I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
ο»Ώ

My Journey through HT and RT

User
Posted 23 Aug 2023 at 21:13

Great result Derek.. just read all your posts on your RT journey.. well done for sharing this with us it was excellent and very informative.

I am in a dilemma.. I’m 55 with a Gleason if 5+4 t3b N0M0 so far although paying for a PSMA pet scan hopefully within a week to confirm this. 
I have spoken to two urologists regarding treatment. The first has recommended a radical prostectomy and the second seems to be steering me to RT as he said that I will Probably need SRT after the surgery anyway! 

Could I ask if anyone could give me the pros and cons to both.. like everyone I am hoping to beat the horrible disease but wanted followers opinion on both treatment..

thank you and best of luck to you Derek and everyone 

Mark

User
Posted 23 Aug 2023 at 22:37

Hi Mark,

Thanks for your kind words, it’s much appreciated. I saw my oncologist today, who, for a change, was quite chatty and helpful. Maybe because it’s the first time I’ve seen him without a mask! Anyway he’s quite happy with my current results. He said it may go down further after 6 months, but the important thing is that the PSA doesn’t rise to more than nadir +2.0. I did feel he dismissed my issues with joint ache…he said possibly down to just my age…sorry but that’s nonsense, these problems started after my HT jab back in April, just at the start of RT.

You face a difficult decision which you wouldn’t have to make in Scotland as you wouldn’t be offered surgery. It always bugged me that surgery was excluded for me, but at one of the meetings with my Maggies PCa support Group, I brought up this subject and the Maggies support specialist(who was previously head  CNS for PCa) explained it to me. She said that there was a good chance that SRT would be required with my staging if I had RARP, and that having to deal with recovery from RARP and at the same time as the side effects of HT/RT is simply not worth the it, as the outcome of both treatments for me would be quite similar.

Well, that’s it in Scotland, is it for the patients benefit, or for financial reasons? I have no idea, but having it explained to me helped me put it into perspective and accept it. And although I get a bit envious whenever I hear one of my many friends at Maggies say how pleased they are that they had RARP and how successful it’s been, I just have to kick myself in the rear end and get on with it.

I wish I could advise you but that would be a mistake…which is why I guess the experts leave the decision to you. Maybe after your PET scan it will make things clearer for you.

There is no doubt in my mind that if it was clear to me that it was contained within the prostate I would have opted for RARP. Get rid of the mothership and deal with the side-effects of ED and recovery time…I’m retired so recovery time is not such an issue but ED is(despite my age🀣), but you need be proactive about ED…i think this is very important no matter what treatment you opt for.
However with T3b?  Not sure what I would have chosen if I HAD the choice TBH.

You’ll have read from my posts that I’ve had a multitude of side-effects, not from RT but from HT, everything from Hot flushes to Peyronie’s disease…most of them I can live with and find ways to help, but so far the joint ache is the one that bothers me most, as if it gets much worse it is going to seriously affect my QOL…and I haven’t found a solution yet. Strangely enough though I cycled for 46 miles on my ebike on Monday and my knees were really good that evening! Weird! I’m determined as hell though not to let this stop me having fun and making the most of every day. There is no doubt that PCa has changed me but in many ways it’s for the better😊

Sorry for my rambling post..I’d be happy to speak to you more if you PM me or we can have a chat by phone if you think it would help.

All the best whatever choice you make!

Derek

 

User
Posted 24 Aug 2023 at 05:44

Originally Posted by: Online Community Member
I’m 55 with a Gleason if 5 4 t3b N0M0 so far although paying for a PSMA PET scan hopefully within a week to confirm this.

Mark, I would suspect that the 3b will mean you aren't given a choice [because the cancer has spread outside the prostate and maybe to the seminal vesicles]. If the cancer has indeed spread beyond the prostate, surgery is most probably not going to remove all of it. As someone who's been through the RT/HT path, I'd say that while it's not a barrel of laughs while you're in there, it does do the job and when you finally come out the other side you could well become a strong advocate for the RT/HT path. Maybe it's not surprising but if a treatment works, whether it be RT or a prostatectomy it does tend to create supporters for that approach in the aftermath.

