Just Diagnosed - confused by treatment options

Start by downloading the toolkit from this page, lots of information.  My husband is 6wks post op today. He was diagnosed with a Gleason 8 with PNI, stage T2b.

However , he just received his histology and first PSA results.  He was upstaged to T3a, PSA 0.2 and is being referred to Oncologist for further treatment.

The tool kit lists the main side effects of each treatment and helps you to prioritise what is important to you.

Hi Raphael, the choices are bewildering. If you let us know your PSA and your TNM stage (BTW from what you've posted already I would guess it is T2N0M0, but I may be wrong so please post if you know any other details) it can help members judge how similar your diagnosis is to theirs.

The fact you have been offered a choice of all treatments suggests that the medics think they will all offer you a reasonable chance of survival. So as Lyn says it will probably be a consideration of side effects which will influence your decision most. 

My own treatment was HDR Brachy, EBRT and HT. (you'll hopefully pick up the meaning of all these from your other reading).

Once you have read up on a treatment you think maybe appropriate post on here saying "my full diagnosis is xyz, and I'm thinking of having treatment abc?"

Once you have made the question more precise more members will reply with their own experiences. Based on what you hear you can then post saying "OK, I'm thinking of treatment ijk instead" and then you'll get a whole load more opinions. No one on here will object to you asking as many question as you want, and no one on here will mind if you keep changing your mind.

By the time you have to make a formal choice with the medics you will have rehearsed all the arguments here, and be far better informed. 

Wow that is quite a detailed diagnosis. BTW the T2 mentioned above is nothing to do with the staging, it's about how Mri signals are transmitted. But I'm still fairly confident that from all the rest of your diagnosis.

Your PSA is 4.18

Your gleason 3+4

T2N0M0

In particular the capsule being intact, Seminal vesicles clear, and the reasonably low psa make this sound like a very treatable cancer. It is unlikely to have spread.

Surgery would almost certainly remove this cancer completely, but find out if it would be nerve sparing, if not you won't have a good sex life, if it is, you may have a good sex life but nothing is guaranteed. You may have incontinence.

HIFU may be possible, but may not be available on the NHS. It is not a very invasive treatment but isn't very successful and may need repeat treatments. A few members on here have experience of this and will help you if you are interested in this treatment.

Brachytherapy either LDR or HDR may be possible. Not as invasive as surgery and probably just as successful. 

EBRT even less invasive, but will result in radiation dose to bowel etc. Which is not very desirable. 

ADT, also known as HT may be offered at the same time as the other treatments. it can make them more effective.

Fortunately Chemotherapy is irrelevant your cancer is not advanced. 

I can't think of any other treatments but there may be some. 

Just pick whichever seems best for you post it on here and see what other people have to say. Then choose another one if it doesn't sound right for you. When you see the specialists you will be so much better informed. 

Edited by member 07 Sep 2020 at 23:02  | Reason: Not specified

Thank you again so much

May I ask all a rather innocent question. With my diagnosis,would it be right to say (albeit superficially) that with a diagnosis like mine the more invasive the treatment (notably RP surgery) the more likely I might be to get "clear", but the more likely there is to be meaningful, potentially irreversible long term side effects. Whereas by contrast the less invasive the treatment (most things other than surgery) the less likely the chances of "the all clear" but the less likely to have meaningful, potentially irreversible long term side effects?

My fifteen-year prognosis doesn’t look great, with more chance of recurrence than not, but by which time I could be dead of something else!

At least I am not looking at bowel and bladder problems a few years down the line as a side effect of radiotherapy.

Talk to your surgeon, talk to your oncologist, get second opinions if you want. The MDT will discuss your case, and their advice will be useful, but not definitive.

🤞

Cheers, John.

Good luck with whatever choice you make.

I went the surgery route and have no regrets at all. ( check my profile)

I'm about 6 months on, undetectable PSA and everything more or less back to normal. I was fit before the surgery and returned to exercise as soon as sensible afterwards which I'm sure helped. 

Agree with above points preparing for surgery.

My surgeon (who was a very fit person) gave me a routine which included aerobic fitness, core strengthening and pelvic floor exercises. He stressed I was not competing in the olympics so do it in moderation. He joked he didn’t want me having a heart attack before surgery.

I had a passion for Maryland biscuits - he suggested for the 8 weeks leading to surgery reduce or eliminate alcohol and reduce sugar to reduce weight. I think this significantly improved my recovery and help me mentally to prepare for surgery.