcohol and have had a glass of wine on Friday and Saturday evenings, but never the evening before treatment……I have a gin instead!(lol, only kidding!)

Ask at your CT Planning Scan, they will keep you right

Western General in Edinburgh ask you to use an enema during your CT planning scan and then during the first 10 sessions. They say that after that you won’t need them!

And just today I learned a very valuable lesson….YOU DONT NEED THEM!

I’ve been keeping a the same routine daily with walking, and one coffee WITH caffeine(I know I shouldn’t but it gives me a buzz).,I usually incorporate my morning coffee during my walk. Today yards from my front door a had the urge for a bowel movement. I thought….no problem, just get in the house quick and all will be ok. WRONG! I had absolutely NO control over it and ended up…well I think you can guess!!!!. Now, I could have got very upset about this but I just laughed (as I’ve learned to do during this ordeal) , cleaned up the mess with help if my VERY understanding wife.

So,

1. No more caffeine for foreseeable future!

2. I’m going to eat less fibre but will confirm this with my RT team tomorrow….they are just so helpful

3. If I’m going out for a walk I will wear pads. I couldn’t find a Tena Men that would really do the job but the Attend F6(available on Amazon). This goes from Front to back and am sure it will hold enough should I have another accident from either end. You may feel a little embarrassed at having to put one of these on the first time but what the hell? They are not noticeable and will do the job!

Oh and I’ve got a red raw arse which I will be asking them about too.

But this hasn’t stopped me….I feel great and still bursting with energy even without the caffeine! Would be going out on my bike this afternoon if I didn’t have such a tender rear end🤣🤣🤣

I hope some of this helps…..and good luck with your treatment!

User
Posted 29 Jun 2023 at 18:23

Well today was both interesting and infuriating!
I decided that if I wait for the NHS to take action on what I believe was Peyronie’s disease it would be too late …and today this was confirmed. It is so important to me to have sexual function back that I decided to go private a pay for a consultation at the Spire Murrayfield who specialises in Peyronies.. And it was money very well spent! He was excellent and confirmed that if I had gone through the NHS, urology would probably have referred me to him anyway and I would have got an appointment…..after at least a year!
I showed him my photo of my wonky Willy(he was pleased I had them, I think it’s best to delete them from my phone now🤣🤣🤣!) and then he examined me and straight away confirmed that I had scar tissue at the base of my penis. He could feel it through my flaccid member …I said I had tried to check for it but didn’t know the correct way to do it so he guided me and yes, I could feel it too.

He mentioned surgery but said this couldn’t be done until the disease was stable, I am still at the active phase. He also said the success rate is not that good. TBH I am not really interested in surgery anyway. He then explained about the physical devices that could be used from imedicare, firstly the somacorrect and also the ResponseX, which is a traction device and looks like something out of a torture chamber😱

I asked about a collagenase/Xiapex injection which was on his profile and had great success rates. He said yes, but the company that manufactures them has pulled all stock from Europe, so not an option I am afraid.

now for the bit that made me REALLY angry😡 Having read on this site about people getting pumps on the NHS he said….yes, if you have Prostate Cancer and are being treated for ED,  you can be prescribed the Somaerect, but as this is Peyronie’s disease, the Somacorrect is NOT available on Prescription in Scotland! 
So if I’d had RARP I would have got the treatment I needed to help with sexual function(I don’t have any at the moment as it’s too painful)  on the NHS, but because I have Peyronie’s disease I can’t get it…they have tried for other patients! So I have 2 choices…

1. I either pay £700 from my own pocket to buy the devices
2. I quite possibly lose my sexual function for evermore.

I’ve been back in touch with imedicare(who have been excellent) and am going to have a video consultation with them. I will see what they say about getting them on the NHS. I’m also going back to my GP once he has received the letter from the consultant and put pressure on him. If I don’t have any joy I will just have to take the hit on my wallet and buy it myself.

Those of us on HT/RT have so much to deal with  the side effects that affect our QOL and I am doing SO much to try and overcome these…I knew impotence was a a possibility and can accept that, but when there’s treatment available that could help restore my sexual function , which is available and does help those who have surgery and have ED,  but similar treatments are not available for those with Peyronie’s disease, almost certainly caused by HT/RT, it does seem a tad unfair.


Sorry for the rant…I will keep you posted

User
Posted 06 Jul 2023 at 21:31

Well today marks a milestone, exactly ONE year on PROSTAP and I had my next injection. The CNS looked up my file and said ‘I see you’ve to be on this until May 2025!’ 😟 Oh well, let’s not dwell on it, much better to just get on with  life and be proactive in tackling the side effects.

Today was a happy day for me, I bought a basketball hoop for my 7 year old grandson who has suddenly become a fanatic like his mum and dad, an I can’t wait to see his smiling face when he sees it in the back garden….need to build it up first though!

The joint ache and stiffness is still there, but as recommended, I have started swimming and that DOES make a HUGE difference…it really does ease it, and now when I get into the pool I can actually swim quite well, a lot slower than before but quite acceptable. I made the mistake of going to the pool early afternoon today and it was full of screaming kids having a great time  on their summer holidays. Fortunately they still have the 3 swimming lanes so was able to do 30 lengths as well as some water aerobics. Also going regularly to the gym to try and build up my muscles. Tomorrow I’m out on my ebike so I KNOW that will be a happy day…as long as it doesn’t rain!

One of the guys in my Maggies Grouo was sent to see a specialist about his joint ache and he was prescribed something called DermaCool. It contains 5% menthol and he says it’s made a big difference. I ordered some online so will see if it helps, anyone else ever used this? I’ve used Mineral Ice before(discovered it in the USA) which contains 2% menthol and you can certainly feel a difference so it will be interesting to test out this product as it’s much cheaper.

User
Posted 13 Aug 2023 at 17:36

Originally Posted by: Online Community Member

It sounds like you have a very good support centre at your Maggies.

Andy, Maggies has been a saviour to me…I just wish I had not been so stubborn and gone along earlier. I thought(as I’m sure many do) that it’s ‘not for me’. How wrong I was!

User
Posted 17 Aug 2023 at 18:05

PSA result just in. 0.3 which I think is pretty good considering my starting point of 36 at diagnosis.

Been on a very short fuse this week waiting on the result but much happier now😊 Fortunately I have a VERY understanding wife❤️

Onwards and Downwards🤞🤞🤞

User
Posted 06 Oct 2023 at 07:18
When it was no option to not start HT I picked Decapeptyl after following others on the drug. I think it’s been very kind to me but I do have mainly leg/knee pain and good libido after 3 yrs on it. Hot flushes aren’t to bothersome. Zero weight gain or moobs. It was me in webinar , 6 months in the making , and I’m glad it’s over. Shame no time to answer the huge amount of incoming questions. I decided to protect my identity in case the neighbours were watching 😀
User
Posted 06 Oct 2023 at 08:27

Ah Chris, I did wonder if it was you…you came across very well with some very useful personal experiences for those just starting their journey. Yes, it’s a shame it couldn’t have been longer.

I’m fascinated and puzzled that you have good libido on Decapeptyl. I thought ZERO libido was more or less a given on all those drugs. Oh to have my libido back😞 when I cuddle up to my wife in bed I still feel the love for her, even more so than before, but just no desire…I find it quite sad 😢 

Im working on my knee issues and will continue to fight against it💪. Hot flushes are much better now with me.

All the best,

Derek

User
Posted 11 Dec 2023 at 17:11

Got fed up waiting on my GP surgery to get my PSA results…and getting past the receptionist just to be told ‘Normal’😡 Phoned urology direct and they had the result….0.1 down from 0.3, in the last 3 months. So, I’m really pleased!

Also had an unltrasound in my neck as it’s tender to touch but all clear…think it might be too much work in the gym!🤣🤣🤣

Onwards and Downwards!💪💪💪💪

Derek

User
Posted 04 Jan 2024 at 16:34

HT Jab number 7 today, 5 to go so I’m on the homeward stretch. It’s really good that the CNS gives you the injection as it’s good to have a chat with her, they like to do this in Fife to keep an eye on how their patients are doing.  She said that getting down to 0.1 was an excellent result, but confirmed thT there was no < symbol in front of it…maybe next time🤞
She didn’t however hold out much hope for ending the HT early although she did say if the side effects were seriously affecting my QOL they might consider this….but it would have to be with the Oncos agreement. If I can get me knee ache under control it will be much easier to keep going and I’m pleased to say that using Voltarol twice daily on them has really helped. I’m going to try and get a prescription for this.

Off for 3 weeks tomorrow to Fuerteventura to escape the Scottish winter….swimming, walking and eBiking …and of course a little sitting in the sun(shade) and a few mojitos down by Corralejo Harbour….heaven😊

User
Posted 05 Jan 2024 at 12:43

Decho

Great news.  Fife to Fuerteventura!! Have a warm relaxing time. Do you find Voltarol better than Ibuleve?

Pratap

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 05 Feb 2024 at 15:20
I’m 57 this year and am on HT for rest of life. I’ve been on it exactly 3 yrs this month. I have serious joint pain and bone pain but I do get by mostly. Then given you’re 10 yrs older than me …..

Not sure about supplements but I take a cod liver capsule every day which includes Omega oils and Vit A and D. So maybe that’s helping me mate

User
Posted 05 Feb 2024 at 15:58

Thanks Chris, Yes I know,  I follow your journey. Do you mind me asking if your joint pain has stabilised or is it getting steadily worse? That’s my fear. I get by too but in the mornings I’m hobbling about, then as the day goes on it gets better especially if I keep moving. As soon as I sit down again for a rest, my legs start to seize up again and ache.  I just find it so frustrating that I can’t find something to help. It’s not that I’m inactive either, today I went swimming in the morning and the gym in the afternoon. Some people have suggested I’m doing too much but when I stop being active it gets worse.

I rattle with the number of supplements I take each morning including Cod Liver Oil but maybe I should try and different brand(Castrol GTX?🤣🤣).

Thanks again and all the best for the future.

Derek

Edited by member 05 Feb 2024 at 15:59  | Reason: Not specified

User
Posted 22 Feb 2024 at 16:26

Hi Decho,
Do be careful with Turmeric. With various benefits becoming associated with turmeric, and increasing number of people have decided that consuming large amounts must be good for you, the deaths from liver failure caused by Turmeric have significantly spiked.

I make a point of eating salmon which I find helps my joints. I discovered this by chance 20 years ago. I'd bought a side of salmon for a family meal which then didn't happen. I was faced with eating this salmon myself before it went off. At the end of that week, every joint pain had gone.

Have a good holiday.

User
Posted 22 Feb 2024 at 20:02
Prostate Cancer Research UK says salmon is one of the best things you can eat to maintain a healthy prostate - they also identified in research that it can slow down progression in advanced PCa cases. They were ambivalent about turmeric but Trevor_Boothe exceeded all expectations re longevity with an awful diagnosis and his wife was convinced that it was down to the turmeric - she was putting it in everything. TBF, his diagnosis and heart problems meant that liver damage was probably the last of his worries
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Feb 2024 at 21:31

Dietary advice changes from year to year. Eggs have changed between good and bad at least four times in my life. Well I say 'Eggs' have changed, of course they haven't changed, it's the advice about them which keeps changing. The eggs are oblivious to the advice, they are just as good (or bad) for you as they have ever been.

If you enjoy turmeric eat it this year, because it will be bad for you next year.

Wine and beer are the only foods which for millenia have always been considered to have only beneficial properties, at least that's what I tell myself.

Dave

User
Posted 24 Feb 2024 at 00:08

Flax seed oil is a poor substitute for "proper" omega3s:
https://www.health.harvard.edu/heart-health/why-not-flaxseed-oil

 

Eat fish especially the oily kind, it is unequivocally good for you.

There is also a considerable evidence emerging about seed oils and just how bad they are for your immune system.

Leave the flax to animals that have the correct teeth to grind the seeds.

Edited by member 24 Feb 2024 at 00:09  | Reason: URL fix

User
Posted 24 Feb 2024 at 21:15

2 large Edinburgh Gins (Rhubarb and Ginger) watching Scotland rugby match(well done boys BTW!) and then a bottle of wine with a (shared!) pizza.  What joint ache?🤣🤣🤣

Actually on a serious note something HAS changed over the past few days, my joints ARE getting better ATM….too early to say if it’s just  temporary, but it has lifted my mood so much💪💪💪💪

User
Posted 04 Jan 2023 at 21:51
Diagnosis

 I was diagnosed in June 2022 after routine blood test showed a PSA level of 36. In 2018 when I had my last blood test it was 3.6. TBH I should have gone to the GP sooner but then COVID struck.

I had a  Bone Scan(clear phew!), MRI Scan, CT Scan and biopsies. Diagnosis….T3BN0M0, suspicion of breaking into the RHS seminal vesicle.

