Prostate cancer advice

[Leighrj]

Hi guys my partner has been diagnosed with prostate cancer, it's at the earlier stages but he has three options, surgery, radiotherapy or wait and watch. To us wait and watch isn't an option as why would we want to wait for something to grow. Surgery was our initial option as it says radiotherapy doesn't completely get rid of it only slows it down and shrinks it and we just want this cancer gone and out of our lives, however we are hearing horror stories about the surgery and was wondering if anybody had had the surgery and could tell us everything was ok afterwards? We’re aware it can make you incontinent for a while but was wondering did people get back to normal afterwards and how long did it take? Also does surgery make it spread to other places? Also been told they can pierce your bowel? Just over all really scared and heartbroken, please if anybody could give some advice, Thanks for listening

I'm sorry to hear this. There's a specific prostate cancer forum over on the Macmillan website where there will be plenty of others who have been or are going through a similar experience
Prostate cancer forum | Macmillan Online Community

I'm sorry to hear this.

My DF was diagnosed 12yrs ago. He was given 4yrs, surgery wasn't an option but he chose to go with radiotherapy. Six days a week for seven weeks.

He'll be 80 this year. Still having treatment via hormone injections and chemo tablets and is in rude health. Walks about 25 miles a week, fitter than he's ever been.

He's recently been prescribed new blood pressure meds which is conflicting with his cancer meds so his PSA levels have raised slightly, but that's all being dealt with. It's not the death sentence it was once. There's new treatment all the time.

How old is he, in older men it tends to be slower growing and many more die with it unknowingly. Db was diagnosed at 50 as part of general screening, did watch and wait for a few years then had it removed by keyhole. Df and his brother were diagnosed in early 70s, one had radio , one surgery, both still with us in mid 80s.

There is a form of radio where it is implanted but that restricts further treatment options.

He is 52, but a young 52 if that makes sense really sporty and eats well etc looks young for his age, did the keyhole go well and has it fully worked? This is the route we wanted to go down but so many nhs doctors have scared us saying just wait and watch because we could pierce your bowel and cause further problems if we operate but we’re just so worried that we want it gone and really wanted the surgery, also I hope you don’t mind me asking but did he get control of his bladder back etc? Thanks for taking the time to reply everybody I appreciate it more than you can imagine.

Also why does the radiotherapy restrict other treatment options? Sorry for all the questions.

Yes he is fine. Had three months ish off work to recover though

I’m so happy for you that he is fine that is amazing news, is he able to wee normally again now? Sorry for such personal questions

I’m not sure just recall that was a potential downside , it is for the brachytherapy.

As far as I am aware!

My dad had surgery for prostate cancer at the age of 73, and has been absolutely fine since (3 years) no further treatment and just monitoring of PSA levels which remain low. He took it easy for a while and used the toilet more frequently but was completely back to normal in a few weeks.

Thankyou so much for replying, I’m so glad your dad is fine now, I think my partner is just worried about it spreading as a lot of people have said when you have surgery it can spread and also about the piercing of the bowel etc, I think he’s also worrying about never being able to control his bladder again

A friend of ours has stage 1 prostate cancer. He is on watch and wait.
As I understand it prostate surgery can cause incontinence and erectile dysfunction.
Our friend is in his 70’s and very happy to be monitored.
According to Professor Hashim Ahmed low risk prostate cancer can be safely monitored.

https://www.thetimes.com/life-style/health-fitness/article/prostate-cancer-guide-questions-answered-b3pr9ztmx#:~:text=High%2Drisk%20prostate%20cancer%20is,don't%20treat%20aggressively.%E2%80%9D

My Dad had HIFU treatment (20 years ago - it was a very novel treatment back then and is still considered quite specialist). It is much less likely to cause erectile or urinary problems but is only suitable for certain types, for example if it hasn't spread.

I would certainly look into it for a younger patient given the quality of life benefits. Also, watch and wait is considered preferential for older patients as more men die with prostate cancer rather than from it, however - given your DH's age - treatment might be preferable if only to reduce the worry.

Wishing you both well.

