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surgery or radiotherapy

User
Posted 27 November 2017 15:04:34(UTC)

HI been diagnosed recently, have already started on hormone treatment.  Having to see my consultant this week and have to decide on whether I want radiotherapy treatment, 37 treatments were recommended as well as hormone or robotic surgery.

 

A the moment I tend to feel I am favouring the surgery but don't know enough about the after affects and would appreciate to hear from anyone who has gone through this recently and how they feel now.

 

gerrytony

User
Posted 30 November 2017 19:46:28(UTC)
It will be interesting to read what your surgeon said and if you made up your mind. My immediate thought is that Gleason 9 is a level that would normally warrant fast action. My own choice would be to remove it asap even if RT could be needed after. However there could be other factors.

My advice to anyone would be to know the main options and decide what you want before you meet the consultant. Let him guide you out of your decision if necessary but don't delay choices beyond that appointment, unless they're very happy to offer Active Surveillance.
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User
Posted 27 November 2017 17:00:42(UTC)

Hi, it would be helpful if you could post your diagnosis details - the Gleason score, staging (usually written as a T with a number and a letter like T1a, T2a, T2c, etc), your PSA at diagnosis and anything else you know about it. It is very unusual for a man to be put on hormones while making a decision about treatment and still have surgery as an option.

Also, have you seen an oncologist to talk about the different types of radiotherapy and maybe brachytherapy? Or have you only seen a urologist so far?

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


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User
Posted 27 November 2017 22:22:08(UTC)

You might well find it helpful to obtain or download the 'Toolkit' from the publications dept of this charity.

Barry
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User
Posted 27 November 2017 17:00:42(UTC)

Hi, it would be helpful if you could post your diagnosis details - the Gleason score, staging (usually written as a T with a number and a letter like T1a, T2a, T2c, etc), your PSA at diagnosis and anything else you know about it. It is very unusual for a man to be put on hormones while making a decision about treatment and still have surgery as an option.

Also, have you seen an oncologist to talk about the different types of radiotherapy and maybe brachytherapy? Or have you only seen a urologist so far?

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


Thanked 1 time
User
Posted 27 November 2017 22:22:08(UTC)

You might well find it helpful to obtain or download the 'Toolkit' from the publications dept of this charity.

Barry
Thanked 1 time
User
Posted 28 November 2017 05:52:35(UTC)

Watching what my partner is going through now after receiving radiotherapy in 2001, if I were in your place and it it's on offer I would go for surgery.

My partner is now 80 and after being told he'd probably be dead by the time the prostate cancer does its thing, he went for radiotherapy. 

I'm told once radiotherapy is done the prostate is very difficult to remove so you may not be able to change your mind and have surgery later.

Now my partner has a t4 tumour and it has pushed into both of his uretas which nearly killed him in March. His GFR was 3 and his creatinine at 1000  after I phoned 999. Nobody told us to watch out for this and the signs were there. We just thought it was a stomach bug and now he has kidney damage. This is all after the doc wrote a letter months before saying he needed a nephrostomy (catheter to your kidney) but they didn't have the funding. He was told at the hospital that you can live quite comfortably with 1 kidney....but the inevitable happened and it pushed into his second ureta and it has now lessened his life expectancy despite getting a nephrostomy at the last minute just in time to save his life. 2 weeks after coming out of hospital and losing 13llbs in 8 days, he ended up with ecoli but luckily another 999 call and antibiotics saved him. Not long after he started bleeding from his penis and his bladder now has a spread of cancer in it. He now has another catheter to his bladder called a surpapubic. 80 years old and he has 2 bags to deal with! 1 pure urine and the other urine and blood. He has been bleeding for months andwe told the Mcmillan nurse that he wasn't feeling well. She said ok, I'll arrange a blood test to find out if you're anaemic. A month later and we were still waiting for this blood test. She had forgotten and had we not chased her up he would have carried on getting worse. He's now on iron tablets as he was indeed aneamic from losing a tablespoon of blood every day.

In hindsight and after learning so much about this since March, we have been surrounded by an immense amount of neglect and bad decisions resulting in panic situations and amazing people at the hospital having to save his life when it was so so close to being too late.

He is going through hell and he has much much worse to come. If you can, and if it's safe, please avoid all this by having surgery. The downsides of surgery are nothing compared to this. Many people seem to be out the next day.

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User
Posted 28 November 2017 08:40:53(UTC)

I am sorry that things are so difficult for you, Nevergivein. The other side is that your partner had successful treatment 16 years ago and has been problem-free until this year. My dad has had 14 years of thinking he was cancer free before it came back and I will be be very happy if my husband is still around 16 years after diagnosis.

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


User
Posted 28 November 2017 09:45:40(UTC)

You need to look at the downsides of all the treatments, and decide which will be easiest to live with for you. The toolkit is a great place to start.

"never give up" - I'm sorry to hear about your husband's situation, but recurrence, alas, can happen whichever treatment route you choose: there's no way to know if your husband would have done better with surgery - or had problems 10 years earlier. The important thing, whatever treatment you have, is to remain vigilant of any signs of recurrence, and deal with it as promptly as you can.

But cancer is cancer; it does what it does. 16 years on from your husband's diagnosis, the prognosis has improved a little, and signs are that it will continue to improve - both for radiotherapy and for surgery. But Prostate cancer is one where the word 'cure' still applies to few. Remission is much more realistic. But remission is what it says: "a temporary diminution of the severity of disease or pain.".

If I get 16 years out of my radiotherapy, I'll be profoundly grateful. Many don't get that much, alas.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 28 November 2017 12:37:09(UTC)

Just to look at the other sign of the coin, there are situations where men have had a bad experience with surgery and wish instead they had instead had RT. A man's feelings are in hindsight influenced by his own individual experience. When considering the way to go, it makes more sense to look at the bigger picture of what overall are the risks, pros and cons of various treatments and side effects with particular reference to your own individual circumstances and personal feelings on the subject.

Barry
User
Posted 29 November 2017 12:16:22(UTC)

I am sorry things are not going well for your partner and thank you for sharing.  I am more thinking of surgery at moment  but good to hear other peoples experiences.   Best for the future sounds as though you are both going through a terrible time

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User
Posted 29 November 2017 12:24:10(UTC)

my psa at diagnosis was 7.1 and Gleason score of 9. I saw surgeon who in september 2017 wanted another mri to see if spread since last mri in june..Since then it looks as though localised and have since seen urologist.  He was suggesting 37 radiotherapy treatment along with hormone treatments   I couldn't make up my mind as I didn't know much about surgery and although I favoured it he said I would need to speak to surgeon but meanwhile started me on hormone tablets.  I am going later today to see surgeon.

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User
Posted 29 November 2017 19:43:41(UTC)

Suggest apart from other things that when you speak with the surgeon you ask how likely he feels you will also need RT after surgery. You can then also factor this into your deliberations in considering your treatment.

Barry
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User
Posted 30 November 2017 19:46:28(UTC)
It will be interesting to read what your surgeon said and if you made up your mind. My immediate thought is that Gleason 9 is a level that would normally warrant fast action. My own choice would be to remove it asap even if RT could be needed after. However there could be other factors.

My advice to anyone would be to know the main options and decide what you want before you meet the consultant. Let him guide you out of your decision if necessary but don't delay choices beyond that appointment, unless they're very happy to offer Active Surveillance.
Thanked 2 times
User
Posted 01 December 2017 07:55:30(UTC)

He has done well, but it's obvious he would have done better getting it out. If he had, it wouldn't be bleeding every day from there and it wouldn't have grown so big that it blocked his uretas.

 

No brainer. Get it out.

 
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