My husbands recent diagnosis of advanced prostate cancer

User

Posted 27 Jul 2023 at 15:55

Originally Posted by: Online Community Member

Hi Elaine sorry you have to begin treatment again but some good news with the scans I had 2 years of decapeptyl along with radiotherapy and found it all tolerable and worked all the way through with minimal side effects I was told decapeptyl was the best treatment available good luck with your treatment plan gaz 👍

Thanks Gaz, really hoping Rob has a similar experience to you and all of this will be over and done with soon 🙏🏼

User

Posted 27 Jul 2023 at 16:10

I am sure he will good luck with his treatment 👍

User

Posted 27 Jul 2023 at 16:22

Originally Posted by: Online Community Member

Elaine, hope it works out well for you both.

Thanks Chris

Thank you Chris, appreciate your support as always x

User

Posted 27 Jul 2023 at 16:28

Originally Posted by: Online Community Member

Hi Elaine,

Obviously not good that you guys have to go through this nonsense, but im picking up a positive as possible vibe from your post. Hang on to that as best you can Mrs.

Wishing you the warmest,

Jamie.

Thank you Jamie, yes we know things could be much worse and are always grateful for that. Of course we would prefer not to be here just like everyone on this site. Getting Rob prepped now for treatment to keep him as fit and healthy as possible x

User

Posted 27 Jul 2023 at 16:36

I am sure he will be fine had no problems with my 37 sessions off radiotherapy I little tired towards the end had a mindset at the time to just get on with life had radiotherapy at 8.00 every morning and went straight to work after each session had the hormone therapy every 3 months and just plodded on nearly 2 years on and more or less back to normal do have the guilty thoughts like Andy and always fear it could change but try to carry on as normal as possible

User

Posted 27 Jul 2023 at 17:51

Sorry to hear the news Elaine and you do set such a positive tone but I imagine it takes a lot of energy to do that especially when you know what your OH has to go through. I’ve a feeling we might be following in your footsteps in a few weeks time so do keep us posted about how it’s all going.Good luck with it all both of you x

User

Posted 27 Jul 2023 at 18:07

Originally Posted by: Online Community Member

You're doing great Gaz and certainly no guilt should be felt. I honestly just love seeing if you guys put good news on here and I’m sure everyone feels the same. I’m not sure the fear will ever go away but I assume it gets easier the longer you stay in remission and as long as you keep on living and loving life then that’s all good 👍

User

Posted 27 Jul 2023 at 18:15

Originally Posted by: Online Community Member

I think it’s ups and downs Kate, I think I’ve been expecting this for quite some time and have prepared us a bit for it. I’ve also heard some really sad stories recently (not relating to prostate cancer) but it does make me realise we are still lucky and things could be worse. I never wanted Rob to have this treatment but the thought that this treatment wasn’t an option as it had gone too far gave me perspective and feel we’d be silly not to grab it. You never really know if you’re making the right decision though.

No reason at all why you will be following in our footsteps and really hope that you don’t. There’s definitely a chance the surgeon got it all and just have to keep believing that until you’re told otherwise. We’re 2 years on from diagnosis this week and 18 months since op so we’ve had some time to be able to get on with and enjoy life again.

Really wishing you both all the best, and will look out for your updates xx

User

Posted 01 Aug 2023 at 10:36

Does anyone know….is there a standard time between RT planning scan and starting RT itself? We’ve had a date for the planning so just trying to work out roughly when when RT will start and finish.
Thank you x

User

Posted 01 Aug 2023 at 11:31

Hi Elaine

I had gold seed markers followed by planing CT scan 10 days later and starting RT 4 weeks after that. RT was 20 fractions over 4 weeks.

Hope that's a help

Peternigel

Edited by member 01 Aug 2023 at 11:32 | Reason: Not specified

User

Posted 02 Aug 2023 at 01:20

Originally Posted by: Online Community Member

Hi Elaine

I had gold seed markers followed by planing CT scan 10 days later and starting RT 4 weeks after that. RT was 20 fractions over 4 weeks.

Hope that's a help

Peternigel

Thank you Peternigel, hope you are doing well.

