Hi everyone

Fresh - Thanks, I made a typo in my profile. So it should have been 5% G4 (95% G3) for the RHS. LHS was 3+4 (5% G4)

."I am reminded of the fact that 20+ years ago if a women had breast cancer then they invariably had a mastectomy. Today my understanding is that fewer than 5% of women with breast cancer have a mastectomy. I believe that the same improvements will happen for PCa treatments."

Peter, that is a view more and more frequently expressed at urological conferences etc. It is said that in a few years, people will look back in horror at radical prostatectomy!

Edited by member 10 Sep 2018 at 22:08  | Reason: Not specified

Thanks for all the responses. If nothing else this has has given me more questions to get answers to.

I hope to have better/more complete information by the end of this week.

To answer some of the questions (and I will need to triple check this is correct at my next appt):

1) I had a MpMRI - no idea of resolution or PARIDS score (or what that is, so I'll look that up!)

2) After this, all I know was there was an area that gave cause for concern and I was referred for a targeted TRUS biopsy.

3) During the biopsy they took 6 cores from the RHS of the gland (where there was no suspected issue) - this gave Gleason 3+3. I core positive for cancer, < 5% by volume. LHS (the suspicious side) they took 7 cores. 6 positive with GS of 3+4. 50% cancer by volume of which 5% Gleason 4 - I need to check if this is 5% of the whole core or 5% of the 50%....ie 2.5% of the whole core.

4) When I was given the results I asked for a copy of the pathology report but was told they are not routinely given to patients - I will be asking again during this week's appt.

My thoughts are the RHS is relatively indolent and AS would be appropriate. The LHS is mostly 3+3 with a marginal amount of 4...so again wondering if actually AS would be fine...

One question is whether it's worth getting the biopsy validated somewhere else and where the appropriate place to do that would be?

I had kind of started to come around to the idea of surgery, but when I started to examine the definition of "continent" *(1 or 2 pads a day) and "no ED" (yes, you'll likely have ED unless you use pills/injections/Vacuum pumps/implants) I started to think about whether I really wanted to live for the next 10/20/more? years having to deal with that. + the fact that recurrence is still a possibility.

Also wondered about HIFU - it's not been offered and I don't know if my cancer would be a candidate. I do have some private cover through work, so thinking about exploring that as a non invasive delaying tactic. So therefore, in order of preference, I think: AS, HIFU, Brachy, EBRT, Surgery.

I'm torn between taking the most aggressive measures to try to get rid of this vs taking agressive measures if the cancer is deemed aggressive and less aggressive measures if it isn't - with the thought to buy some time until the research/treatments progress a bit. The logic of ripping out the entire prostate just seems questionable to me - why not just remove everything from the pelvis down to be sure?! And why have they got to remove a chunk of urethra? - surely if it can be left undamaged with a TURP, the same could be done during a RP??

On the other hand, hoping the bone scan is clear and that this whole discussion isn't moot :(

Lot's to ponder, but appreciating the insights

I’m not sure I totally agree with Fresh’s interpretation of the aims of treating PCa, but this is my opinion and I really don’t want to be controversial and upset anybody.

I don’t see the aim of all treatments being to “destroy the prostate”.

my RT was specially designed on IMRT with ultrasound support, and computer modelled to the shape of my prostate and my level of cancer.

As I was treated I could hear the interleaved lead sheets in the treatment head shuffling around to form the perimeter of my prostate to help limit collateral damage.

I asked the lead radiologist what happens in my prostate after treatment, was I going to be left with an empty prostate after my body dealt with the 80% of destroyed cells that were cancerous. She told me the body would evacuate the dead cancer cells then the prostate cells can regrow and this action can cause a rise in PSA levels.

so, lots for me to think about post Radiotherapy, including a very small chance the Radiotherapy can cause bladder or bowel cancer in 5 to 10 years time. 

We all know that everyones situation is different, and there are so many variations that people suffer from, plus the age situation. Coupled with that, different NHS Trusts and different Oncologists all have a certain degree of differing opinions on what’s best for every different patient. 

I can see the benefit of “having it out”, as then more options can then be explored should PCa resurface. For me as a HT RT patient if I get a resurgence it will be mainly due to my cancer becoming “Hormone resistant”. But, as I am on 3 years HT I am hoping that any cancerous cells that manage to survive the RT will be starved to death before becoming resistant.