Deciding on treatment options

Update - Following a meeting with the surgeon today I have pretty much decided on surgery which will take place at the end of January. This decision has not been taken likely but I think it will be the best option for me. The surgeon advised that my prostate was full of cancer on both sides and close to the edge. This very, very unfortunately for me means that the erectile nerves can’t be saved as too close to cancer and a ‘skim’ may leave cancerous cells. I weighed it up as follows: Surgery pros - quick procedure, remove the whole problem, no hopeful waiting for good test results every few months (although I will have timely PSA checks), maybe up and running after 3 weeks. Cons - no sexual activity (quite a big one for me and may struggle to adapt to this), possible incontinence problems with 3% having serious problems. Radiotherapy Pros - less invasive procedure, more of a chance of sexual function Cons - 3 moths of HT followed by 20 trips to hospital (2 hour round trip) for RT, if surgery eventually required there are complications, could still get prostate cancer again. This is just my simple reasoning and I understand it’s different for everyone. I am hoping for an oncology discussion but I can’t see this changing my decision. I am sure this may be seen by some as over simplified and hope it doesn’t offend. If I’ve missed anything obvious, please let me know. 

Hello Amnesiac  Thanks for the update. It's YOUR body YOUR feelings and YOUR choice.

You take advice, weigh up the pros and cons and go with your personal feelings.

I hope it goes well for you - it's your journey and we will all be with you on it. Keep us posted with your news and if you have any questions please ask them. There are plenty of great folk on here who have been down that route.

Best wishes - Brian.

Hi A

I suppose the fact is that ED is a big issue for some but not for others and would obviously depend to some extent on your age.

Some people just want it out at any cost.

The other thing to consider is that if your gland is full up with cancer cells and also near the border then Radiotherapy could be a better option as can hopefully mop up some cancer cell stragglers.

Radiotherapy is a lot easier  and 3 months of HT only sounds ok.

What r your other stats by the way, PSA, Gleeson.

Just my opinion so Def doesn't mean it's right but see what others say.

Whatever u decide I wish I all the best

Steve

Thanks Grundo, this food for thought 

I’ve just dropped my stats into my Bio but they are:

Diagnosis: Prostate cancer

Gleason 4 + 3 = 7

All six cores on right and all six cores on left

Index PSA 8.75ng/ml

History of father with prostate cancer previously

MRI scan reported as 23cc PI-RAD 5 area to the left possible early

I have subsequently had a CT and nuclear (bone) scan which were both reported as all clear including lymph nodes. 

The surgeon also noted that the nerves on the left side looked shot - not his exact words but that was my interpretation  - I have been experiencing slightly increasing ED but would give a lot for any functionality maybe assisted by medication. I know I don’t want to go down the pump route. 

Hi Amnesiac 

I have just re-read your earlier message - I know you have made the choice for surgery however:

Amnesiac said:

3 moths of HT followed by 20 trips to hospital (2 hour round trip) for RT,

It's normal to have 3 months HT followed by RT - FOLLOWED BY another potential period of up to 2 further years HT. I think if you are thinking about changing your mind you need to clarify the HT period.

Best wishes - Brian.

So your stats are quite low , bit surprising that they are saying it has filled the capsule or nearly.

Do u know the tumour size in mm , cos that can tell u a lot.

One other thing that I didn't mention before, u have surgery and the cancer returns then u can still have RT but very difficult the other way round IE surgery after RT.

So, something else to take into consideration.

All the best 

Steve 

It is difficult isn't it. I saw the oncologist yesterday who is 'not convinced of the urology diagnosis. I have been deciding since 8 September and yesterday did little to settle my mind. I went with a list of prepared questions which I invited him to answer to, including: 'What would you do if you were in my position?' and due credit to him he answered. I am still weighing up the options. What I will say is that I have been to a brilliant free zoom meeting, independent of nhs but lead by experienced nhs staff. It was attended by several people who only had the diagnosis of prostate cancer in common. New diagnosed, recovering, recurring cancer, prostate removel, radiotherapy. Good to listen to people on the journey alongside practitioners. You get sent a free large workbook that helps you to take control and manage the side effects. Contact them, you have nothing to lose and there are no hidden costs or agenda. If ido anything it will be radiotherapy, cutting it out does not say that is that unfortunately. 

Hello Amnesiac, can I reply from a wives point of view, please? 

it’s good that you have arrived at the decision that feels best for you! I think, though, that your post shows lingering doubts?

as someone else has said, I think you should be as sure as you can (and also be as prepared as you can be) about the potential for rogue cancer cells outside of the prostate requiring radiotherapy somewhere down the line.

re hormone therapy and length of time to be taking it. My husband was T3a N0M0 Gleason 4+3. He was told he could finish HT after 1 year but preferably to continue for 18 months to be on the safe side. He has agreed. The side effects are not nice to observe but that bothers me more than him as I hate to see him struggle on the down days. He has been told though that his life expectancy now after rt and ht is no different to any man his age.

ED this seems a certainty with your own surgery and also seems a big problem for you to contemplate. Please also remember, though, that this needs discussion with your wife/ partner. If you do suffer with permanent ED please remember that us wives still have needs for cuddles, a kiss or two etc etc( will leave it to your imagination!). 

just some of my own thoughts and feel free to ignore:)

best of luck with your surgery!

That is right worriedwife, my diagnosis is almost the same as your husbands except I have 3:4. The oncologist said I could possibly live for years even if I came off everything and did nothing. He told me he was not convinced of the radiographers diagnosis! Just keep talking to everyone who has experience and not rely on one person's opinion.

Remind us if your stats ToFo