 

User
Posted 06 Jan 2023 at 23:40

Hi Decho I switched from Prostap 3 jabs in my belly to the thighs a while ago, finding it much more less discomfort in the legs than the stomach.

 

 

User
Posted 12 Jan 2023 at 18:02

Been a good week for flushes, spent a couple of nights away at Crieff Hydro just chilling before my RT starts on Monday.

Had my 5th Acupuncture session today and I always come away feeling great. It’s not just the needles either. Some acupuncturists seem to just stick the needles in and leave you for 45 mins but not this guy. He talks and listens and you can talk to him about anything and everything….I call him my Therapist😊 I also have report that my flushes continue to improve, much less frequent and less severe when they do come…they are now manageable and not nearly so debilitating. I’ve not changed anything else, still take the Sage Leaf although I am not convinced they are helping, so I can only assume that the acupuncture IS making a difference….long May it continue.

tenderness following my recent Prostap injection now gone but have to say each one seems to be more uncomfortable than the last….maybe I should have kept away from the gym for a couple of days? Will remember that next time.

Off to the Maggies Mens Cancer support Group tomorrow and looking forward to meeting up with the guys again.

 

Edited by member 12 Jan 2023 at 18:07  | Reason: Not specified

User
Posted 12 Jan 2023 at 20:36

Hi Decho 

sounds like things are moving along for you

I have my first Prostap injection tomorrow and at last I have an appointment with oncologist on Tuesday.

I imagine I might have some questions and / or opinions Tuesday night 😉

N

User
Posted 12 Jan 2023 at 21:22

Hi Nigel,

Sounds like things are moving quite quickly for you, which is good because it’s the waiting that causes the biggest problem. Things were going fine for me until my first meet with the oncologist when he sprung the surprise of 37 fractions as an option..there then followed a 5 month delay in getting another appointment where I could ask my questions about the RT. Mind you being on HT for 6 months before RT is no bad thing from what I can understand.

good luck with your Onco meeting and I hope you get your treatment plan sorted.

One bit of advice I would give anyone who’s suffering from mental health issues because of this disease…don’t suffer in silence, speak to your GP.  Its a long journey through HT/RT/HT and the HT had a devastating effect on my mental health. A low dose of sertraline did wonders for my anxiety, as it has for other members on here.

User
Posted 13 Jan 2023 at 19:43

Hey Decho

thats is disappointing but as you say it is for the best. 
I Imagine  you will be over the disappointment by tomorrow.   Hahaha so much for gold seeds eh!!!  I guess it is for the best.

first Prostap jab today, I was allowed it in the arm/ shoulder  which apwas a boost as the nurse felt I had enough muscle there to take it!!  You have to take these little wins 🤣

Weirdly I can’t wait for oncology appointment on Tuesday.  How sad is that?

N

User
Posted 15 Jan 2023 at 14:10

Mentally tough as well as a physical one  never a day goes by when I don't worry about it all 2 years in after r/t and h/t psa has been steady at 0.01 but every twinge   bruise swelling ect you worry but have to realize we can't control it and we are getting older along the way good luck with your treatment and stay as positive as possible gaz 👍

User
Posted 15 Jan 2023 at 20:32
Those readings are great after treatment you had , I see it all good !
User
Posted 19 Jan 2023 at 10:45

Hi Malcolm

Sounds very like my RT experience at St Lukes, Guildford June 22. I liked driving down there after the mini enema and 400 ml water. Free parking for onco patients. Good banter in the waiting area, hoping your session was on time after all that water! 

Yes, I had fiducial gold markers plus tattoos to ensure a good aim with new, advanced linac. Being manhandled by pretty radiographers was pleasant but the zoladex rather spoilled things. It was great to Ring the Bell 3 times after my last session and wave goodbye (I hope!).

Stopped zolly 6 mo ago but side effects still with me, fatigue and aches and pains. Psa still  below detection limit but so is testosterone which may account for the side effects.

Only downside is some radiation proctitis which will be treated shortly.

My journey started about a year ago diagnosed T3b n0m0 G9 so a bit worried . Progress so far is good and as I am 79 I have stopped worrying.

Good luck to all of us.

Peternigel

User
Posted 19 Jan 2023 at 21:58
Decho, in one way, how frustrating. But at the same time it must be good to know that the oncologist cares enough to get it right for you.

If you are on HT, the cancer shouldn't be going anywhere anyway while you wait for the next MRI scan. In fact I wonder whether PET would pick up mets once you are on HT - does anyone know?

User
Posted 19 Jan 2023 at 22:27
I think I understand the onco's position although s/he perhaps hasn't articulated it very well. PSMA scans are not recognised so much for their diagnostic ability in the pelvic area as they are for identifying mets at very low PSA readings when there is a recurrence. As it is, if you do have micromets in pelvic lymph nodes, these are unlikely to show up on a scan when you have been on HT for 6 months.

On the up side, the 37 sessions was rather sprung on you last year as an alternative treatment option on a belt & braces approach rather than because your diagnostics showed that it was necessary; initially, you were expecting 20 sessions aimed at the prostate. So the issue is that plan B, which was dangled before you, now appears too risky and you revert to plan A. Frustrating for you but maybe in a few months you will look back and be pleased that the choice was taken out of your hands.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jan 2023 at 23:07
That sounds like a wonderful silver lining
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2023 at 19:46

Hey Decho 

hope you are feeling okay

i was convinced from your plan that I was destined for 37 fractions and pleased that the Oncologist said only 20 was needed. I do have several lit up lymph nodes in the pelvis. he explained that the additional number of fractions did not change the outcome as the cumulative dosage was the same and there was no evidence to suggest extra fractions improved the outcome. I think I read on here how the greys are calculated but can’t remember where. I think it is just they give a little more each time.

N

Edited by member 20 Jan 2023 at 19:47  | Reason: Not specified

User
Posted 20 Jan 2023 at 21:55

Lyn. I get it 

just not happy with what appears to me and my life as guess work.

 Thank you for your insight 

some days I feel confident and then I hear the different opinions and that creates doubt 

so what next?   I have a plan and I hope for the best  

 O better than that. I won’t let it grind me down

User
Posted 20 Jan 2023 at 22:09

PS

i am basically a problem  solver 

in industry and last 10 years in gov work and I struggle with this.   I understand I really do but doesn’t stop me being frustrated as I can not solve this. Just have to suck it up I guess 

User
Posted 21 Jan 2023 at 06:57

This may help explain the difference in number of treatments:

https://www.google.com/url?sa=t&source=web&cd=&ved=2ahUKEwjyuPWyidj8AhWQilwKHUTlB1UQFnoECAgQAQ&url=https%3A%2F%2Fwww.rcr.ac.uk%2Fsystem%2Ffiles%2Fpublication%2Ffield_publication_files%2Fbfco193_radiotherapy_dose_fractionation_third-edition-prostate-cancer_0.pdf&usg=AOvVaw1eHNRI67VxzKywvqgHom5j

 

 

 

 

 

 

 

Edited by member 21 Jan 2023 at 07:01  | Reason: Not specified

User
Posted 30 Jan 2023 at 15:10

My CNS has just phoned….God Bless these people, they are just so helpful.

She has just seen the letter from the Oncologist about the concerns on my 39 sessions. Apparently when the Oncologist discussed the plan with his colleagues they all thought treating the whole pelvic area was not worth the high risk of damaging the bowel and rectum. I am still at a loss as to why some people are ok for this whole pelvic area treatment and others are not, but I will be asking him when I have my next appointment. So now the plan is for 20 sessions to treat only the Prostate and Seminal Vesicles. The purpose of the MRI scan is to check how much the prostate(and presumably tumour) has shrunk. As my PSA test was still 1.6 I may have to wait longer to have the RT…they like it to be below 1 but I guess the scan will show what’s what. I’ve to get another PSA test a week before the Onco appointment on the 24th as the last one was done shortly after my gold marker seeds implant which could give a false reading.

My MRI scan was due in the 14th but I phoned them up and got a cancellation on Wednesday which is good…..might just manage a few days in Fuerteventura as there’s a flight on Thursday.

Been out on the bike today, cold here in Scotland but lovely and sunny so feeling good.

User
Posted 13 Feb 2023 at 20:12

So, following the earlier MRI scan on the 1st (God bless the NHS!) we managed to book flights to Fuerteventura on the 2nd and arrived back today. Should have been yesterday but my wife andI both caught some stomach bug and i was violently sick on Saturday night and could hardly stand on Sunday. A day of rest, fluids and electrolyte drinks and I was better by evening and managed to get seats in a flight today.

still getting issues with my gut but slowly improving.

10 days away was wonderful, the heat, the sunshine and the vibes of Corralejo really makes you relax. Unfortunately a Calima set in the last couple of days but still able to walk about In shorts and T shirts.

Did lots of walking up to 20k steps a day but started to get some joint ache and stiffness so decided to tone it down a bit. Many people say on here not to overdo it and I think I’ve learnt a valuable lesson. Can’t wait to get out on my ebike on Thursday after my PSA test(as I don’t want anything affecting it). It’s great exercise and not as much strain. Also back to the gym tomorrow.

Funny how this 3rd Prostap injection has changed things, I’ve had more issues than with the other two…one good thing though is that my flushes have massively improved. Wierd!

So, Onco appointment on 24th Feb and hopefully I can finally get an RT treatment plan in place.

Edited by member 13 Feb 2023 at 20:13  | Reason: Not specified

User
Posted 13 Feb 2023 at 21:11

I'm glad you're enjoying yourself. Prostate cancer can be a nuisance, but our primary duty should be enjoying life not fretting about cancer.

Dave

User
Posted 22 Feb 2023 at 16:33
Good news that it's still going in the right direction though.

Fingers crossed for Friday that you can get your RT started.

Best wishes

Elaine

User
Posted 24 Feb 2023 at 19:45

Great news Derek, hopefully now the end is in sight, well you know what I mean after waiting this long for the RT to start. Sounds like you have got a good oncologist and good that they are explaining everything.

Best of luck with the RT i'm sure it'll be a walk in the park😉

User
Posted 24 Feb 2023 at 20:13
Glad to hear you've got a definite plan in place now. Best of luck for the RT. I found it all pretty tolerable.

All the best,

Chris

User
Posted 28 Feb 2023 at 11:31
All the best of luck. RT is a bit of an endurance - but there will be a longer life at the end of it.
User
Posted 28 Feb 2023 at 13:46

Hi Dereck

Didn't find RT too much of a problem, 60 gray in 20 fractions to prostate and SVs. Worst part was the minienema and pint of water at home before 30min drive to Guildford. Appointment usually on time but much wriggling and a near thing sometimes! Some bowel problems towards the end of treatment and for a week or so after. I would rather have RT / HT than prostatectomy

Best of luck to you and to us all. Hope you have pretty radiographers

 

Peternigel

 

User
Posted 05 Apr 2023 at 18:58

Well, first RT session today and no Walk of Shame. As has been said by many people the staff were wonderful. It’s like a well oiled machine .

whilst waiting on my bladder filling I started to write a little poem which I thought I’d share with you…

 

If y’er o’er fifty and got a Willy?
Get yersel’ tested and don’t be so silly
Prostate Cancer IS a killer
But if caught early it’s not such a thriller. 

Many men don’t have symptoms and that’s a fact
But if you do it’s time to act
And if at night you’re up lots  to pee
That’s a warning sign for the doctor to see

You’ll get a finger up your bum
But don’t worry the doc won’t  use his thumb!
He’ll check for your size(of your prostate!🤣🤣🤣) and also a  lump
It only last seconds so  don’t take the hump!

It’s then a blood test that you’ll need
So that your PSA level is there to read
Don’t be alarmed if it’s higher than norm
It’s not the most reliable test in form.

If it’s bad news you’ll be sent for more tests. 
You’ll become one of NHS’s many guests
MRI scans and biopsies are next to be done
You’ve started a ‘journey’ you’ll wish you’d not come

The results will determine your options for cure
When that comes  you’ll feel better for sure.
But it’s you that must choose which route to take
I won’t kid you, it’s a difficult one to make

If you’re young (ish😊), healthy and spread it’s not done. 
You can have it whipped out…and your prostate is gone!
It’s a good option for those that can to strive,
But other options can equally keep you alive.

For me options were few because my diagnosis was late
So HT(hormone therapy) and RT(Radiotherapy) are to be my fate
I should have got tested sooner but you know….COVID😟
So when I found out I had cancer I was  f…ing livid!😡

HT for 3 years is what’s required for me,
And a 3 monthly jab in the belly it’s to be.
It has some real fun effects I wouldn’t want to own
As it stops your bits making testosterone. 