Just trying to plan the rest of our year the best I can, so that is helpful.

I can see I’m going to have to spend more time researching RT as I’m not really sure what the gold seeds are. I’ve spent most of my time on prostatectomy and HT so feel I’m going into this a bit blind.

Wishing you all the best

User

Posted 02 Aug 2023 at 05:45

The exotic gold seeds are inserted to establish a definite location for the RT to be aimed at. They're injected by inserting a slightly scary tool into the anus, followed by three quick insertions into slightly different spots in the prostate. In practice it's quite painless.

They're usually accompanied by some dot sized tatts, one on each hip and one central one over the prostate. these are also locating points, so that each time the long-suffering patient is place on the bed for RT, the nurses can easily get them into exactly the same position each time, using a laser beam to align the tatts. The "bed" used for RT is [at least this was my experience] set up with a whole lot of hydraulic controls so they can manouvre people into just the right spot.

Jules

User

Posted 02 Aug 2023 at 09:04

I think it depends on the machine used. I just completed RT and there were no gold seeds or tattoos. They did the positioning using digital imagery.

User

Posted 02 Aug 2023 at 09:34

Just another variation. I had my planning scan a week before RT started. I had the three tattoo markers and no gold seeds.

User

Posted 02 Aug 2023 at 11:38

Thanks guys for all your reply’s, really helpful. It would seem again every situation is different and I think it’s going to be a wait and see what will be happening for Rob. Hope you’re all doing really well x

User

Posted 02 Aug 2023 at 13:01

Hi Elaine, my husband had his RT a few months ago and apart from the first session when we had to stop quickly for him to spend a penny which was unusual for him, the res of his 6 sessions were quite uneventful. Post RT he did have some issues with stomach cramping . He was told about these side affects. However it did not stop him form his tennis and badminton.

User

Posted 02 Aug 2023 at 16:32

Originally Posted by: Online Community Member

Thanks for the information and advice Maud, really hope Mike is still really well and keeping doing his tennis and badminton x

User

Posted 08 Aug 2023 at 23:38

So Rob started a 4 week course of bicalutamide on the 01/08/23, today 08/08/23 he had his first 6 monthly decapeptyl injection.

I never thought really as he was ok with HT before, but does anyone know if it’s not recommended to exercise on injection day? We were in the gym this morning doing weight, he had injection at 1:30pm and then we’ve done a 5k walk this evening. He’s had some aching in his bum (injection site) and leg (his last prostap ht was injected into stomach). Just wondered if this is normal and how long it might last.

Thanks

Elaine x

User

Posted 09 Aug 2023 at 07:05

Yes totally normal. It’s intra-muscular high in the buttock and can cause 24 hr deepish pain. Sometimes spread to leg if they Nick a nerve in the area 👍

User

Posted 09 Aug 2023 at 08:00

Originally Posted by: Online Community Member

Yes totally normal. It’s intra-muscular high in the buttock and can cause 24 hr deepish pain. Sometimes spread to leg if they Nick a nerve in the area 👍

Thanks Chris.

I was thinking it might have been with us doing too much exercise on the day of the jab. Fingers crossed it’s better later today 👍

User

Posted 09 Aug 2023 at 08:28

Hi Mike had slight pain after his especially as he played tennis straight after. Didn’t last long though.

User

Posted 09 Aug 2023 at 08:32

Thanks Maud. He still felt it a bit this morning. He had some paracetamol for bed. Hopefully will be fine later.

User

Posted 22 Aug 2023 at 11:21

Just some positive news. Hubby had his results last week for his latest PSA result and so releived that it was within the normal range. At 81 years of age and with his diagnosis last year for advanced prostate cancer he is doing well. So far he remains extremely active and enjoying life. Mike is being so positive and whilst he realises he is a lot older thant many on the forum, he will keep doing everything possible to remain in good health. So sending lots of positive vibes to all on the forum.