I’ve had two friends whose husbands have had prostate cancer as young (ish) men. Both lost weight as the treatment they were prescribed worked better on thinner abdomens, something to do with maximum needle length. They also took up Pilates in order to strengthen their pelvic floors to reduce the risk of incontinence.

My DF had prostate cancer about 15 years ago aged around 59. He opted for surgery. So far he has had no recurrence or spread, that we know of, whatsoever. He hasn't mentioned any complications of surgery but I think he may have some mild bladder incontinence as a result. Wishing a good outcome for your partner whatever he decides.

Join the prostate cancer facebook groups.

Do your own cancer research.

Latest information suggests the outcome is no different between watch and wait/surgery/radiotherapy.

Don’t rush you have time to work through this.

Don’t be swayed by fear-mongering consultants.
Seek a second opinion.

The Birmingham Prostrate clinic is recognised as a centre of excellence.

There is a risk surgery can spread the cancer.

There is an awful lot you can do with diet and off label medications.

Did your DP have a guided biopsy post MRI?
Does he have a decipher score?
What is his PSA and Gleeson score?

Our dear friend had his prostrate removed last summer. He has had so many issues after .... sepsis, dvts. He says he would not have the op if he had his time again.

Still has pee problems, including now has 'split stream'.
He's also put a lot of weight on, despite hammering the exercise abd being really careful with food intake.
He has been terribly unlucky and is such a lovely man.

I'd currently undergoing radiotherapy and I believe a downside is that once you have a course of treatment once you can't have it again in the same area at a later date ....

Hi op, have they given your DH a Gleeson Score (ranges from 6-10). I believe they normally suggest surgery for those with a score of 8-10 (which is high).

My DH had a score of 8, and they said that the only real option was surgery, as it would likely come back with anything else. He had a Robotic Assisted Radical prostatectomy last December. So far all good, no incontinence issues.

After surgery they examined the tumour and regraded his Gleeson score to a 9. It was highly aggressive.

My husband was diagnosed approx 5 years ago, in his early 60’s. He elected to have the prostate removed via robotic surgery. After an overnight stay in hospital came home with a catheter for a couple of weeks. He did struggle with continence for a few months but he worked hard on pelvic floor exercises and is now ok in that area. One of the potential side effects of the operation is nerve damage and this happened to him, meaning he can no longer achieve an erection by any means other than potentially an injection which we chose not to persue. The good news is that his psa levels have been undetectable since the operation , which is the most important outcome . I appreciate how difficult it is to take in all of the information at the time and I hope the outcome is positive whichever option he ultimately chooses.

My DH had this a couple of years ago, early 60s. He had surgery. However he did a lot of research into it and chose to have the operation privately so that he could choose his surgeon as someone with a lot of recommendations as he was quite worried about the possible side effects. I realise that option isn’t possible for everyone. All went well and although he had some difficulties initially, this subsided after a couple of months.

There was a less Invasive type of treatment which DH was initially hoping for but he was advised that there was more likelihood of the cancer returning at a later date and he would still need the surgery but would then be older and less able to cope with the surgery so he went straight for that option. And as another poster said, he was given pelvic floor exercises to do.

Hi guys thankyou for all of your advice and sharing your stories. We have decided to go private and have the prostate removed and was quite happy with our decision however today we have come across some information online stating that if you have your prostate removed you live for only around 10/15 years after! Is this true does anybody know? And if so why is that? My partner is only young and this turned all our stomachs when we heard it, thanks again.

Hi, thankyou for all of your advice and sharing your story. We have decided to go private and have the prostate removed and was quite happy with our decision however today we have come across some information online stating that if you have your prostate removed you live for only around 10/15 years after! Is this true do you know? And if so why is that? My partner is only young and this turned all our stomachs when we heard it, thanks again.

That certainly wasn’t anything my DH was told and having just had a little look myself there is nothing to suggest that actually having surgery would shorten someone’s life expectancy (aside from the obvious risks that surgery always carries). I wonder if what you are seeing is simply an average of years lived following prostate removal and that the number of years is based on the fact that it is normally older men having the operation.

I would suggest that your DH discusses any worries with his prospective surgeon. There’s a lot of info available on the internet but sometimes we can scare ourselves from misinterpreting things or reading of unlikely side effects etc