Enjoy your libido while you can.
Cos with HT thoughts of nookie go down the pan!
It’s really quite weird when you have no desire
Instead a nice Costa coffee is what you require😊

20 sessions of RT started today
And I’m so bloody relieved it’s underway. 
My first went well with NO ‘walk of shame’ (if you’ve got too much gas they make you go for a walk to try and fart!) 🤣🤣🤣🤣
I avoided brocoli last night as it’s normally to blame.

Then checks for years after with anxiety each time. 
That my curative path has kept me in line. 🤞🤞🤞
But there’s life after Cancer and I can see a future ahead
When finally I  can put this awful disease to bed

As my big bruv said to me, it’s what you need,
To ‘not let this define you’, very wise words indeed
So I get on with my life each and every day
And have lots of fun and laughter on the way

I’ve got so many people to thank, no less
Than Family, Friends, Maggie’s and the NHS
They’ve been such a support with all they’ve done
Without them this ordeal would not be much fun

So I do hope this poem finds you well. 
Men Take heed of my words to avoid this hell
If it can help just save even one life
I’ll be happy and not cause you any more strife 

User
Posted 06 Apr 2023 at 17:27

Busy day today…4th HT Jab and then onto Western for RT. Good news was that my PSA has finally dropped to below 1…it’s now 0.9. I’m pleased about this.

I’m so glad I was wearing shorts to my RT session. I got the time wrong by 15 mins so instead of having to wait 30 mins after drinking my water for my RT to start it was 45mins….and then there was a 10 minute delay. I didn’t think I was going to make it and lying in the table I really thought I was going to embarrass myself. Made it though and a quick dash to the toilet…fortunately there was nobody in it waiting for their enema to work.🤣🤣🤣

So, a valuable lesson learned….my RT times are all different so I’ll be double checking BEFORE I do the fill your bladder bit! I’ll also be wearing my shorts from now on no matter what the weather!

User
Posted 06 Apr 2023 at 17:52

Peternigel,

We must be miserable here in Scotland because there’s no sign of any bell or anything like that at the Western General🤣🤣🤣. I know I’m going to be emotional on my last session but will have to make do with a Huge hug from my wonderfully supportive wife🤗

User
Posted 15 Apr 2023 at 12:57

You have gold markers, so they should normally be able to just do a pair of X-rays at right angles to accurately locate the prostate. A daily cone beam CT scan on the LINAC is for patients who don't have the gold markers.

User
Posted 16 Apr 2023 at 13:48

Good luck with the rest of the treatment Decho and thanks for all the routine tips. Your posts have given me a lot more confidence about going through what's to come. Sounds like you have a really good team looking after you up there.

Ian

User
Posted 16 Apr 2023 at 14:03

Many thanks for your continuing journal. I'm a couple of months behind you in treatment and it's reassuring reading. 

User
Posted 23 Apr 2023 at 12:31

You should follow the advice of your own radiotherapy team - that will be based on your specific internal plumbing and the preferences of your oncologist.

Some hospitals issue a very strict diet sheet, others take more of a wait and see approach depending on how gassy you are. Most have an absolutely no alcohol rule. My husband was given a strict low fibre diet to follow but our hospital doesn't give men daily enemas whereas many do. 

Edited by member 23 Apr 2023 at 12:36  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Apr 2023 at 14:01

Great thread Decho.   Your profile finishes at 8th December.  It would be good to put a link to this thread on your profile.  All the best, Peter

User
Posted 25 Apr 2023 at 18:29
Hi Peternigel,

Getting there, 13 done, 7 to go!

Isn’t it strange how different hospitals recommend different diets! I had my clinic appointment today to get some cream for my raw rear end and also some fybogel. I got the diet sheet from her which recommends to avoid alcohol and strong caffeinated drinks. Also gives information on what you should and shouldn’t eat. TBH though so far my normal diet seems to be working fine for me, my motions are very soft but not diarrhoea, so I’m kind of reluctant to change it in case I go the other way round. I still feel really good, energy levels back up to what they were, walking 10-15k steps a day, and can’t wait to get back out on my ebike once I am a little less tender down below!

Derek

User
Posted 28 Apr 2023 at 19:45

 

16 down and 4 to go.

This journey has had its many ups and downs but today was one of the most traumatic. It was silly really because it was no big deal to anybody…except me!

Throughout the RT I’ve kept to the same daily routine which has worked very well for me. Most of my appointments have been in mid-afternoon, even though at different times. However todays was at 1pm…and its that time all next week.

I wanted to attend the weekly Maggies Men’s Cancer Support Group as it was an important meeting for the future of the Group, and I wanted to have a say. So off I went at 9am, stopped off for my coffee, attended the meeting which was another excellent meeting, had another DECAF tea during the meeting. I then set off for the Western which took an hour…no problems.

I followed my usual routine at the hospital, going to the loo to empty my bladder then drinking my 3 cups of water finishing 35 mins(I thought they might be early) before my time. As it got nearer to my appointment time of 1pm I could tell I was struggling with my bladder control…I never had this issue before. The radiographer called me in just before 1 and I told her I was struggling but thought I would be ok. She said they would hurry things along which they did…the staff are absolutely wonderful. However as the machine started I had a severe flush and was struggling to hold onto it. I tried to relax but is was very difficult. On the machines last pass I felt I had no option but to call out I was really struggling. The staff were great, encouraging me and even counting me down to the end of treatment. In the end though I couldn’t hold on and wet myself, not majorly but enough. Again the staff were brilliant and rushed in with a bowl for me to use whilst I was still six foot up in the air. They then lowered me down and helped me off the table making sure I was able to relieve myself properly.

I was most apologetic! They were most apologetic for putting me through it, and suggested next week to reduce my wait to 20 minutes for the final 4 session which I was pleased about.

We wished each other a lovely weekend and I departed feeling fine with a clean pair of underwear…good tip always take one with you!

I got in the car to drive home and immediately felt totally traumatised by what had happened…..you’re lying flat out on a table 6 foot in the air trying to keep as still as possible, worrying that if you move you might get zapped in the wrong place, but also desperately needing to pee! This was definitely the worst experience of the treatment so far and it’s taken me all afternoon to get over it. Now, it may sound silly but when somebody says to you don’t worry I’m sure it happens all the time you really want to punch them in the face, Fortunately my wife is so understanding and supportive and listened to me carefully when I got home and sympathised with me. 

Next week I  will be wearing pads just in case…

 

Anyway that’s the only negative, other than that feeling great, energy levels picked up again and still doing my 10k+ steps a day and keeping very active…even though I felt very sorry for myself this afternoon. I’ve had one other accident when I’ve been out walking but was prepared for it this time,  just laughed it off and did the moonwalk home! Mornings are the problem for this, later in the day no problem at all.

 

Roll on next Thursday and ringing that 🛎️. Oops, sorry forgot Western don’t have one so I will have to ring it in my head!

 

Apologies for the long story but I have always wanted to document the bad as well as the good on this ‘journey’ in the hope it might help others.

 


Derek

User
Posted 28 Apr 2023 at 20:21

Hi Decho, 

Yes that bladder control is the thing that worries me the most if I ever need it.  They're saying 3 glasses 20 minutes before?  These are standard sized glasses, not pints :)    If I need to have it I'll try experimenting I can definitely hold 2 large mugs of tea for over an hour.

Six feet in the air?  Haven't heard of that one before.  Is that normal?

I got a letter today from the charity that supports Preston cancer centre and they're saying they've just got Surface Guided Radiotherapy which they're pretty chuffed about.  Not sure what it is but not many have it they say, just 15.

Keep up the reporting.  Peter

User
Posted 28 Apr 2023 at 22:40
I remember the last 3 or 4 of my 20 sessions when I sailed very close to the wind with 'bladder control' and I had to let a bit out once or twice before the treatment ... like you say best to try and find out when your approx. due in and and adjust your intake accordingly so your not hanging on too long, nothing worse than being absolutely desperate for a pee is there !. Good Luck for next week Dech. 🤞 🛎️
User
Posted 29 Apr 2023 at 09:35

On the several occasions I have been desperate for a pee waiting to be zapped, one of the team said to let a bit out and we will do an ultrasound scan of your bladder to see if it is still full enough. Much relief! Otherwise drink half a cup of water and wait 15 mins a d we will check again.

Very understanding.

Peternigel

User
Posted 29 Apr 2023 at 18:23

Thanks Decho,

Your posts are always informative and helpful and I appreciate you telling it "like it is".  I can understand your distress at your situation.  I can't imagine how difficult it must be to try to hold absolutely still so that you don't get zapeed by the radiation in the wrong place, while also desperate to have a leak.  You're a hero.

Good luck with the last reamining treatments.

JedSee.

User
Posted 29 Apr 2023 at 18:51

Thanks everyone for your good wishes and support, it means so much to me.🙏 without you and the help of my Maggies Mens Cancer support Group, and not forgetting my family,  I would really have struggled to get through this.

I was on a real downer yesterday, so upset about nothing….but this disease and treatment does this to you at times.

A good sleep and I am feeling back to my cheery(?) and positive self. Been out for a long walk today and going to have a nice evening chilling with my wonderful wife, Alison😊

Bring on Monday…..and  even more so Thursday! I know I’m  going to be emotional but Alison will be there with me, as she has been throughout. Trying to think of how a I can show my appreciation to the wonderful RT team at the Western. Sitting in the waiting room I see lots of empty choc boxes getting dumped in the bin so would like to do something a little different for them with the Coronation coming up🤔🤔🤔.

I’ve continued developing my poem whilst sitting in the waiting room trying to take my mind off my bladder and I’m actually quite proud of it…and it so reflects my experiences and moods. I will post on here after Thursday.

User
Posted 30 Apr 2023 at 19:15
On the drinking water before RT thing, before my sessions I had the mini enemas when got to the hospital and waited until someone from the RT team came & told me to drink my 3 cups of water which was, to the best of their abilty, 20mins before I went onto the table and that worked quite well.

Peter

User
Posted 01 May 2023 at 08:01
The Bladder thing, is probably the worst aspect of the treatment - just keep thinking, it is saving your life mate.
User
Posted 01 May 2023 at 18:14

Glad to hear it's going well decho had 37 fractions myself 2 years ago a little sore at the end but found it tolerable 👍

User
Posted 01 May 2023 at 19:54

You are absolutely right about having same appointment times. Decho. Mine were at different times just about every day. I quickly discovered that what's in your stomach makes a big difference on how quickly water passes through your system. One appointment was immediately after lunch and I ended up missing my a slot because my bladder wasn't filling. On other occasions I was having to let some out before I got in the treatment room and on one occasion my bladder gave way on the table. I'm sure on lot of this bladder anxiety could be avoided by having a set time every day.

User
Posted 02 May 2023 at 07:56

All the best for the rest of the week Decho. Last week I went to a getting started with radiotherapy session with a radiographer at Maggie's in Cardiff. I asked about bladder level and movement and he said I would be having a cone CT scan each time and they can constantly see if the rectum is inflating because of gas or is not empty. As you were told, the machine will stop if the target area is moved too much.  Thanks again for all the tips and updates.

Ian

User
Posted 02 May 2023 at 08:36

Ian,

Thanks!

That sounds like a great idea getting a Radiographer along to Maggies…I will suggest that to my Men’s Group on Friday.

I have gold marker seeds implanted so don’t get a CT scan every day. I had a CT scan first day and then only an X-Ray each day, which is why I was assuming that the X-Ray must show if everything is in the right place? I will ask my very friendly radiographer today😊

Good luck with your RT when it starts Ian, I will follow your progress closely.

Derek

Edited by member 02 May 2023 at 08:37  | Reason: Not specified

User
Posted 04 May 2023 at 21:29
Well done, you're an inspiration!
User
Posted 04 May 2023 at 22:32
Congrats on finishing your treatment and a lovey touch talking them some goodies. Hope you enjoyed yours too and have a peaceful night and continue to feel great.

Best wishes

M

User
Posted 04 May 2023 at 22:37
👏👏👏🎉🎊
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 May 2023 at 13:05

Well done Decho, good to hear your feeling well and long may that continue.

I am 3 weeks into the bicalutamide and 1 week since my first prostap and am wondering if they are doing anything as so far I do not feel any different. Maybe I never had any testosterone to begin with😉

All the best with your recovery and thanks again for sharing your experiences with us.

Ian

User
Posted 05 May 2023 at 13:29
Hi Ian,

Thanks so much, I do really feel good. I’m just back from the men’s cancer support group where I always cheer them up. Being positive is so important in getting through this.

Sorry to spoil your party with regards to testosterone….I thought the same and then all of a sudden BANG!🤣🤣🤣 but not everybody’s the same so you might be lucky.🤞🤞🤞

At least though unlike having RP you’ll probably not get frustrated as like me, you’ll probably feel more like having a cup of tea….and I never, ever thought I would hear myself saying THAT!