User

Posted 22 Aug 2023 at 18:20

Good news Maud and long may it continue x

User

Posted 22 Aug 2023 at 19:24

Originally Posted by: Online Community Member

Brilliant news Maud, so pleased for you and Mike. He definitely just needs to keep doing what he’s doing as it’s obviously working 👍

Wishing you lots more many happy and healthy years x

User

Posted 23 Aug 2023 at 15:35

Hi Elaine and everyone,

Just wanted some advise.

I have had two different opinions from two urologists.

one says have surgery the other says not as you will end up having RT anyway.

may stats are t3g N0M0 although having to PSMA to confirm this.

gleason was 5+4 with some seminal vesicles involvement. No Lymph node involvement up to now.

any advise or experiences would be great fully received

thanks

Mark

User

Posted 23 Aug 2023 at 16:16

This must be so confusing for you having two urologists giving you different advice. I had a similar situation with my husband however not to do with surgery. I actually spoke to a specialist Prostate cancer nurse at the hospital and as she knew both consultants her advice was very helpful. Of course the choice was made by my husband and it was the right one. I am sorry this hadn’t helped you at all. Hopefully the forum will provide useful information and advice.

User

Posted 23 Aug 2023 at 16:20

Hi Mark1,

Could you start a new thread? People on this site don't officially "own" a thread, but they do seem to evolve and tell one person's story.

If you start your own thread, all the details about you will end up in one place.

Starting a new thread is harder on this site than it should be. You need to choose a topic even though no one pays attention to it, and it must have a unique title. You then have to wait a few hours before it is approved.

Dave

User

Posted 23 Aug 2023 at 16:22

Hi Mark,

I think this is definitely a personal choice and how you feel about the many different possible outcomes.

Rob always wanted surgery, even when he thought it was in his bone. Many argued why would you want double side effects of RARP and then RT (if and when) it was needed, but he was ok to take that risk. Of course we were hoping for a miracle that RT wouldn’t be needed and all the cancer would be gone (obviously not the case). We were also fortunate that Rob really dealt with the op well and continence was pretty great. He does suffer ED but we completely prepared ourselves for that and I find the ED easier to live with than the way HT changes him.

I suppose now he needs the RT and on HT for 2 years we may have regrets but I can honestly say we don’t have a single one. He’s had a really great 18 months imagining he was cured too….so a bonus! I also think we’re better prepared to deal with the RT and HT so I feel more positive about the treatment. (I never assumed he was cured).

This is purely just our feeling and experience and I know some men really struggle after RARP and would certainly not agree with the path we took.

I would prepare for all the side effects of both scenarios and try to see which you could manage better.

Hope this helps and good luck

Elaine

User

Posted 08 Sep 2023 at 23:37

Have a question about SRT and wonder if anyone can help.

Rob will be having what I assume is EBRT to prostate bed and pelvic nodes. He has a planning scan in October where he will have the tattoos.

I can’t quite understand if they are targeting the whole pelvic area….why tattoos? I know they would have to be careful of collateral damage but I assume they don’t target every lymph node so how do they get it all….won’t some be missed?

Any advice on this would be greatly appreciated.

Thanks
Elaine

User

Posted 09 Sep 2023 at 00:16

Elaine , I don't really know and I can't find a simple explanation. Perhaps a bit like whole body scans, they don't always actually do the whole body.

They struggled to carry out my recent SABR treatment because the bowel kept getting in the way. My understanding is that they still have to miss certain structures. They still need to know your are in the right starting position. My last SABR treatment used the skin pattern instead of tattoos for alignment.

I phoned my radiotherapy department a couple of times and they were more that happy to answer and explain technical issues regarding treatment.

Hope all goes well for you both.

Thanks Chris

User

Posted 09 Sep 2023 at 00:21

Thanks Chris.

I’ll ask the question at the planning scan.

I’m guessing because we’re getting close my mind is going a bit into over drive again and I’m worrying if the micro mets are in nodes they might miss something. I have an ever growing list of questions for that day now 😂

Hope you’re ok x

User

Posted 09 Sep 2023 at 01:17

I guess there are areas they want less radiation in, such as bowels and bladder, and other areas they know will want a high dose such as prostate bed, plus everywhere else which wants a moderate dose. So the planning scan will produce a 3d map, yes it will be a bigger map, bit it still needs to be accurate and the tattoos mark where the centre of the map is, which may not actually be the prostate bed.