RT today is significantly better than it was yesterday and is constantly improving with better targeting and even the ability to hit nearby lymph nodes if there's a problem there. There is some risk that RT at your age could lead to problems later in life but again, improvements in RT are resulting in treatment that causes much reduced chances of damage to nearby organs. As a high risk G9 person with some lymph mets I was blasted with a considerable amount of RT a couple of years back but I've had absolutely no adverse side effects [such as radiation proctitis] and now 8 months post the end of HT my psa still sits as <.01, so RT is rated as "with curable intent" and if you have to go that way you've got nothing to fear.

 

Jules

Edited by member 24 Aug 2023 at 07:43  | Reason: Not specified

User
Posted 24 Aug 2023 at 06:02

Originally Posted by: Online Community Member
I did feel he dismissed my issues with joint ache…he said possibly down to just my age…sorry but that’s nonsense, these problems started after my HT jab back in April, just at the start of RT.

Derek, I don't think there's any doubt that HT causes side effects that Drs aren't happy to acknowledge. This is going to vary from person to person but I had trouble with leg pain and leg nerve twitching which my Dr said was not connected to the HT. After a badly inserted injection gave me a rapid release of Zoladex [not the same drug you're on I know] the symptoms ramped up markedly, so at least I knew that I wasn't imagining things or otherwise declining. 

The good news was/is that some symptoms become more tolerable as you "get used" to HT, though it's great to get off it. The further good news once you do finish your HT is that while it takes some time to get back to normal, there can be an instant improvement in terms of removing the supposedly non-existent side effects of HT. I'm talking beyond the obvious one of complete loss of libido.

Go the cycling! I got sick of being down on cycling strength and along with that, struggling to keep up with friends and bought an e-bike ... fantastic! I was going to hold off until I hit 80 but there's no way I'm going back to a standard road bike now.

Jules

User
Posted 24 Aug 2023 at 15:50

Thank you so much for the messages Derek and Jules.

I have my PSMA scan booked in tomorrow so will hopefully know where I am after the results of that. 
Will keep you updated.. 

All the very best to you both 

Mark

User
Posted 24 Aug 2023 at 21:02
Excellent results Derek. Keep going pal.
User
Posted 03 Sep 2023 at 20:45

Had a follow up meeting with the ED nurse on Thursday to discuss how I was getting on. I explained that I could not get as good erections with the pump as I do with foreplay so she made some suggestions about using the pump. She said I should be getting firmer WITH the pump. So I will need to keep practising.

Ive now been on Tadalafil and Vitamin E tablets for a a couple of weeks. Something is definitely helping with my flushes. I can’t see the Tadalafil doing anything so it must be the Vitamin E. my flushes are a lot less frequent anot nearly as intense, I can even cuddle my wife in bed without going into overheat!

I’ve got another follow up on 25th…excellent service once you get onto the bandwagon.

User
Posted 04 Sep 2023 at 17:52

Well, I’m ashamed to say my weight loss is not going well. I behave during the week but at weekends I lapse and the bottle of wine or gin comes out. I’m embarrassed to say I haven’t lost any weight since I posted on 13th August…well I did actually lose weight then put it back on😑

So my wife and I have given me a severe kick up the arse…no more weekend lapses. I have until the 15th to show some improvement ….I know it can be doneπŸ’ͺπŸ’ͺπŸ’ͺ

User
Posted 15 Sep 2023 at 09:31

Chuffed to bits today…I have lost 4.5Kg, all since shaming myself on the 5th September…on that day I was 99.8Kg and am now 95.25, that’s the lowest I’ve been since January!
Ive not starved myself either, even allowed myself a G&T at weekend. Generally my diet has been…
Breakfast:
Banana Herbal Life shake or porridge, scrambled egg brown roll on a Saturday as a treat.

Lunch:
Herbalife Shake with frozen Strawberries and blueberries…or if I’m out a Herbalife Meal Bar

Dinner:
Normal dinner….I even had Haddock and chips(just a few) last night!