Still can have a lot of pleasure though if you learn to adapt to new ways of doing things😉

User
Posted 05 May 2023 at 19:00

It’s a mixed feeling when you finish treatment. Elated it’s all over but connections made with fellow patients and staff take time to process. Enjoy dinner tonight and best wishes to you going forward. 

Ido4

User
Posted 09 May 2023 at 22:44

Hi Decho

My OH is due to start RT early June and we have found your posts so useful.  Thank you for taking the time to explain the treatment as we now know what to expect which certainly has helped our stress levels.  Best wishes

 

User
Posted 10 May 2023 at 12:02

Hi Decho

I'm sure your detailed diary of your journey will be very useful and at the same time inspiring to others in your situation.  All the best. Ian.

User
Posted 12 May 2023 at 15:15

One week on since the end of RT and things going generally well although I’m feeling a bit neglected by the NHS when it comes to aftercare. Last Saturday I started to get a real stinging pain when having a bowel movement. It felt a bit like haemorrhoids but I had an operation a long time ago which meant I shouldn’t get these….and there were no signs of them, so I assume it might be a bit of damage by radiation. I knew from the many hours I’ve spent on this wonderful forum that this was quite a common side effect and that anusol can help. I managed to get a hold of some but didn’t use it until I had checked with my CNS. She confirmed it was ok to use it and that I should consult with my GP for any issues with side effects - this surprised me a bit I have to say as I thought they were specialists there to help?
Anyway I started using the cream and it did help, so I went to my local chemist to see if they could prescribe for me as I needed some more, however they said I would need to get the prescription from my GP! I asked if I could buy some but she said No, as it wasn’t for haemorrhoids! I tried to explain it to her but she wasnt interested….she didn’t even consult the pharmacist! And you can buy it off the shelves in Asda no questions asked!


So, off to my GP surgery to see if I could get a telephone appointment with my GP- I always go in person as getting through on the phone is never easy.  Yes, we can do that…2nd June!!! Well that’s not much good😟 normally when you mention the ‘C’ word you get an appointment same day but this rather snooty receptionist was having none of it! I explained to her that I was having side effects that needed attention so she said I should send an email for the attention of my GP. Anyway I did that on Wednesday and so far haven’t heard a dicky bird!. I know they are busy but this is all very disappointing. A trip to my local Asda sorted the issue, but there are other things I want to discuss with my GP, especially about my wonky penis(as my wife calls it🤣🤣)

anyway the stinging is much better, still there a little and using the cream. Energy levels still good, been out twice on my ebike this week for 3 hour cycles(with coffee stops😊). This afternoon I’ve been out shovelling topsoil and now I am resting. Still managing my 10k+ steps most days and feeling good, although I was wiped out on Monday, kept falling asleep…mind you the weather was awful so I didn’t get much exercise.

I’m getting more confident now about my bowel urges…they only occur in the morning and I can now control them a bit better until I get to a toilet. I do still carry an emergency kit in the car but have never needed it. Today I was away out all morning and this was the first day I didn’t need to wear a pad. I’ve been wearing Attend F6 in the morning when out and about just to give me that reassurance that I wouldn’t embarrass myself if I had an accident…..they seem very secure although I have never actually tested them out for real!

So, I’m off to Fuerteventura a week tomorrow and can’t wait. I feel confident that I won’t have issues on the 4.5 hour flight as it’s in the afternoon.

got a busy weekend looking after our 2 grandsons, 7 and 9 and they always bring me joy and happiness!😊

I’ll update you again, next Friday, have a good weekend!

 

User
Posted 12 May 2023 at 16:16

Originally Posted by: Online Community Member

Deco, you'll have to itemise your in-car emergency kit, sounds very sensible! 

 

Here we go😊

Spare Pad, nickers and shorts….I always wear shorts from 1st April although it’s been damned cold in Scotland.
Pee bottle, bought mine from Amazon,
Towel for use with the above in case you need to use it and don’t want passing buses watching you🤣🤣
Toilet paper and wet wipes.
Waterproof mat for my car seat just in case I need to use it

Only used the bottle once on return from Edinburgh…TBH I think just having it there keeps my mind off having an accident!

 

User
Posted 12 May 2023 at 17:15

Yes Decho, some chemists behave like little tin gods - I find Preparation H ointment works pretty well, it has no cocaine which can irritate, more than it cures!
As for GPs - you can be half dead, before they take interest. Such is the NHS in 2023.

Edited by member 12 May 2023 at 17:16  | Reason: Not specified

User
Posted 13 May 2023 at 09:05

Hi Derek

I agree that once you have finished RT the hospital does rather lose interest and relies on 6 mo PSA and testosterone tests. If PSA remains low then OK, if not we will see you. Although I had no pain I had several episodes of blood in poo up to 6 mo after finishing RT. Mentioned this to my CNS nurse who was pretty prompt in referring me to colorectal. Again swift response and had a colonoscopy. Two small areas of radiation proctitis found which did not require treatment but 3 colonic polyps found and removed. I think the current interest in bowel cancer may have concentrated minds!

Still feel a wreck most of the time with fatigue  achey muscles and joints, no libido. I hope things will I.prove if my T returns to normal. Next bloods in June. Fingers crossed.

Considering that I finished zolly last Sept, it's effects are dragging on. If more people realised how awful it can make you feel perhaps they would not have it, although the alternative is certainly worse!

Pleased you are getting on OK despite the bowel problem.

Good luck to us all.

Peternigel

User
Posted 20 May 2023 at 06:17

2 weeks on from finishing RT and feeling great. I would say bowels more or less back to normal and my confidence that I can control them is back. Still have some urinary poor flow issues at night but other than that I’m feeling much better than I expected at this stage.

Off to Fuerteventura today and not nervous about the 4.5 hour flight at all. Will take my  MacMillan cancer card just in case.

I still haven’t heard back from my GP, went to the surgery again on Wednesday and they had NO record of my email. Different receptionist this time told me to write a note and leave it which I did…still nothing.  Before and during my RT I couldn’t fault the treatment I have had…but the aftercare totally sucks! Nobody seems to want to know😟
comparing this with a friend whose not long had RARP and has had really good aftercare and had his post op  checkup with his surgeon this week. I’ve felt  for some time that those of us on the HT/RT route are treated like second class ‘passengers’, which I think is totally unfair given that we have up to 3 years of treatment to endure.

Anyway todays a good day and looking forward to some time in the sun(shade😎)…lots of walking and cycling….and a few sangrias watching the world go by😊

 

User
Posted 29 Jun 2023 at 19:08

Hi Decho,

I'm sorry to hear of your problems getting treatment for Peyronie's disease.

I know that you're in Scotland and that you've had radiotherapy, not surgery.  I'm in England and was provided with the Soma Correct device from the NHS after Prostatectomy.  However, I was surprised that you seem to have been quoted £700 to buy it privately (or did you mean to buy both the SomaCorrect and the Response X?).  I understood that the Soma Correct costs about £300 (from iMedicare, I believe).   I haven't developed Peyronie's disease (yet?) and I've been using it for about 8 months.  I hope this information helps, but if I've misunderstood your situation, please accept my apologies.

Hope you can get a satisfactory solution.

Best wishes,

JedSee.

User
Posted 29 Jun 2023 at 19:16
Worth checking the NHS Scotland prescribing guidelines ... in England, men are entitled to a vacuum device if they have ED as a result of prostate cancer or the treatment of prostate cancer - it doesn't specify RP or exclude RT (although it is true that many GPs don't seem to realise that men on HT/RT should be referred to ED clinic)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jun 2023 at 19:21

The following post is based on my experience in England, guidelines in Scotland may be different.

When you read medical guidelines you should read them as if you were a solicitor, not a medic or a patient. I learnt this from an old man who blagged his way into jumping the queue for a heart bypass. I won't go into his story, and I won't pass any moral judgement on him or anyone else.

In England if you have cancer or are suffering from the symptoms of cancer treatments, you can have free prescriptions for five years. (In Scotland and Wales everyone gets free prescriptions anyway)

During HT, I didn't have much libido or erections, but there were times when they would have been useful. My GP was happy to prescribe Viagra (and other pde-5s) before I finished HT: though they weren't very effective.

Post treatment erections were not very strong, but pde-5s were now effective. As a result I am still prescribed pde-5s. My free prescription card expired this year, but as I am still prescribed medicine for the effects of cancer treatment it was renewed without question. Which means I get all my other prescriptions free. The only problem is that I don't actually have any other health problems (I'm not a yorkshireman, but lived there long enough to pick up some of their habits, like complaining when I'm not getting something for free, even if it is because I'm in good health).

Derrick, the important thing is your ED and Peyronie's disease is caused by cancer treatment. Just because RARP is a common cause of ED, it doesn't exclude you from being treated for HT induced ED and Peyronie's, unless the Scottish guidelines explicitly state it is only for RARP patients.

Edit: just seen Lyn's post, same as mine but much more concise.

 

Edited by member 29 Jun 2023 at 19:23  | Reason: Not specified

Dave

User
Posted 29 Jun 2023 at 20:53

Thanks all for the support, I don’t like moaning because I feel I should be grateful for hopefully having my cancer cured. But like many others on this forum and despite my (young?) age, having a sex life is important to me and my wife. Ok we can still pleasure each other and it’s very nice, but penetration is just not possible and unless I get this fixed it never will be.

Darren(not sure if I’m  allowed to mention his name?) from imedicare has been so helpful and knows my consultant well and says he is excellent. The consultant took so much time to explain things to me…but I guess that’s to be expected if you’re paying for it?

Jedsee, the £700 was for both devices and the consultant did say I might get a discount for bulk buying LOL
also I believe you can claim back VAT but not sure what hoops you have to jump through to do that.

I get my next prostap next Thursday so will ask the CNS…and I might pop into Maggies tomorrow for a chat…I always come out feeling better from there.

I am not giving up on this…yet!

User
Posted 29 Jun 2023 at 20:59

On a more positive note, this week I have started a new regime of exercise: Swimming, Gym, basic Pilates and EPSOM salt baths. Still doing the walking and cycling as well but maybe will cut down the the mileage on my ebike.
Its very early days yet but the aching joints do seem to be a bit better….long May it continue🤞

User
Posted 13 Jul 2023 at 19:16

Well, today I’m the proud owner of a Somacorrect Xtra vacuum device courtesy of the NHS. It took a bit of effort on my part, including paying a consultation fee to a private specialist who diagnosed my Peyronie’s disease. The letter to the GP persuaded my GP to write a prescription for me and iMedicare were also VERY helpful in giving me the advice note to get the correct items.

Onwards and Upwards(Hopefully🤞🤞🤞)

User
Posted 28 Jul 2023 at 09:30

Well, back out in Fuerteventura for a couple of weeks to try and take my mind off the forthcoming PSA test on the 14th, 3 months after finishing RT and my Onco appointment on 23rd. Oh, and it’s nice to escape the dreadful Scottish Weather. Corralejo is just such a chilled and vibrant place, great for relaxing.
And the pump came with me in my hand luggage. I watched my bag carefully as it went through the scanner…..will it go right😱 or will it go straight on😊? Well it went straight on(phew!) but I had already worked out what I was going to say if the asked. “I’ve got a wonky Willy and it’s a correction device, I’ll demonstrate if you like but you might get embarrassed!”.🤣🤣🤣 I’m going to have to learn to say that in Spanish for the return journey, mind you they are so miserable at security I doubt they’d find it funny!😟

The vacuum pump has already started to make a difference. Too early to see whether it’s helping with Peyronie’s, but I’ve definitely notice a difference in size in my flaccid state….and it feels more alive! The pump is really easy to use and clean, I do it every morning unless there’s something more ‘fun’ on the agenda.

Grandsons arrive next Wednesday for a week with their dad so planning a very busy schedule…water park, wildlife park, glass bottom boat, beach and so on. Grandchildren just make your life SO complete.

User
Posted 31 Jul 2023 at 16:13

Hi Decho

Good to hear you have finally made some progress in sorting out the Peyronie issue. Have a great time with the grandkids and best of luck with the PSA result.

Cheers

Ian

User
Posted 31 Jul 2023 at 20:28
Thanks Ian, the support of everyone on this website means everything to me. If there’s one thing that can help take my mind off the forthcoming BIG tests, it’s my 2 wonderful grandsons!
User
Posted 13 Aug 2023 at 11:49

Big week for me coming up…I’m just so glad I have been chilling in the sun until yesterday, although chilling may be the wrong word as it was 40 degrees when we left Fuerteventura…not good for the hot flushes🥵

I was lucky to get an appointment with the ED nurse today who was very informative and empathetic. The appointment came a lot sooner than expected which is a little disappointing as I could have saved myself a lot of cash going privately to diagnose Peyronie’s…she was very knowledgeable on the subject and I could have had exactly the same outcome without the cost of going private😟
Anyway she took a lot of time to explain how to use the device..and she also confirmed that many men need the extra large cylinder, which is not supplied with the SomaCorrect, you only get small, medium and large. She said VERY few men use the smallest cylinder. So, a useful tip would be if you’re being supplied with a SomaCorrect, insist that they provide an extra large cylinder instead of the small one.
She’s also writing to my GP to prescribe me a 12 week course of Tadalafil to see if I get on ok with it.
So, all in all, a very good meeting and she’s left me her number to contact her.

