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Saying hello and asking for advice

User
Posted 21 Jul 2017 at 09:19

Hi, I'm Steven, aged 49, living in London with my wife, Tess. Got the results of MRI guided biopsy on Wednesday - gleason 4+3. Still taking it in and trying to arm myself with enough information to decide which treatment to go for.


I feel fortunate to be at UCL where there appears to be a great team and the most up to date procedures. My tumour is in an anterior position and the urologist is suggesting just 2 options - either radiotherapy or cryotherapy.


Any advice welcome. Interested to learn if you have experience of either, or if you're a similar age to me. Also just happy to get a hello and some solidarity. It's all happening a bit quick.


Many thanks. Steven

User
Posted 21 Jul 2017 at 12:45

Hi Steven and welcome to this forum though sorry for the reason that brings you here.

Usually, the first option offered by a urologist is Prostatectomy but there may be some reason why this was not offered in your case. Cryotherapy is seldom given in the UK as a primary treatment and very few of our members have had it. Before making your treatment option, in your place I would want to now why Prostatectomy was excluded and want to seek the opinion of an oncologist regarding radiation of which there are several kinds/ways of delivering. Also, would you need to start HT and for how long after the RT? But even before this I would get the 'Toolkit' from the publications section of this charity to help you understand the various treatments.

I take it that UCL is what is shown on letterheads to me as University College London Hospitals as I had salvage HIFU there in 2015. Had my tumour not been reachable with HIFU, the alternative would have been Cryotherapy. These treatments were part of a trial. The team led by Prof 'E' (forum rules prevent giving names) is reputed to be the most experienced for Focal Therapy in the UK. Great treatment but I am not alone in having found their administration abysmal!

Barry
User
Posted 21 Jul 2017 at 13:50
Steven

I'm 46 and had a prostatectomy in December 2016. I can't comment on the treatments you've been offered, but like Barry, I'm wondering why prostatectomy isn't being discussed. My team was clear to me that because of my age, prostatectomy was the best route as it meant I could have radiotherapy as a second treatment.

I'd seriously be asking them to justify not offering prostatectomy.

Why not call one of the specialist nurses from PCUK? They're absolutely brilliant at explaining everything.

Good luck with your decision making. You're in the right place here for help, support and advice.

Ulsterman
User
Posted 21 Jul 2017 at 16:54

I think it's pretty obvious why they don't want to remove your prostate. The PCa is confined to the anterior (frontal) area and is easily zapped by the methods offered. Nothing really to chose between them in terms of outcomes. You are being offered a curative route. Go for it! If the PCa should schedule in later years (always a risk, but less so with your Gleason score) there are many treatment options available, with the number growing every year.

Good Luck and try not to worry, you're evidently in very good hands!

AC

User
Posted 22 Jul 2017 at 00:29

There are potential risks and side effects to all forms of treatment. Long term success and side effects of Cryotherapy have still to be assessed and it's use in the NHS is restricted viz https://prostatecanceruk.org/prostate-information/treatments/cryotherapy
The situation with regard to RT is better documented, although the benefit of ongoing improvements will take time to access. RT can induce other cancers in due course and there is no guarantee it will provide a cure even accompanied by HT. Furthermore, there are very few surgeons who will remove a radiated Prostate in the event of failed RT. Also, given the choice of RT or Prostatectomy, many men opt for the latter which is more widely adopted for younger men given both options notwithstanding the potential side effects.

Either the Cryotherapy being trialed by UCLH or RT (the generally less preferred option to Prostatectomy for younger men), may well give a very good result, however it is usual for a man to be given all options open to him so he may decide which to have. An opinion as to why you are not suitable for Prostatectomy is worth consideration.

Barry
User
Posted 22 Jul 2017 at 08:22

Thanks guys, I really appreciate the welcome and the very helpful comments. I've since had another meeting with another member of the urology team - consultant urological surgeon. He said the score I have shows some animal like cancer but also some monster like cancer. He confirmed that the position of my tumour is very unusual - only 5% of patients have anterior tumours.

He said it's probably been there growing for 2-3 years. My genetic history (lots of cancer) and the location and poor prognosis of of other treatments suggests (as Barry and Ulsterman suggest) that surgically removing whole prostate is the best option. Also I am young. Only 10% of patients are about my age. Side effect - erectile disfunction is likely, will not be able to ejaculate, may leak urine - so do pelvic floor exercises. He's confident he will save the nerves - 95% chance of complete cure (so long as it hasn't metastasised).

He's confident that radiotherapy for my (genetic) cancer will only be a temporary fix - it will come back and it will spread - the radiotherapy will severely damage the organ, will likely make me incontinent and will likely damage the bladder. It will also make future treatment very difficult. Like Barry said, the organ then becomes inoperable. The consultant said it was then butchery not surgery to remove it. The location makes cryotherapy very difficult (needles may not reach) and again it will likely return somewhere else. His advice is don't mess around - get the whole prostate removed.

As my wife and I were leaving the hospital we met a guy who was operated on 6 weeks ago - it was great to meet him - a golfer, who showed me his 5 small scars from the keyhole surgery.

So next I'm getting a PSMA PET test done, which may show the cancer having spread. If it hasn't, then I think I just go ahead with surgery, a date for which is already being arranged. Thanks again guys.

 
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