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How Likely are the side effects of treatment?

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User
Posted 20 Nov 2020 at 20:46

Having recently been diagnosed with localised Prostrate Cancer I am interested in finding out about the impact and side effects of the treatment offered:  Surgery (Radical Prostatectomy) OR Radiotherapy (External Beam) with Hormone Therapy (18 months - effectively 2+ years allowing time for testosterone to kick back in).

I've done a lot of reading about these treatments but much of the info, understandably, describes the full range of side effects that may occur.  While I appreciate we are all different and the various side effects will impact upon each of us differently, I am trying to understand the likelihood of the different side effects in any treatment regime in order to reach a decision on which will be best, or rather least worse!

With surgery it would seem that ED and urinary problems are most likely.  This is not great as wearing pads and tight fitting underpants or even a convene don't really fit with our naturist lifestyle!  I have yet to speak to the Surgeon (telephone consultation scheduled for 26 November 2020) to ask about chance of saving nerve bundles. 

The main issues from radiotherapy seem to be bowel problems and radiation cystitis for up to 12 weeks, along with ED & loss of libido, hot flushes and sweating, mood swings & poor mental health, weight gain and a whole host of other side effects from the hormone therapy, for two years.  Not great either!  But what is the likelihood of these occurring and for how long?

From reading some of your posts (thanks guys, and your partners, for sharing your experiences) staying fit with a daily walk for exercise, doing your pelvic floor muscle exercises and your penile rehab exercises, and staying positive are all essential.  I agree!  Walking daily but still trying to master the pelvic floor exercises at the moment and will ask for my penile rehab kit/tablets once I've decided on the treatment pathway!

Histology: Gleeson 7 (4+3). Stage T3.  PSA 25.  Together these have put me in the High Risk group.  Cancer found in 7/7 biopsy cores (1@70%,  1@20%, 3@10%, 1@5% 1@<1%).  Although described as localised it has crept into the seminal vesicles but otherwise no spread and Bone Scan was clear.  Surgeon advised 50% chance of requiring additional treatment after surgery.

Would love to hear from anyone who can shed light on the 'probability' and issues I've highlighted.

UPDATE: Thanks for everyone's contributions, which were really helpful.  Decided (on 28 Nov 2020) to go for the Hormone & Radiotherapy treatment as the side effects are possible or likely and of a temporary nature (except ED which is pretty much a dead cert and permanent, whichever treatment you have!).  Surgery is pretty much a dead cert for ED, leakage (as a result of re-plumbing) and (in my case) needing additional treatment after surgery.

Edited by member 01 Dec 2020 at 18:42  | Reason: Providing update on status.

User
Posted 20 Nov 2020 at 23:39
Unfortunately, John, this is one of the great unknowns. There are a whole raft of possible side effects. Some men get virtually none; most get a few; a very small number get the full set. It's impossible to tell in advance which group you'll fall into.

I went down the HT/RT route and had relatively few side effects from the HT. Weight gain and the expected loss of libido. Some breast growth which RT to the chest stopped in its tracks. Lost most of the weight again now.

RT for most men is trouble free until the last few weeks, and that's the way it was for me. Towards the end I had bladder irritation (very common) making me pee every 45m all night. After treatment I passed a lot of mucus (again very common) and had some doses of proctitis (a burning sensation in the rear end). Two years on and I'm left with increased bowel frequency (I was formerly a once every 2 or 3 days man, now it's once or twice a day), and occasional mucus, but that's about it. No complaints and it's a treatment choice I'd make again in the same circumstances. My treatment appears thus far to have been successful.

Cheers,

Chris

User
Posted 21 Nov 2020 at 09:08

John good morning 

I am 65, was diagnosed last Oct, and decided to have Radical Prostatectomy. (Robotic Surgery). 

Had surgery in July , all went well, in hospital for 48 hours, came out with catheter, for 10 days before removal. I had no symptoms before , and had no pain etc post suregery. Catheter was "inconvenient" but not painful, even removal. 