Tomorrow is first PSA test 3 months after RT and I can feel the anxiety building…thank god for Sertraline which is keeping me on an even keel.

Ive been attending a ‘Living with PCa’ course run by Maggies over 6 weeks which has been excellent but which would have been even more use if I had been able to attend following diagnosis. On Tuesday there’s a follow up with the wives/partners…the men go off for coffee for an hour and the wives have a chat, and then the men come in for the last half hour. I think this is a great idea as it will give my wife a chance to talk about her feelings with others in the same boat. We’re a,l going out for lunch together after the meeting. Maggies really has been a great help to me.

Friday I hope to get the results of my PSA and I know I will be really uptight about it. Fortunately, it’s the monthly PCa support Group at Maggies in the afternoon so whatever the outcome I know I will be able to get some support from the others in the Group.

Then meeting with the Onco on the 23rd and not looking forward to this…I will need to go in WELL prepared with any questions….. for which I will get a VERY direct answer.

Finally, since finishing RT I have managed to put on 8kg, was doing fine before this. My son is a nutritionist and distributor for Herbalife products, so I’m going on a course of using the products to see how I get on. We already use the shakes and snack bars which are really good,but we maybe don’t take it seriously enough. So, this time it’s serious and I’m going to stop alcohol as well and get exercising. My current readings on the magic scales are:

Weight 99.3kg😟😟
BMI 27.2😟
body Fat 24.5%👍
Muscle Mass: 71.35kg
Muscle Quality: 58😊 (apparently I’m muscular🤷🏼‍♂️)
Body Type: 5👍
Bone Mass:3.7Kg😊
Visceral Fat: 14 😟😟
BMR: 2.192kcal
Metabolic Age: 52 😊 (I’m just a young thing😉)
Body Water: 46.1%😟

So, there you go, I’ve gone public now and will report back before my next Maggies meeting on the 15th September. I have no excuses for not making a difference, especially with weight and Visceral Fat!

 

Edited by member 13 Aug 2023 at 11:51  | Reason: Not specified

User
Posted 13 Aug 2023 at 12:57

It sounds like you have a very good support centre at your Maggies.

User
Posted 14 Aug 2023 at 18:04
Everything crossed for good PSA results 🤞
User
Posted 15 Aug 2023 at 01:22

Best of luck Derek for your PSA test and appointment.

The Maggie’s you go to sounds great. I’m not sure they’re all as good. I don’t think the one near us has specific groups for prostate cancer.

Elaine

User
Posted 15 Aug 2023 at 08:51

Hi Derek

Good luck with the PSA results. I am sure they will be fine. Don't have a Maggies near us unfortunately  but do have a local cancer support group which meets monthly.

Envy your hot sunshine!

 

Peternigel

User
Posted 11 Dec 2023 at 18:59
Good news Derek. And just before Xmas. Enjoy
User
Posted 11 Dec 2023 at 21:12
Brilliant news Derek, delighted for you

Have a great Christmas and a couple of wee drams on Hogmanay 👍

User
Posted 11 Dec 2023 at 23:01

Great news, that's excellent!

User
Posted 12 Dec 2023 at 00:45
🎉🍻🍷
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Dec 2023 at 01:09

Excellent news.

User
Posted 12 Dec 2023 at 19:24

Great news, Decho.  

Have a great Xmas and Hogmanay.  May you continue to 'go down' in 2024.

Best wishes,

JedSee

User
Posted 12 Dec 2023 at 20:14

Brilliant news Derek. 👍

User
Posted 13 Dec 2023 at 07:57
That sounds like a dangerous place !

Have a good Xmas & new year - & the same to everyone who contributes to this valuable forum.

Bob - West Suffolk.

User
Posted 13 Dec 2023 at 21:29

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

 

I went for my acupuncture session today, went into the waiting room and sat down on one of these wooden springy ikea chairs. As I sat down, the back of the chair flexed back and hit a glass cabinet which toppled a bit and Chinese ornaments inside it fell over. Unfortunately on top of it there was an artificial bonsai tree in a pot which toppled over, fell a couple of feet and landed on my head! 

Morning Derek, 

I think they call it a chain reaction.😁

I still cringe when I remember one. 

25 years ago when I was courting my current wife, near the beginning of our romance. We were sharing a bath. Scented tealight candles around it masses of bubbles etc etc.I decided the scene was set for a romantic stand up cuddle. As I was getting to my feet I slipped on a bar of soap. Lost my balance. Grabbed hold of the shower curtain. Pulled it from its mountings. Fell out of the bath. Went head long into a mirrored bathroom cabinet. Smashed it and split open my head. I lay face down, sprawled across the floor with the shower curtain resting along the crack of my bum.

I am the Frank Spencer of karma Sutra.

 

 

 

Well, that brings a whole new meaning to the phrase ‘Not tonight dear I’ve got a headache’🤣🤣🤣🤣

As I’ve said many times….on this journey you can either laugh or cry and laughing is better for your sanity!

User
Posted 05 Jan 2024 at 11:27

Getting down to 0.1 is fantastic Decho. Enjoy Fuertaventura. 

Ido4

User
Posted 30 Jan 2024 at 15:46

Love it Adrian, my middle stump is certainly not what it use to be either!🤣🤣

User
Posted 30 Jan 2024 at 15:59

Keep up the cycling decho it must help I carried on working although offered a good package to retire so gets lots off exercise didn't change my diet at all before or after treatment and plodding on as normal really hoping the psa stay's the same  you will have to use the drive through at Costa save you getting off the bike 🤣🤣🤣just a thought all the best gaz 👍

User
Posted 05 Feb 2024 at 17:40

Originally Posted by: Online Community Member

Hi decho sound's like you are still struggling with the hormone therapy did you ask oncology if you could stop at 18 months? 

Hi Gaz,

Ive actually been on it more than 18 months but 9 months of that was before RT. I get the impression that the RT keeps working for 18 months until you reach your NADIR so I think it’s worth staying on it for 18months after RT. My Oncologist is not the most personable, empathetic character so will wait until/if my PSA stabilises at <0.1 (it’s 0.1 ATM) and then maybe broach the subject. I do keep asking my CNS but she just says 3 years…having said that a friend of mine went to have his latest Prostap jab and was told he didn’t need any more. however he’s going in for a major Op tomorrow so I think they thought better not to have this bothering him as well.

Maybe I’m just being an old moaner but the other side effects I can deal with, it’s just this one that get me down. However looking forward to getting out on my ebike tomorrow if the gale dies down!

Cheers,

Derek

Edited by member 05 Feb 2024 at 17:43  | Reason: Not specified

User
Posted 05 Feb 2024 at 20:15

Thanks decho my psa was 24.9 on diagnosis and Gleason 9 so not good but psa has remained stable so I don't count my chickens just yet but feeling more or less back to normal so hopefully it will carry on 🙏 just arranged a holiday to your lovely part off the world to the isle off whitorn  enjoy your ride tomorrow 👍

User
Posted 05 Feb 2024 at 21:01
Hey Derek it’s hard to compare pain levels. If I sit still on settee too long it can be agony getting up but then settles quickly. First thing in the morning I have to steady myself going to loo and downstairs. I’m one of life’s unsettled people so am mostly moving. I walk the dogs each day with Mrs CJ for around 40 mins. If I’m flying my planes I’m on my feet for 2 out of 4 hours. My knees are like pure gristle. I’m on Celecoxib ( strong Ibu ) for that. I take Vit B and Thiamine as prescribed by GP but that may be because of my wine 🍷 habit 😬😬. I feel your pain and get that at 10 yrs older it could be way worse than mine. But at least it may abate when you stop. My advice is keep moving , muscle on and take painkillers if you need to. But don’t overdo it I guess. Everything in moderation ( except wine 👌
User
Posted 05 Feb 2024 at 22:32

Thanks Chris, that all sounds very familiar to me…even the wine! I’m trying to cut down and lose some weight so restricting myself ATM….carrying an extra 6 bags of sugar is certainly not helping! I behave myself during the week but at the weekend allow myself a treat…or two. After all you need to have some fun.

I’m going to talk to my CNS and if need be my GP to see if there’s anything they suggest.

 

User
Posted 17 Feb 2024 at 19:26

I was on hormone therapy 3 months before radiotherapy and 15 months after Derek onco was pleased with my psa after then and gave me the opportunity to finish hormone therapy I have since been released from hospital and now just have my six monthly psa check which is still undetectable hopefully will continue that way gaz 👍

User
Posted 17 Feb 2024 at 21:19
Decho, this just doesn't sound right at all! It seems that you are suffering far beyond what would normally be reported - how do you know it is down to the HT? Have you been referred to and assessed by a rheumatologist? What you are describing sounds much more like a rheumatoid or auto-immune disease?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Feb 2024 at 21:38

good post Lynn hormone therapy is not great I found it tolerable decho seems to be suffering more than what is the normal side effects you could be right it might be down to something else like you have indicated 

User
Posted 18 Feb 2024 at 06:55

Originally Posted by: Online Community Member
Decho, this just doesn't sound right at all! It seems that you are suffering far beyond what would normally be reported - how do you know it is down to the HT? Have you been referred to and assessed by a rheumatologist? What you are describing sounds much more like a rheumatoid or auto-immune disease?

Thanks Lyn, I agree…it’s not right, I sometimes think I’m just an old moan. I knew I was in for a bumpy ride with this HT treatment and I can  live with  the Insomnia, anxiety, lack of libido, ED, Peyronie’s, Brain Fog and Hot flushes, but the joint ache is getting worse and that’s scary. It’s worst I the morning(this morning my legs feel numb below the knees), improves during the day and then deteriorates in the evening. I know there can be a tendency to blame everything on the disease or treatment but a I’ve  never had any issues like this before I started this treatment, just like the other side-effects.

I’ve already had a blood test for polymyalgia Rheumatica as well as liver, kidney, glucos etc, and all came back clear.
I’m going to phone my CNS tomorrow and also try and get a GP appointment. I’m also going to phone the specialist nurse on PCUK. I’ve phoned them before and got a really nice and helpful  guy called Andy. Ive  got an appointment with my Physio on Thursday.

 

Edited by member 18 Feb 2024 at 07:12  | Reason: Not specified

User
Posted 22 Feb 2024 at 16:01

Visit to my Physio today in his torture chamber(gym!)😱 Actually he is really good…
I explained to him about the pains in my hips, knees, lower left leg and Achilles Tendon. He tested for movement, which was good but could be better, again good strength better in my left leg which doesn’t surprise me as the right hip gives me more pain than the left.

He thinks the problems with my legs stems from my glutes and has given me 3 simple exercises to strengthen them over the next few weeks, and he showed me how to do the squats and lunges correctly. He also wants me to get a balance board to improve my balance which is not very good…maybe partly due to the fact I am tall….I wondering if tall people are more susceptible to joint issues🤔🤔🤔

Ive started taking seven Seven Seas Joint Care supplex with turmeric(much higher dose than I was already taking) and it seems to be helping with the pain. I tried taking Devils Claw but it didn’t agree with my gut and gave me dreadful flatulence.

So I’m off to Fuerteventura on Sunday for 5 weeks in the sun and away from this dreadful Scottish winter….hopefully I will come back with a new body!🤣🤣🤣

User
Posted 22 Feb 2024 at 20:47

Well I guess it’s straight to Mercadonas Fish counter when I arrive in Fuerteventura.

it’s a bit of a minefield this, what supplements are good for which are not🤷🏼‍♂️

I wouldn’t have thought that Seven Seas would have included a Turmeric Tablet with their Jointcare tablet which wasn’t safe?

Thanks for the replies.

User
Posted 23 Feb 2024 at 20:38

Lizzo37,

Re: ? High Levels of DHT are a risk for Prostate Cancer?  This medical article in Pub Med from July 2020 says the opposite: that high levels of DHT are protective for people with and without prostate cancer.

PubMed:  https://pubmed.ncbi.nlm.nih.gov/32368817/#:~:text=Prostate,2020%20May%205.

Perhaps you are aware of more recent research?

Best wishes,

JedSee.

User
Posted 25 Feb 2024 at 19:12
Jedsee find yourself a supply of freshwater trout, it's an oily fish that lives in clean upland lakes and rivers. No accumulation of mercury to worry about there.
User
Posted 19 Mar 2024 at 12:26

I spoke to my CNS this morning, they really ARE such a support. She confirmed that as my PSA was falling and low it was unlikely that this was causing my leg problems, more likely the HT making perhaps an existing problem worse. She said that my bone scan showed some wear on the knees, which I didn’t know about.