An analogy would be the London Ulez map, compared to the old smaller congestion charge zone. If you said the new map is 40 miles wide so it doesn't matter if we misdraw the borders by a couple of hundred yards, I think you would find some very upset people on those borders.

Dave

User

Posted 09 Sep 2023 at 09:59

Hi Elaine, when I had SRT the three dot tattoos were used to get me into position.

After that they did a 3D cone scan and adjusted the treatment bed position to take movement of bladder and bowel into consideration. My oncologist was very concerned about collateral damage and had his top radiologist checking and adjusting my position every day. Hope this helps when asking questions.

Ido4

User

Posted 22 Oct 2023 at 22:26

So Rob had his planning scan and all went ok. He starts his SRT tomorrow 🤞🏼 any last minute thoughts or advice welcome. We’re just trying to take it in our stride as best we can and hoping to get a good balance of exercise and rest in a hope he doesn’t become too fatigued.

His last PSA was 0.044 and testosterone 0.6. Do these figures look ok going into RT? These were done 9 weeks after starting HT.

So here we go again….let’s do this 💪🏼🙏🏼xx

User

Posted 22 Oct 2023 at 22:49

Elaine, I think techniques have changed since my treatment in 2017, make sure he gets his bladder full right. Being hydrated does make a difference to how water passes through the body. I drank on the way to hospital, checked with reception that there were no delays. I then emptied the bladder and drank the required amount of water.

Hope all goes well.

Thanks Chris

User

Posted 23 Oct 2023 at 08:23

Thinking of you both and hope all
Goes smoothly. You’ve got this! Xx

User

Posted 23 Oct 2023 at 08:40

Hi Elaine,

Good luck for your OH and the RT today. If it’s any consolation I found RT a breeze compared with HT. he’ll get into a routine with the enemas and water consumption before each session and hopefully your times will be about the same each day, it makes a difference I think. One thing I found is that it helped if I did something to keep my mind of needing to pee for the 30mins wait. I wrote my poem about my journey and the time flew past.

If you’ve got a long journey home, take an emergency kit including a pee bottle, towel and wipes in the car. The urgency can increase during treatment and just having that safety net with you in car helps psychologically. I on,y needed to use it once in 20 sessions.

All the best

Derek

User

Posted 23 Oct 2023 at 10:46

Good luck with your treatment like decho I had 37 session's off radiotherapy and found it a breeze also found hormone therapy tolerable 👍 gaz

User

Posted 23 Oct 2023 at 11:18

Originally Posted by: Online Community Member

Hope all goes well.

Thanks Chris

Thank you Chris.

Although they said to keep hydrated they haven’t mentioned about his bladder having to be at a certain capacity? I just find it strange as so many mention this. I assumed they would have asked him to drink or pee at the planning scan but they didn’t 🤷🏻‍♀️

User

Posted 23 Oct 2023 at 11:19

Originally Posted by: Online Community Member

Thinking of you both and hope all
Goes smoothly. You’ve got this! Xx

Thanks Jayney xx

User

Posted 23 Oct 2023 at 11:25

Originally Posted by: Online Community Member

Hi Elaine,

All the best

Derek

Thanks Derek.

Really hope Rob finds it as easy then 🤞🏼

As I just mentioned to Chris, really strange that they have mentioned water consumption as it never came up at planning scan.

We have a late session today at 5pm but the rest are mornings which is better. Luckily we’re only about 15 mins away from the Christie that we are going to aswell so very fortunate not to have to travel far.

Im sure we’ll feel better after today and we can start to get a routine from tomorrow 👍

Take care

User

Posted 23 Oct 2023 at 11:27

Originally Posted by: Online Community Member

Good luck with your treatment like decho I had 37 session's off radiotherapy and found it a breeze also found hormone therapy tolerable 👍 gaz

Thanks Gaz. Really hope Rob is the same. He’s been ok on the hormones so far but I’m just waiting for it to all hit at once I think 🤦🏻‍♀️ he seems to be getting a few little flushes for now but I imagine they could get a lot worse.

