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It is not all bad news.

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User

Posted 25 Aug 2019 at 16:47

Hi everyone,

Well the consultant hit me with the news that I have PC even though I feel ‘on top of the world’. My knees didn’t buckle from under me on hearing the news but, it got my brain in gear to start addressing the problems that may effect me in the future.

At 63yrs, I was winding down to a comfortable life with my hobbies to keep me occupied.

Now this spanner in the works may or may not turn my life around.

I have Lynch Syndrome (MSH6 mutation fault) to which puts me at higher risk to getting bowel or prostrate cancers. I have an annual colonoscopy. The initial one had at 60 found 20 polyps which were removed in two sessions. In the last 3 had only two polyps found.

Joined an IMPACT study through Manchester Uni Hospital to identify men with a genetic predisposition to PC and by golly, I have been caught with it.

User

Posted 25 Aug 2019 at 21:37

Hi,

That's unfortunate although it normally grows slowly and there are plenty of treatments. It's possible to feel relief it was found and hopefully as early as possible. There's plenty of advice on here. The usual advice is to download the 'Toolkit' and fill out your profile with dates, Gleason and what the consultant said. People can then comment better.

All the best
Peter

User

Posted 26 Aug 2019 at 00:01

Although the data showed I was low risk (waiting on the results letter), their preferred method is prostrate removal.

Radical but much preferable to a life of drugs and radiotherapy.

User

Posted 26 Aug 2019 at 09:16

The only reason the consultant said the best option for me is removal is due to me having Lynch syndrome and my predisposition to getting this form of cancer as well as bowel cancer.

User

Posted 26 Aug 2019 at 14:25

A urologist has a natural urge to recommend surgery: that's what urologists do. You really need to ask for an appointment with an oncologist to discuss the RT route. I went for RT and have no regrets about doing so.

Best wishes,

Chris

User

Posted 26 Aug 2019 at 16:00

Agree 💯 % with Chris, if you were getting a new kitchen fitted you get two or more quotes wouldn’t you? So dealing with your prostate cancer I would speak with the urologist and oncologists and then make your mind up as to what suits you

alan

User

Posted 26 Aug 2019 at 17:40

If you're in England (and probably other parts of the UK) and being treated under the NHS, your diagnosis and treatment recommendation should be handled by a multi-disciplinary team (MDT), not one consultant. This means the oncologists and urologists (and several other specialities) agree amongst themselves what your best treatment option is, and one of them (usually urology as they run the PCa MDT) reports that back to you. It is often the case with PCa that there's more than one treatment path, in which case you get to decide.

User

Posted 26 Aug 2019 at 18:41

I have to agree with Andy that the MDT should have reviewed your case and have included both an oncologist and a surgeon. In my case it was left to me, they prefer the patient to decide. They also worry about over treatment and I was offered Active Surveillance as long as I had a template biopsy. To me that sounded absolutely no go.

In your case with a tendency to bowel cancer perhaps the radiation will be a bad idea as people get cancer through the radiation. Although I obviously don't know that for your case.

I've not read anyone regretting what they choose although some regret that they weren't given choices usually because it was not recommended or permitted for medical reasons on the NHS. Probably on private treatment you can have what you can afford and is sensible.

I've said this a lot but I've absolutely never regretted having the op and still have options of radiation and none of my hormone time limitation taken if chance needs it.

It can depend on your condition. If you think its not time critical then you could ask for an appointment with an oncologist or ask why not. In my case it was said to be near the edge and was told an op could be 4 weeks so didn't want to wait over Xmas to meet someone else then go back to an op.

Edited by member 26 Aug 2019 at 19:14 | Reason: Not specified

User

Posted 26 Aug 2019 at 19:15

Looking back over my notes I was not offered RP because I didn’t have enough margin for the operation to be successful. I had 64% cancer in one lobe and 84 in the other, plus I had 3 cores that were 100% cancer. I have done a lot of research before deciding what to do I asked about bicalutamide instead of triptorelin but with my Gleason score of 9 I was warned against going for bicalutamide and that triptorelin would have a more positive outcome.

And yes it was an oncologist who gave me my options but that was only after it had been through MDT, but I don’t know what the make up of the MDT was but I presume it must’ve had urologist on it.

User

Posted 13 Nov 2019 at 18:47

As mentioned in another thread, it came out yesterday. Time to empty my catheter bag again.

It may be radical but, radiation and/or drug therapies do not fill me with confidence.

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