The outcome is she is going to speak to the Onco about me stopping HT early if my PSA stays low the next 2 tests, April and July. Perhaps April being my last Prostap Injection😊. This would mean that I have been on HT for 2 years in total, 9 months before RT and 15 months after RT finished. In the meantime they are going to try and find out exactly what the problem is with my legs.

I can ONLY live in Hope🤞🤞🤞🤞

User
Posted 22 Mar 2024 at 18:14

Great news!

User
Posted 22 Mar 2024 at 19:02

Light at the end of a long tunnel. That's great news.

User
Posted 22 Mar 2024 at 20:50

That's great news, Decho.  

Hope you get those legs sorted soon.

Best wishes,

JedSee.

User
Posted 22 Mar 2024 at 21:31
Great news Derek, really happy for you 👍
User
Posted 22 Mar 2024 at 22:08

Great news! 😊 

User
Posted 23 Mar 2024 at 00:34
Brilliant
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Mar 2024 at 06:51

Originally Posted by: Online Community Member

I am SOOOOOOOOO HAPPY!😊😊😊😊

I'm very happy for you mate.😃 👍

User
Posted 23 Mar 2024 at 07:06

Great news decho 👍gaz

User
Posted 23 Mar 2024 at 14:50

Fantastic stuff Derek.

 

Jamie.

User
Posted 23 Mar 2024 at 19:13
Lovely Jubbly mate 👍👌☝️💪
User
Posted 24 Mar 2024 at 08:58
👍Just what you were hoping for. Hope your joints get sorted too

Cheers

Bill

User
Posted 24 Mar 2024 at 09:48

Great news Derek!

User
Posted 24 Mar 2024 at 10:20
Amazing news

Best wishes

Ann

User
Posted 24 Mar 2024 at 11:16

👍

Dave

User
Posted 24 Mar 2024 at 12:07

Brilliant news mate, must be a huge relief.

All the best

Ian 

 

User
Posted 24 Mar 2024 at 18:31

Good for you, don't know you?, but have read a lot of your post.

Glad this long and arduous road for you has finally concluded.

Me, mine is just beginning, told I have contained PSC ?, offered Radio or Surg, still not sure?. Starting the long road of HT tomorrow, oh Dear not looking forward to that as I feel fine, of what I have heard its not good, my son in law is after my van, told him I,m not dead yet, haha. A journey ends and another begins I guess, all the best  to you .

User
Posted 04 Apr 2024 at 12:26

That's great news Derek! Really pleased for you.

Ian.

User
Posted 04 Apr 2024 at 12:37

Excellent news, time to celebrate.

User
Posted 04 Apr 2024 at 13:54

Well done Derek!

Wait until your libido fully returns. Your wife will have to try and sleep with one eye open.😁

 

User
Posted 04 Apr 2024 at 14:57

Great result Derek!

You've certainly earned that celebratory drink.

Kev.

User
Posted 04 Apr 2024 at 15:46

Fab news- start of the journey back to less aches and pains and away from hormone hell.  Kate 

User
Posted 04 Apr 2024 at 19:16

Excellent news for you Deco. Enjoy your celebration drinks

Cheers

Bill

User
Posted 04 Apr 2024 at 19:39
Get on it Derek. You only live once ! Congrats 🙌
User
Posted 31 May 2024 at 16:46

Hi Derek

Haven't posted for a while. Pleased to hear you are over the hump and getting on the path to normality. Have a large malt!

Am awaiting my next 6 mo psa / testosterone check ( july). Let's hope it's still low. It would be a b-----ger if I had a recurrence on top of the myeloma! 

Am on 5 cycle of chemo for that but had a few days in hospital caused by a chest infection and collapsed left lung. OK now I hope  but 24 hrs waiting in A and E was an eye opener!

Haematologist optimistic about a remission, we wiilcross thatbridge when I come to it.

I suppose ishould now move to the myeloma website but having had so much information and support from you all I shall keep In touch pending my next psa test!

It seems as if our diagnosis and treatment were quite similar in many repects so look after yourself

Peternigel

 

User
Posted 02 Jun 2024 at 10:22

Hi Peternigel,

Sorry for not replying sooner but I’ve been away in Fuerteventura for the last 3 weeks and not so active on here.

I hope your PSA result is good and sorry to hear about your myeloma, I hope you get it sorted. Life can just be so cruel at times. A close friend of mine who I met at Maggies and was on the same PCa route as me got through his RT/HT fine and was immediately undetectable after RT. He was so happy but had to go into hospital back in January to have a couple of aneurysms repaired.  His kidneys were damaged during the Op and he also had a spinal stroke. He never recovered and sadly passed away at the end of April. It really affected me badly as we enjoyed many lunches together and we had formed a close bond…..we were both just on the same ‘wavelength’😊. We had lunch the day before he went into hospital at our favourite cafe by the beach, and I gave him a hug and wished him good luck. I will remember that day forever.

I’m doing ok at the moment counting down the days until Independence Day on 4th July when I will be free of Prostap. I’m not expecting miracles of recovery but hopefully slowly my aching and dysfunctional body will recover. Then of course we have the anxiety of ‘Will my PSA start to rise as my testosterone recovers?’.  I really don’t know how I would have coped without the support of everyone on here, all my friends at Maggies…and Sertraline, which has kept me on an even keel during the anxious moments.

Good luck for the future Peternigel and please keep us posted of your progress.

Derek

Show Most Thanked Posts
User
Posted 04 Jan 2023 at 21:51
Diagnosis

 I was diagnosed in June 2022 after routine blood test showed a PSA level of 36. In 2018 when I had my last blood test it was 3.6. TBH I should have gone to the GP sooner but then COVID struck.

I had a  Bone Scan(clear phew!), MRI Scan, CT Scan and biopsies. Diagnosis….T3BN0M0, suspicion of breaking into the RHS seminal vesicle.

 

User
Posted 05 Jan 2023 at 08:15
June 22nd 2022: meeting with consultant urologist at the Victoria Hospital in Kirkcaldy where I was told that surgery was not an option because of the danger of leaving some cells behind requiring Salvage RT.

 I also signed the consent form for HT and discussed Options on RT, which were 20 sessions of RT plus possible an HDR Brachytherapy boost. I didn’t find him very empathetic and helpful,  perhaps because surgery had been ruled out. Anyway, at least I am now signed up to start treatment. Given Bicalutamide tablets to take for 4 weeks with my first RT injection in 2 weeks.

 

July 6th 2022: Here we go…start of HT.  Appointment at the Vic for first Prostap3 injection. Injection in the left side and CSN explained that they do it on alternate sides.

Fairly uneventful, no pain or discomfort after it and feeling fine.

 

July 22nd 2022: Meeting with Oncologist at Western General in Edinburgh. Much more forthcoming than the urologist. He informed me that HD Bracytherapy Boost in addition to RT had been ruled out because my flow rate was not good enough. I mentioned that it wasn’t long since I had my biopsies when I had the flow test, so it was agreed I wou”d have another flow test ASAP.

Then he spring something new on me…the option of having 37 fractions rather than 20, where they would treat the whole pelvic area to include the locally lymph nodes, as well as the prostate and Seminal Vesicles. This completely threw me as nobody had mentioned this before. He indicated that the side effects would be worse but I could reduce the chance of recurrence,  although there was no clear evidence that this would be the case. I said I needed a short time to think about this with my wife to discuss and it was agreed that I would contact my CNS it’s my decision.

 

July 24th 2022:

Contacted my CSN to say that I had some questions I would like answered by the Onco. Also to arrange another flow test.  She said she would contact the oncologist. She tried this several times without success. I get a bit frustrated because I am ready to make a decision on treatment, I just need my questions answered to make that decision.

 

Aug 1st 2022: Severe anxiety kicked in, finding it really difficult to get out of bed in the morning. I have to sit with my wife for a considerable time just to get out of bed. She is so supportive to me, don’t know how I’m going to repay her. It gets better as the day goes on but it’s so debilitating, I just can’t function at all.

 

August 4th 2022:

After reading this forum and other peoples experiences, it appears that Sertraline has greatly improved their mood so I’m going  to phone my GP and ask to try it. He thinks it’s a good idea so prescribed me 50mg to be taken once per day. He warned me that it will take several weeks to be fully effective.

 

Aug 7th 2022: Due to fly out to Fuerteventura to our holiday home today but just can’t face the airport and flying.  Luckily it was a Ryanair flight and didn’t cost much so will just have to right it off. 

 

Aug 14 2022: After a few days on Sertraline I feel a bit better and feel I can cope with the journey so we rebooked and fly out to Fuerteventura today. A bit apprehensive but all went well and got our place in paradise to enjoy some sunshine and relaxation.

 

Aug 18 2022: A letter arrived from The Western with another appointment with the Onco…..on 25th November, 3 months away. I have no idea why I can’t have an appointment sooner so decide to speak to the CSN to see if it can be brought forward. I just want to make a decision and then get on with the treatment ASAP. I’m now thinking it may be next year before my treatment starts, which will be after 6 months on HT….maybe that’s no a bad thing?

 

Aug 25th 2022: Returned to Scotland after a good rest and chill. Palpitations are now greatly reduced but still felt really anxious during the holiday. Didn’t do much, just couldn’t face it and still find it difficult to get out of bed in the morning. 

 

Mid September 2022: Anxiety greatly improved. I feel much happier all round despite still now word from the Onco or answers to my questions about the treatment. I’m really impressed with the Sertraline, it really has helped me deal with the situations which would have brought on anxiety.

hot Flushes still a real problem though. I’ve read some reports that Sage Leaf can help so I’m off to Holland and Barret to get a supply.

 

Oct 5th 2022: Second Prostap Injection, this time in the RHS of the belly. PSA down from 36 to 3 which they are very pleased with. Spoke to the CSN about having to wait until 23rd November for another appointment and said she would follow it up and and try and get it brought forward.. I’m getting really frustrated now…it’s coming up for 3 months since my meeting with the Onco and still haven’t managed to speak to him about the treatment.

Spoke to the CSN about the Sage Leaf and she said they can help some people. I haven’t really noticed much difference, perhaps they have eased slightly but not enough to give me back enough QOL, will give it a bit longer and then investigate acupuncture.

 

Oct 23 - 9th November

Another trip to Fuerteventura- this time feeling much better and able to enjoy it. Again didn’t do much, lots of walking and enjoyed some lovely food and drink as well as sunshine. The weather is amazing, sunny every day with no wind which is unusual for Fuerteventura.

Flushes still an issue but no worse in the heat. They seem to start by a change of temperature. One day in the local Mercadona, I went into the freezer to get a bag of ice and WOOSH! Sweat pouring off me, quite embarrassing.

Had a great time though, hope to be back soon.

 

Nov 23rd 2022 - finally meeting with the Onco. This time two of them for good measure. I asked them the questions I had prepared 3 months ago. From the answers they gave, although leaving the choice to me, it was clear they were pointing me in the direction of 37 sessions. My wife and I looked at each other and immediately nodded to each other without any hesitation….37 sessions it is and I’ll deal with the side effects if and when they occur. Decision made at long last….very relieved about this and feeling good about it. They said it would be the New Year before treatment started but I might have the gold marker seeds implanted and the CT Planning session before the end of the year. 

 

Dec 6th 2022: First acupuncture session. Hoping this might help with the hot flushes. Really enjoyed it and came out feeling good. The acupuncturist was a really interesting character and very interested in me and how I was feeling.

 

Dec 7th 2022: Letter arrived posted on 28/11/22(thanks Royal Mail!) saying my gold marker seeds were to be implanted on the 8th December, the day after I got the letter. Still at least don’t have time to worry about it.

Seed implant 8th December

CT Planning scan 15th December

Radiotherapy starts 16th January.

 

Dec 8th 2022: appointment at Wester General to have Gold seed implanted. Biggest problem was finding. Parking space. All went fine and they inserted 3 seeds, one on each side of the prostate and one at the top, forming a triangle. Certainly felt them going in but not bad at all. Given 3 day course of antibiotics to take and told not to lift anything heavy for a few days. Felt slight discomfort in my pelvic area for a few days but it passed quite quickly.

 

Dec 14th 2022: Second acupuncture session. A lot more needles this time but still comfortable and again came out feeling good. I haven’t noticed any real difference after the first session but I know it can take 6 sessions to work.

 

Dec 15th 2022: CT Planning Scan. Western is good when attending for Cancer Treatment as they have designated parking and a security guard directs you a free space. Had to use an enema on arrival then drink 3 glasses of water and wait 30 minutes. After drinking the water I managed to convince myself I wasn’t goi g to be able to hold on that length of time, so I downloaded solitaire to my phone and completely forgot about the time until the radiographer called me in for my scan. All went well and I was on my way home within 30 mins.