Rob has 20 sessions so not too bad. I’m sure it will go quickly 🤞🏼🤞🏼

User

Posted 23 Oct 2023 at 12:51

In the end I only got 20 session of RT as the Onco wasn’t happy about collateral damage to the bowel after the CT planning scan….my plumbing was in the wrong place! He thought it was higher risk than that of spread elsewhere so I will just have to wait and see.🤞

Elaine, morning is good as is 15 mins drive. If the staff are anything like as wonderful as the ones in the Western in Edinburgh, Rob will be put at ease.

Surprised he didn’t need to drink water for his plannng scan? Maybe they’re using a different type of machine?

Derek

User

Posted 23 Oct 2023 at 12:55

He will be fine hopefully I was waiting for side effects from decapeptyl but they were very slight the radiotherapy was no problem even the 37 session's required went with ease gaz 👍

User

Posted 23 Oct 2023 at 14:47

When I had RT at Christie they did not ask for a specific bladder level. In fact they wanted you to empty your bladder just before RT. It depends on the hospital and where they are zapping.

Dave

User

Posted 23 Oct 2023 at 17:38

Originally Posted by: Online Community Member

Hope all goes well.

Thanks Chris

Thank you Chris.

I was told to drink 3 plastic cups of water after emptying my bladder and wait 20 minutes. With modern machinery and techniques they perhaps rely on the scans.

Thanks Chris.

User

Posted 23 Oct 2023 at 22:18

Thank you everyone.

I think maybe Christie do it a certain way as it was the same as yours Dave….he didn’t need a full bladder, he had enema when he arrived and went to the loo 5 mins before the RT started. All went fine. Looks like the times are going to be a bit all over….tomorrows has already been changed from 9am to the afternoon 🙄 luckily we can be flexible but would definitely prefer mornings.

Thanks again

Elaine

User

Posted 23 Oct 2023 at 22:56

Yes, I was given my first weeks appointments by letter, and when I arrived on day one, the RT receptionist said throw that away and told me what time my next three appointments were. I think I then asked if I could have afternoons only and that wish was granted.

Dave

User

Posted 03 Jan 2024 at 22:54

Well it’s been a little while since I last posted. Feel like I’ve been struggling a bit more with everything recently, so I’ve just shut off from it. I think we always knew we would struggle more with RT & HT hence why Rob opted for surgery originally even though it had already spread to lymph nodes. Still no regrets on the surgery, we would make the same decision again.

Anyway Rob completed his RT on the 17th November. He did fine throughout and didn’t get too many side effects. He was aching quite alot around his hips and lower back, he was more tired at times and struggled walking distances as he was getting breathless. Being on HT aswell we assumed these were side effects from one or both treatments.

The weekend before Christmas Rob developed a cough suddenly, he’d been out for a long day with friends so thought he may have done a bit too much or just picked it up in the crowds. His breathlessness became worse and it was even affecting him while lying still. I booked an appointment to see the nurse at GP surgery, she was really thorough did lots of bloods and arranged a chest X-ray that day. One of the blood tests was D-dimer (which I hadn’t heard of) the nurse did say if this one came back high then we could get a phone call even in the middle of the night to say to go to A&E straight away. Two days later we got the call from the GP surgery asking if he had been to A&E (apparently the day before they had been trying to get hold of us and left messages on an old landline 🤦🏻‍♀️). So we were told to go straight away. Seven hours later after more bloods, ECG and CTPA scan we were told that Rob had a pulmonary embolism (blood clots in both lungs). They have assumed it’s treatment related and has travelled from his legs. The doctor said he thought the main danger had passed while the clots were travelling and some don’t make it this far 😢. He is now on medication, got to have some more samples and had to go for an ultrasound scan of his abdomen, something possibly around his liver. Fingers crossed it will be ok.

Has anyone else had any of these issues after Radiotherapy? Also worried about him staying on Hormone therapy 🤦🏻‍♀️ worried the treatment might kill him before the cancer ever would 😢😢

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My husbands recent diagnosis of advanced prostate cancer

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