I have had minimal incontinence issues and can now go through the night and possibly use 1 light pad, every 2 or 3 days. I feel great in myself, I am a sports coach and have great movement, and no pain.

I would recommend you use just NHS and Prostate Cancer UK web sites for info. There is a lot of negative news out there, but those sites appear to be very knowledgeable and I found both best sources of info. 

Do you pelvic floor exercises, now, htey really do help. I continue mine, now and it is now just part of my life. 

Stay positive, use the PCUK nurses helpline, they are truly brilliant.  Stay strong . 

 

All the best, post again if you need to 

User
Posted 21 Nov 2020 at 03:28
I had surgery two and a half years ago by a very experienced surgeon who had done over four thousand prostatectomies.

My side-effects, apart from being cancer-free, are limited to a shortened penis and complete ED. Others who had the same surgeon do not have those problems, apparently. Continence is fine - I bought a box of about fourteen Tena Lite pads immediately after the op. and I still have about five left.

If you opt for surgery, find a high-volume surgeon and do research on their outcomes.

Best of luck.

Cheers, John.

User
Posted 21 Nov 2020 at 08:57
Considering your staging it might be prudent to ask how likely RT might be needed after surgery.

I'm thankfully 16 years down the road but nevertheless have always had ED issues, put down to RT rather than HT. On the positive other than at time of RT no bowel issues.

Ray

User
Posted 21 Nov 2020 at 09:15

Hi John, 

You list mental health as an issue associated with radiotherapy. Going by my personal experience, I would stick my neck out and add mental health to the surgery option too.

I had nerve sparing surgery November last year and recovered quickly without incontinence issues. Two months later after the post-op euphoria, I hit a real low. I'm unsure what triggered it but ED was definitely a factor. I had some counselling which helped, and ED wise, I am going through a slow recovery. 

Good luck with your decision and treatment. 

Kev.

 

User
Posted 21 Nov 2020 at 11:48
I think low mood, depression and other mental health problems can be a side effect of being diagnosed with cancer; Macmillan published a great info leaflet on this.

About 90% of men who had full or partial nerve sparing can get an erection either naturally or with mechanical / chemical aids at 12 months post op. For men who had non nerve sparing RP, that falls to something like 20%

90% of men are using 1 pad per day or less at 12 months.

Loss of length is very very common and seems to be particularly noticeable when flaccid. Loss of length and girth when erect is dependent on how successful and frequent the penile rehabilitation is post treatment, 'use it or lose it' is a real thing.

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

User
Posted 21 Nov 2020 at 13:44

I had the same high volume surgeon as Bollinge. Surgery was a massive decision as carried the highest risks in my view but also a chance of cure if caught early. No issues in terms of incontinence night or day. Couple of drips here and there if I leave things too late and lean forward at the sink for example. Only had two nights in ~12 months of a leak which was after a barrel of beer with a mate..... No issues recently I hasten to add and things settle more and more as months go by. All very predictable and easy to manage. No real ED issues as had partial nerve removal one side. If I’m tired 2.5/5mg tadalafil does the job to get things back to performance of my 20s

I didn’t really notice and length loss issues so count myself lucky in both respect.

No regrets to date. Lots of research before  hand was prudent and choice of surgeon key in my view.

Edited by member 22 Nov 2020 at 08:15  | Reason: Not specified

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User
Posted 20 Nov 2020 at 23:39
Unfortunately, John, this is one of the great unknowns. There are a whole raft of possible side effects. Some men get virtually none; most get a few; a very small number get the full set. It's impossible to tell in advance which group you'll fall into.

I went down the HT/RT route and had relatively few side effects from the HT. Weight gain and the expected loss of libido. Some breast growth which RT to the chest stopped in its tracks. Lost most of the weight again now.