 

Dec 21st 2022: PSA Test in prep for my next Prostap3 injection. Because of Christmas, won’t get the results until the 30th December. Hoping it might be done below 1 from 3 last time. I now know what Range anxiety is and it’s nothing to do with EVs!

 

December 28th 2022

3rd acupuncture session. After my last one I noticed a distinct improvement for a few days but then it tailed off a bit, but maybe it’s beginning to work?

 

Dec 29th 2022: Tried Viagra for the first time ever and it worked! Only problem is with No Libido, what do you do with it? Weird! Much prefer just being close to my wife with lots of cuddles and outercourse.

 

Dec 30th 2022: PSA result back. Down to 1.6 from 3. I’m a little disappointed it didn’t fall down below 1 but maybe I’m just being too optimistic?

 

Dec 31 2022: flushes have definitely improved, less severe and frequent. They now mainly only happen due to a change in temperature.

This has been an awful year for my wife and I and not just because of my diagnosis, so many personal tragedies and sad events. Here’s hoping 2023 is better
User
Posted 05 Jan 2023 at 08:18

1/1/23: A new beginning, hoping to kick this cancer in the butt! Feeling good and the hot flushes definitely improving. Maybe this a acupuncture is working?

User
Posted 05 Jan 2023 at 08:22

3/1/2023: feeling down today, I get the odd day lik this but know it will only last a day. Flushes bad today…interesting. Doe the mood make the flushes worse or vice versa? 
4th acupuncture session…and therapy. It’s really good being able to open up to someone who doesn’t know you but listens and offers advice. Lots of needles again and cam out feeling much better..

Edited by member 15 Jan 2023 at 21:07  | Reason: Not specified

User
Posted 05 Jan 2023 at 08:28

4/1/2023: I don’t know what the acupuncturist put on these needles but I’m bouncing with energy today! Feeling Great.

3rd Prostap Injection…..only 12(?) to go! You’ve just got to laugh!

the CSN was very happy with my PSA level but when I said I was disappointed that I thought it might be lower she asked me when I had the gold seed marker implants, and when I told her she said that having that procedure on the prostate could rise the PSA level. Happy with that explanation and feeling good.

went out for a good walk when home, avoiding the gym today after having the injection as a bit tender.

User
Posted 05 Jan 2023 at 12:55

Hi Decho,

thanks for sharing your journey so far

I am curious about the gold seeds you described. Is that normal practice for external RT? Or particular to your condition/treatment?

N

User
Posted 05 Jan 2023 at 13:25

Hi Nigel,

I am not sure if all centres do it, I haven’t heard a lot of people on here talking about it. Here’s an explanation I picked up a while ago….

To help us see the position of the prostate during treatment, we implant inert gold markers (also called fiducials or seeds) into your prostate. These markers can be seen on x-rays and confirm the exact position of your prostate - this improves treatment accuracy and may reduce radiotherapy side effects.

I also have the 3 tattoo markers one in the centre of my pelvis and the other 2 on my hips….this is to line me up on the table I think.

anything that may reduce side effects has my backing! They do it in the same way as they take transrectal biopsies but it’s much less prone to infection I am told. I was fortunate in that in Fife they take biopsies through the perinium which is much less prone to infection. Quite straight forward really, I did feel the needle going in but not bad at all. It’s the only gold I possess🤣 and I am told it does not set off the security alarms at airports thank goodness!

User
Posted 05 Jan 2023 at 14:07
Your treatment is very, very similar to what I had coming up on four years ago, Decho. My PSA was 32 on diagnosis. I had six months of HT, then (in my case) 32 session of RT with "whole pelvic" treatment to zap undetectable spread, then another 18 months of HT. I too found Sertraline very helpful in dealing with the mental side of being diagnosed out of the blue.

Four years later, and things are fine with me. My PSA is stable at just over 1, and life is good.

Wishing you all the best for your RT,

Chris

User
Posted 05 Jan 2023 at 15:05

Thanks Chris, I’ve been following your posts and they have been most helpful.

User
Posted 06 Jan 2023 at 21:39

Well that’s 3 days since my 4th acupuncture session and my hot flushes have definitely improved. They are not as frequent and are less severe.

I didn’t do much on Wednesday after my Prostap Injection as I was a little tender in the belly at the site of the injection. On Thursday and today I’ve been to the gym and a long walk this afternoon as it turned out a nice day. Only one minor sweat at the gym and nothing during my walk. Long May it continue!

User
Posted 06 Jan 2023 at 23:40

Hi Decho I switched from Prostap 3 jabs in my belly to the thighs a while ago, finding it much more less discomfort in the legs than the stomach.

 

 

User
Posted 12 Jan 2023 at 18:02

Been a good week for flushes, spent a couple of nights away at Crieff Hydro just chilling before my RT starts on Monday.

Had my 5th Acupuncture session today and I always come away feeling great. It’s not just the needles either. Some acupuncturists seem to just stick the needles in and leave you for 45 mins but not this guy. He talks and listens and you can talk to him about anything and everything….I call him my Therapist😊 I also have report that my flushes continue to improve, much less frequent and less severe when they do come…they are now manageable and not nearly so debilitating. I’ve not changed anything else, still take the Sage Leaf although I am not convinced they are helping, so I can only assume that the acupuncture IS making a difference….long May it continue.

tenderness following my recent Prostap injection now gone but have to say each one seems to be more uncomfortable than the last….maybe I should have kept away from the gym for a couple of days? Will remember that next time.

Off to the Maggies Mens Cancer support Group tomorrow and looking forward to meeting up with the guys again.

 

Edited by member 12 Jan 2023 at 18:07  | Reason: Not specified

User
Posted 12 Jan 2023 at 20:36

Hi Decho 

sounds like things are moving along for you

I have my first Prostap injection tomorrow and at last I have an appointment with oncologist on Tuesday.

I imagine I might have some questions and / or opinions Tuesday night 😉

N

User
Posted 12 Jan 2023 at 21:22

Hi Nigel,

Sounds like things are moving quite quickly for you, which is good because it’s the waiting that causes the biggest problem. Things were going fine for me until my first meet with the oncologist when he sprung the surprise of 37 fractions as an option..there then followed a 5 month delay in getting another appointment where I could ask my questions about the RT. Mind you being on HT for 6 months before RT is no bad thing from what I can understand.

good luck with your Onco meeting and I hope you get your treatment plan sorted.

One bit of advice I would give anyone who’s suffering from mental health issues because of this disease…don’t suffer in silence, speak to your GP.  Its a long journey through HT/RT/HT and the HT had a devastating effect on my mental health. A low dose of sertraline did wonders for my anxiety, as it has for other members on here.

User
Posted 12 Jan 2023 at 21:37

hey Decho

we will see what they say next week but if it is 37 which I suspect it will be then I will have to take that down south 

I can not see 120 plus miles every day as doable so I will have to go through it here on my own.  have to be realistic.

I am lucky in that I have access to this great forum and understanding colleagues 

N

User
Posted 13 Jan 2023 at 18:36

Gutted!😟😟😟

I was at the cancer support group this morning and got a phone call from an Edinburgh number I didn’t recognise.
My phone was on silent and I couldn’t take the call in the meeting, so I excused myself from the meeting and tried to phone back just in case it was the Western….unfortunately the number was one which would not take incoming calls!  No message was left either!

When I got home I dug out all my letters and found one with the number of the Oncology Department so I called them. They looked up my records and found that my date had been moved by a week from 16th - 23rd. Thy also said it looked like the Oncologist had tried to phone me but they didn’t know why my date had been moved.

My initial thought was that maybe they were just running a bit late but I was so disappointed as I was all psyched up to start the RT on Monday. However in the overall scheme of things a weeks delay in starting RT is neither here not there, so just went out for a long walk.

I then got a phone call from the Oncologist at 5.30pm who explained that when they reviewed the treatment program they were concerned that there was too much radiation directed at the rectum, so they needed a few days to re-program and review once again. I am to get a call next week with a new start date.

Whilst I am pleased that these checks are in place I just cannot understand why it’s left to the day before(in effect) my treatment starts to tell me this. We go through enough anxiety and stress on this cancer journey without having to deal with these unexpected and unwanted ‘surprises’. 
Thank God for the Sertraline….and a nice large Edinburgh Rhubarb and Ginger Gin!

 

User
Posted 13 Jan 2023 at 19:43

Hey Decho

thats is disappointing but as you say it is for the best. 
I Imagine  you will be over the disappointment by tomorrow.   Hahaha so much for gold seeds eh!!!  I guess it is for the best.

first Prostap jab today, I was allowed it in the arm/ shoulder  which apwas a boost as the nurse felt I had enough muscle there to take it!!  You have to take these little wins 🤣

Weirdly I can’t wait for oncology appointment on Tuesday.  How sad is that?

N

User
Posted 13 Jan 2023 at 20:55
Weirdly I can’t wait for oncology appointment on Tuesday. How sad is that?

I remember it well when I had my RT , I was looking forward to it every session , seeing everyone in the waiting room we were all in the same boat different sort of cancers receiving RT , sat there, most talkative , drinking water , eating chocolates , some punters doing jigsaws !!! Calling out your name to the treatment room, after the session rushing to the toilet for a pee , couple of the lads cheering !!!! It was like a big family really . Obviously I respect any punter who didn’t want to join in any banter !

User
Posted 15 Jan 2023 at 13:59

What a Roller Coaster ride this is! Yesterday I was wiped out, so fatigued, my muscles were all sore, I even kept falling asleep during the Manchester Derby! Worst day I’ve had in a long time!

Today I’m bouncing with energy, been out along the beach with my grandsons and then brunch with them..They bring me so much joy.😊

Why? Don’t know? Did I do too much the day before? Was the news about the delay in treatment causing me stress? Effects of the acupuncture wearing off?

One thing I’m learning though as I’ve said before….‘Don’t let this disease and treatment define you’. Just accept you’ll have bad days and just rest, chances are the next day you’ll feel MUCH better.

sorry if I’m boring anyone with my feelings but I think it’s important as mental health is such a big factor in getting through this!

User
Posted 15 Jan 2023 at 14:10

Mentally tough as well as a physical one  never a day goes by when I don't worry about it all 2 years in after r/t and h/t psa has been steady at 0.01 but every twinge   bruise swelling ect you worry but have to realize we can't control it and we are getting older along the way good luck with your treatment and stay as positive as possible gaz 👍

User
Posted 15 Jan 2023 at 20:32
Those readings are great after treatment you had , I see it all good !
User
Posted 19 Jan 2023 at 10:45

Hi Malcolm

Sounds very like my RT experience at St Lukes, Guildford June 22. I liked driving down there after the mini enema and 400 ml water. Free parking for onco patients. Good banter in the waiting area, hoping your session was on time after all that water! 

Yes, I had fiducial gold markers plus tattoos to ensure a good aim with new, advanced linac. Being manhandled by pretty radiographers was pleasant but the zoladex rather spoilled things. It was great to Ring the Bell 3 times after my last session and wave goodbye (I hope!).

Stopped zolly 6 mo ago but side effects still with me, fatigue and aches and pains. Psa still  below detection limit but so is testosterone which may account for the side effects.

Only downside is some radiation proctitis which will be treated shortly.

My journey started about a year ago diagnosed T3b n0m0 G9 so a bit worried . Progress so far is good and as I am 79 I have stopped worrying.

Good luck to all of us.

Peternigel

User
Posted 19 Jan 2023 at 11:37

Yes all good at the moment 🤞

User
Posted 19 Jan 2023 at 16:44

More bad news and I am devastated at yet more delays.

just had a phone call from the Oncologist….they redid the plan but he’s still not happy that too much radiation is going to the rectum. He says they could go ahead but he feels the side effects could be too severe to justify treating the whole pelvic area. He’s ‘not that kind of doctor’.  He said some peoples organs are just not right for this. So, he’s sending me for another MRI scan to see how much the prostate has shrunk and then I see him again in 6 weeks time to discuss whether to have a 20 session treatment targeting only the prostate and seminal vesicles.

I asked about getting a PET PMSA scan to see if there was any spread to the lymph nodes but he said they are normally only good at detecting spread in other parts of the body. I don’t understand this from what I’ve read on here?

I really don’t know what to do next….

Help!

Edited by member 19 Jan 2023 at 17:05  | Reason: Not specified

User
Posted 19 Jan 2023 at 21:58
Decho, in one way, how frustrating. But at the same time it must be good to know that the oncologist cares enough to get it right for you.

If you are on HT, the cancer shouldn't be going anywhere anyway while you wait for the next MRI scan. In fact I wonder whether PET would pick up mets once you are on HT - does anyone know?