For snacks I have Herbal life lemon or almond chocolate bars which are lovely. I had a G&T (light Fever tree) each day over the weekend along with a few unsalted cashews. And also eat lots of fruit. I still have my one Caffeinated coffee a day as it makes me feel good😊

I am exercising regularly at the gym, in the pool, walking and cycling…but I was doing that before anyway so most of the weight loss is down to diet.

I feel so much better, my joint ache is improving(interesting πŸ€”πŸ€”πŸ€”) and I am determined to lose more.

It’s my Maggies PCa Support Group today so I can go in with my head held high. My target for the next meeting is 92Kg

 

Previous results were:
Weight 99.3kg😟😟
BMI 27.2😟
body Fat 24.5%πŸ‘
Muscle Mass: 71.35kg
Muscle Quality: 58😊 (apparently I’m muscular🀷🏼‍♂️)
Body Type: 5πŸ‘
Bone Mass:3.7Kg😊
Visceral Fat: 14 😟😟
BMR: 2.192kcal
Metabolic Age: 52 😊 (I’m just a young thingπŸ˜‰)
Body Water: 46.1%😟

My vital statistics on the Magic Scales this morning are:

Weight: 95.25Kg                    πŸ˜ŠπŸ˜ŠπŸ˜Š
BMI: 26.1
Body Fat: 21.5
Muscle Mass: 71.1Kg
Muscle Quality: 65MQ
Body Type: Average.        That’ll do me
bone Mass: 3.7Kg
visceral Fat: 12.5.              Needs to come down
BMR: 2170 kcal
Metabolic Age: 52.           Young at heart AND body
Body Water: 46.7%.         Need to drink more (water!)

Next reporting date 17th November.

Edited by member 15 Sep 2023 at 09:35  | Reason: Not specified

User
Posted 15 Sep 2023 at 16:15

Good result Derek. I've been on HT for 5 years now, was 12 stone for 20 years prior to PCA diagnosis but put on 1.5 stone very quickly although my weight seems to have stabilised at 13.5 stone. Drinking too much beer doesn't help I've gone from 34" to 38" waist but we're out in Spain a lot and the heat cries out for a cold Mahou or Alhambra beer.

Need to work a bit harder this winter to shed half a stone.

User
Posted 05 Oct 2023 at 22:33

Today marked the half way point of Prostap 3 injections, 6 done and 6 to go. I feel like I’m wishing my life away counting down the  implants until they are finally DONE, I can’t wait for that day!
All went without incident,  although I laid it on thick with the CNS about my joint problems, so she is going to speak to the head nurse to see if she has any ideas…that I haven’t already tried! I did mention trying another drug but she said the Prostap 3 was the kindest as far as side effects go. All I can say is I feel sorry for anyone who is on the other drugs. I think I will just have to live with it but I’m not giving up, ‘I MUST NOT LET THIS DISEASE(or treatment) DEFINE ME! ‘.  I’ve been to see my physio who’s given me ideas on how to build up my muscles, and the next step is to go and see my acupuncturist.

 Another phone call from the ED nurse yesterday and I was able to report that I’ve finally got to grips with the vacum pump.  I must say that the help I’ve been given by the ED clinic is first class. The nurse is just the right person for the job, you feel completely at ease with her light hearted but informative approach, which is VERY refreshing.

I Watched a very interesting webinar tonight by PCUK ‘Prostate Cancer and your sex life’. It was good to hear the experiences of Chris, a member of this forum (but not sure which one😊). He shared his own personal views and experiences.

Maggies tomorrow morning so  know it’s going to be a good dayπŸ’ͺ

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 πŸ˜€
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 itπŸ’ͺ. Hot flushes are much better now with me.

All the best,

Derek

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 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!πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺ

Derek

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 πŸ‘

User
Posted 11 Dec 2023 at 23:01

Great news, that's excellent!

User
Posted 12 Dec 2023 at 00:45
πŸŽ‰πŸ»πŸ·
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Dec 2023 at 01:09

Excellent news.

 
Forum Jump  
©2025 Prostate Cancer UK