RT for most men is trouble free until the last few weeks, and that's the way it was for me. Towards the end I had bladder irritation (very common) making me pee every 45m all night. After treatment I passed a lot of mucus (again very common) and had some doses of proctitis (a burning sensation in the rear end). Two years on and I'm left with increased bowel frequency (I was formerly a once every 2 or 3 days man, now it's once or twice a day), and occasional mucus, but that's about it. No complaints and it's a treatment choice I'd make again in the same circumstances. My treatment appears thus far to have been successful.

Cheers,

Chris

User
Posted 21 Nov 2020 at 03:28
I had surgery two and a half years ago by a very experienced surgeon who had done over four thousand prostatectomies.

My side-effects, apart from being cancer-free, are limited to a shortened penis and complete ED. Others who had the same surgeon do not have those problems, apparently. Continence is fine - I bought a box of about fourteen Tena Lite pads immediately after the op. and I still have about five left.

If you opt for surgery, find a high-volume surgeon and do research on their outcomes.

Best of luck.

Cheers, John.

User
Posted 21 Nov 2020 at 08:57
Considering your staging it might be prudent to ask how likely RT might be needed after surgery.

I'm thankfully 16 years down the road but nevertheless have always had ED issues, put down to RT rather than HT. On the positive other than at time of RT no bowel issues.

Ray

User
Posted 21 Nov 2020 at 09:08

John good morning 

I am 65, was diagnosed last Oct, and decided to have Radical Prostatectomy. (Robotic Surgery). 

Had surgery in July , all went well, in hospital for 48 hours, came out with catheter, for 10 days before removal. I had no symptoms before , and had no pain etc post suregery. Catheter was "inconvenient" but not painful, even removal. 

I have had minimal incontinence issues and can now go through the night and possibly use 1 light pad, every 2 or 3 days. I feel great in myself, I am a sports coach and have great movement, and no pain.

I would recommend you use just NHS and Prostate Cancer UK web sites for info. There is a lot of negative news out there, but those sites appear to be very knowledgeable and I found both best sources of info. 

Do you pelvic floor exercises, now, htey really do help. I continue mine, now and it is now just part of my life. 

Stay positive, use the PCUK nurses helpline, they are truly brilliant.  Stay strong . 

 

All the best, post again if you need to 

User
Posted 21 Nov 2020 at 09:15

Hi John, 

You list mental health as an issue associated with radiotherapy. Going by my personal experience, I would stick my neck out and add mental health to the surgery option too.

I had nerve sparing surgery November last year and recovered quickly without incontinence issues. Two months later after the post-op euphoria, I hit a real low. I'm unsure what triggered it but ED was definitely a factor. I had some counselling which helped, and ED wise, I am going through a slow recovery. 

Good luck with your decision and treatment. 

Kev.

 

User
Posted 21 Nov 2020 at 11:48
I think low mood, depression and other mental health problems can be a side effect of being diagnosed with cancer; Macmillan published a great info leaflet on this.

About 90% of men who had full or partial nerve sparing can get an erection either naturally or with mechanical / chemical aids at 12 months post op. For men who had non nerve sparing RP, that falls to something like 20%

90% of men are using 1 pad per day or less at 12 months.

Loss of length is very very common and seems to be particularly noticeable when flaccid. Loss of length and girth when erect is dependent on how successful and frequent the penile rehabilitation is post treatment, 'use it or lose it' is a real thing.

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

User
Posted 21 Nov 2020 at 13:44

I had the same high volume surgeon as Bollinge. Surgery was a massive decision as carried the highest risks in my view but also a chance of cure if caught early. No issues in terms of incontinence night or day. Couple of drips here and there if I leave things too late and lean forward at the sink for example. Only had two nights in ~12 months of a leak which was after a barrel of beer with a mate..... No issues recently I hasten to add and things settle more and more as months go by. All very predictable and easy to manage. No real ED issues as had partial nerve removal one side. If I’m tired 2.5/5mg tadalafil does the job to get things back to performance of my 20s

I didn’t really notice and length loss issues so count myself lucky in both respect.

No regrets to date. Lots of research before  hand was prudent and choice of surgeon key in my view.

Edited by member 22 Nov 2020 at 08:15  | Reason: Not specified

 
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