User
Posted 19 Jan 2023 at 22:27
I think I understand the onco's position although s/he perhaps hasn't articulated it very well. PSMA scans are not recognised so much for their diagnostic ability in the pelvic area as they are for identifying mets at very low PSA readings when there is a recurrence. As it is, if you do have micromets in pelvic lymph nodes, these are unlikely to show up on a scan when you have been on HT for 6 months.

On the up side, the 37 sessions was rather sprung on you last year as an alternative treatment option on a belt & braces approach rather than because your diagnostics showed that it was necessary; initially, you were expecting 20 sessions aimed at the prostate. So the issue is that plan B, which was dangled before you, now appears too risky and you revert to plan A. Frustrating for you but maybe in a few months you will look back and be pleased that the choice was taken out of your hands.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jan 2023 at 22:59

Thanks Lyn and J-B for putting this into perspective, this forum is so helpful to me on this journey.

it’s just the delays that get to you, you get all geared up for treatment (even did a dummy run to the hospital today to check timings and roadworks) ….and then everything changes.  Now there’s going to be another few weeks delay getting another scan and then appointment with the Onco…and then wait for a date for RT.

looking on the bright side, hoping now to fit in another trip to our place in Fuerteventura for some sun and chilling out!

User
Posted 19 Jan 2023 at 23:07
That sounds like a wonderful silver lining
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2023 at 19:14

This journey just get weirder….

A strange calm and peace has descended on me today and I feel really good!

Maggies Cancer Support Group this morning and came away(as always) inspired by some of the members of the Group. Helps put things in perspective. Talking and listening (including here) is just so helpful to get through this.

User
Posted 20 Jan 2023 at 19:46

Hey Decho 

hope you are feeling okay

i was convinced from your plan that I was destined for 37 fractions and pleased that the Oncologist said only 20 was needed. I do have several lit up lymph nodes in the pelvis. he explained that the additional number of fractions did not change the outcome as the cumulative dosage was the same and there was no evidence to suggest extra fractions improved the outcome. I think I read on here how the greys are calculated but can’t remember where. I think it is just they give a little more each time.

N

Edited by member 20 Jan 2023 at 19:47  | Reason: Not specified

User
Posted 20 Jan 2023 at 20:00

Thanks Nigel,

I’m feeling good(not allowed to say fine!).

I was convinced that having 37(39 as it turned out) fractions would mean possibly less chance of recurrence. However, there was no sign of anything in lymph nodes so it was regarded as a preemptive strike just in case some micro-mets had not been detected, especially as my PSA level was 36 on diagnosis.

I think from the Onco’s point of view he felt the risks of the 39 sessions outweighed the risk of recurrence.

TBH though I think subconsciously I was concerned about the effect of the 39 sessions, so maybe that’s why today I am feeling good. I am all set up with tattoos and fudicial  markers to zap the prostate and Seminal Veiscles. I just now have to get this MRI scan over with and hopefully nothing else will show up….and I can just get on with it🤞

User
Posted 20 Jan 2023 at 20:18

Decho 

I find it frustrating that your oncologist view is different. I want to believe mine. jeez Louise !! 
Can they both be right? I know I have cancer in many nodes I have seen the PET scan so why would he think 20 is okay and yours does not ??

this is where the fear comes from I think 

N

User
Posted 20 Jan 2023 at 20:45

Nigel,

I’ve not had or been offered a PET scan so I don't know if anything would have showed up.

I’ve only had a Nuclear Bone Scan(clear) and MRI(nothing in Lymph Nodes), then  biopsies.

From what I understand PET scan is more detailed than MRI, so might show up things that an MRI doesn’t, but I’m no expert.

We are in their hands and just have to accept they are acting in our best interests. I do think that poor communication skills sometimes leave us in a confused state, that’s why this forum is so useful. I think a lot of people just accept what they are told and get on with it, but I come from a background in software engineering and need to know WHY? When I questioned something I was told I was overthinking it, which may be true but it’s MY life we are talking about so I need the answers, like WHY do I need another MRI…and WHY could they not come up with a plan of 39 fractions which was safe form severe side effects. Not getting answers to ‘WHY’ has been part of the problems with delays in my treatment.

Derek

User
Posted 20 Jan 2023 at 21:18

I take from your post a sense of frustration we all feel

i think in my case something was showing in MRI that demanded a closer look 

it was interesting that the surgeon stepped back and said no  but this was in the MDT review and it makes sense to me 

I do wish that this meeting was documented in some way and shared with the people it affects

User
Posted 20 Jan 2023 at 21:36

Nigel,


Ok, I see about the PET…makes sense I guess.

My urologist said NO to surgery…too much risk of leaving something behind requiring salvage RT, but I note from other members that some seem to have a higher staging level/Gleason than me(us) and still get offered surgery. I never really got an answer as WHY surgery was ruled out without giving me an option. There’s that ‘WHY’ again!

As far as the MDT is concerned, I’m not sure what part of the country you live in, but in Scotland you are entitled to ask for your Medial Records from your GP. I wanted mine for the last 5 years for Travel Insurance. These records included a record of the MDT meeting.

Derek.

 

User
Posted 20 Jan 2023 at 21:36

Originally Posted by: Online Community Member

Decho 

I find it frustrating that your oncologist view is different. I want to believe mine. jeez Louise !! 
Can they both be right? I know I have cancer in many nodes I have seen the PET scan so why would he think 20 is okay and yours does not ??

this is where the fear comes from I think 

N

 

N, you will drive yourself round the bend! You seem to be imagining RT as a linear thing - limited PCa with no lymph involvement = 20 fractions, PCa with lymph nodes zapped = 37 fractions. That is just not how it works - if it was like that, we would see men with very small tumours having 10 fractions and a man with a really big prostate having 50! Weirdly, the opposite can be true - a man with advanced PCa may have 1 or 2 sessions just to reduce some bone pain and a man with a T3 / T4 having 5 or 6 fractions at 6Gy! 

Some oncos will use 20 fractions at 3Gy / 3.2Gy for all radical RT - some will only use it for men with T1 / T2 but perhaps at a lower dose than 3Gy - some will only use it for adjuvant or salvage RT. 

Some oncos will use 37 fractions (or even 39 in Decho's onco's case) at 2Gy for all men - some will use 37 fractions only for men with pelvic node involvement - some don't do 37 fractions at all now (for example, because of changes to procedures since Covid and the drive to reduce the number of visits each patient makes to the hospital) 

Some oncos will run 30+ fractions for a man with local spread - 20 or 25 fractions delivered as normal and then a few additional fractions aimed just at the nodes or just at the heaviest load in the prostate.  

 

You are trying to rationalise the random ... oncos have different preferences and NHS trusts may also have developed different approaches. The fact is that 37 x 2Gy (74Gy) delivers more or less the same amount of killer rays as 20 x 3.2Gy or 6 x 6Gy and a personalised computer programme determines how much killer dose is delivered to which bits of the pelvis. Your onco and Decho's onco can therefore both be right!   

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2023 at 21:55

Lyn. I get it 

just not happy with what appears to me and my life as guess work.

 Thank you for your insight 

some days I feel confident and then I hear the different opinions and that creates doubt 

so what next?   I have a plan and I hope for the best  

 O better than that. I won’t let it grind me down

User
Posted 20 Jan 2023 at 22:09

PS

i am basically a problem  solver 

in industry and last 10 years in gov work and I struggle with this.   I understand I really do but doesn’t stop me being frustrated as I can not solve this. Just have to suck it up I guess 

User
Posted 21 Jan 2023 at 01:43

😂🤔🤯

The serenity prayer

"God, grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference."

Very useful when dealing with Government departments on a regular basis! 

 

Edited by member 21 Jan 2023 at 01:44  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jan 2023 at 06:57

This may help explain the difference in number of treatments:

https://www.google.com/url?sa=t&source=web&cd=&ved=2ahUKEwjyuPWyidj8AhWQilwKHUTlB1UQFnoECAgQAQ&url=https%3A%2F%2Fwww.rcr.ac.uk%2Fsystem%2Ffiles%2Fpublication%2Ffield_publication_files%2Fbfco193_radiotherapy_dose_fractionation_third-edition-prostate-cancer_0.pdf&usg=AOvVaw1eHNRI67VxzKywvqgHom5j

 

 

 

 

 

 

 

Edited by member 21 Jan 2023 at 07:01  | Reason: Not specified

User
Posted 21 Jan 2023 at 08:17

Thanks Lyn for the giggles 🤣

Thanks Francis for the link

N

User
Posted 23 Jan 2023 at 16:00

Sixth and last(for the moment) Acupuncture session today, needles everywhere including my ears! I don’t care though because I am sure it has made a difference. I did however stop taking sage leaf for a few days last week and my mood definitely was not as good, although perhaps that was down to all the stress I’ve been through the last few days. Back on it now and mood is good.

Been out on my ebike this afternoon for a short ride(20 miles) and it was so good to be back cycling, I haven’t been out for a few weeks because of the weather and didn’t want to risk it before my treatment started(or not!) The weathers suppose to be ok for the rest of the week so hoping to do a 40+ miler sometime. Also found it very good for my leg muscles which have been aching a bit since my third prostap injection.

User
Posted 30 Jan 2023 at 15:10

My CNS has just phoned….God Bless these people, they are just so helpful.

She has just seen the letter from the Oncologist about the concerns on my 39 sessions. Apparently when the Oncologist discussed the plan with his colleagues they all thought treating the whole pelvic area was not worth the high risk of damaging the bowel and rectum. I am still at a loss as to why some people are ok for this whole pelvic area treatment and others are not, but I will be asking him when I have my next appointment. So now the plan is for 20 sessions to treat only the Prostate and Seminal Vesicles. The purpose of the MRI scan is to check how much the prostate(and presumably tumour) has shrunk. As my PSA test was still 1.6 I may have to wait longer to have the RT…they like it to be below 1 but I guess the scan will show what’s what. I’ve to get another PSA test a week before the Onco appointment on the 24th as the last one was done shortly after my gold marker seeds implant which could give a false reading.

My MRI scan was due in the 14th but I phoned them up and got a cancellation on Wednesday which is good…..might just manage a few days in Fuerteventura as there’s a flight on Thursday.

Been out on the bike today, cold here in Scotland but lovely and sunny so feeling good.

User
Posted 13 Feb 2023 at 20:12

So, following the earlier MRI scan on the 1st (God bless the NHS!) we managed to book flights to Fuerteventura on the 2nd and arrived back today. Should have been yesterday but my wife andI both caught some stomach bug and i was violently sick on Saturday night and could hardly stand on Sunday. A day of rest, fluids and electrolyte drinks and I was better by evening and managed to get seats in a flight today.

still getting issues with my gut but slowly improving.

10 days away was wonderful, the heat, the sunshine and the vibes of Corralejo really makes you relax. Unfortunately a Calima set in the last couple of days but still able to walk about In shorts and T shirts.

Did lots of walking up to 20k steps a day but started to get some joint ache and stiffness so decided to tone it down a bit. Many people say on here not to overdo it and I think I’ve learnt a valuable lesson. Can’t wait to get out on my ebike on Thursday after my PSA test(as I don’t want anything affecting it). It’s great exercise and not as much strain. Also back to the gym tomorrow.

Funny how this 3rd Prostap injection has changed things, I’ve had more issues than with the other two…one good thing though is that my flushes have massively improved. Wierd!

So, Onco appointment on 24th Feb and hopefully I can finally get an RT treatment plan in place.

Edited by member 13 Feb 2023 at 20:13  | Reason: Not specified

User
Posted 13 Feb 2023 at 21:11

I'm glad you're enjoying yourself. Prostate cancer can be a nuisance, but our primary duty should be enjoying life not fretting about cancer.

Dave

User
Posted 22 Feb 2023 at 15:36

Latest PSA result back today….1.3…after 8 months on Prostap.

so 36(at diagnosis) to 3 (3 months) to 1.6(6months) to 1.3(8 months)

Bit disappointed as hoped it would fall below 1, see the Onco on Friday and I think he likes it to be below 1 before starting RT. Hopefully he will be happy enough with the MRI scan to start RT🤞

User
Posted 22 Feb 2023 at 16:33
Good news that it's still going in the right direction though.

Fingers crossed for Friday that you can get your RT started.

Best wishes

Elaine

User
Posted 23 Feb 2023 at 09:45

I hope you can get the radiotherapy started Decho, 8 months on HT seems long enough before starting RT. 

Ido4

User
Posted 23 Feb 2023 at 14:49

Thanks Elaine and Ido4,

here’s hoping.🤞🤞🤞
I think what’s concerning me is the rate of slowdown in my PSA dropping.
First 3 months average daily drop was 0.36, next 3 months 0.018, last 2 months 0.004
At this rate it will never get below 1. Many questions spring to mind…

Does it matter it it doesn’t get below 1?
Do some people have a naturally higher PSA than others?
Has the cancer already started to resist the HT?

if anyone can shed any light on these questions I’d be most grateful.

 
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