New to this site, just been diagnosed

User

Posted 27 Apr 2021 at 18:09

Hi everyone I’m new to this site, so I thought I would share my journey so far. My journey started in October 2020 aged 53 at the time. When describing my symptoms to my Doctor which were frequent need to urinate and never feeling that I emptied my bladder completely ( basically I would pass water and minutes later need to go again). He arranged for a PSA. Test results came back 6.9ng/ml. Second PSA test arranged for January 2021 results came back 8.4ng/ml. MRI SCAN requested by Doctor and appointment came through for March 2021 (what a nice 54th birthday present ) results came back Pi-Rads 4 shadow on right side of prostate. Received a letter from hospital appointment made for TRUS Biopsy for April 2021. Fast forward 2 weeks and I get a phone call stating appointment made for today 27/04/21 at 1030. Results of biopsy confirmed prostate cancer Gleason Score 4+3=7 Grade Group 3. Initial T stage T2a N 0 M 0 these stagings are pending results CT scan and Bone scan which I’m waiting to have, both scans have been requested as urgent. Consultant has given me 2 options which are HT and radiotherapy or a Da Vinci robot prostatectomy. I left the hospital with enough literature to start a small library. Any advise would be welcomed as at the moment I can’t even think straight never mind make a decision on which route to take

User

Posted 27 Apr 2021 at 18:30

Sorry you find yourself a member of our club, DJG. No "best choice", unfortunately, in terms of treatment. RP and RT have very similar long-term success rates. Basically a question of which set of side-effects you find less objectionable. I'd suggest reading or downloading the information sheets available on this site; they contain lots of really helpful information, and of course there are loads of people here who've gone down both treatment paths, so ask whatever questions may occur to you.

Personally I went down the HT/RT route and it wasn't too bad at all, but for various reasons I had little choice in the matter so I was spared the choice you're facing. Happy to answer any questions you may have about the RT side of things.

All the best,

Chris

User

Posted 27 Apr 2021 at 23:58

As Chris suggested, please order the fully comprehensive ‘Tool Kit’ information folder from the publications section of this website, to add to your library.

I would advise you to consult with an oncologist about your treatment options, and if you decide on surgery, seek out a proficient and prolific surgeon. My own surgeon said he wouldn’t recommend any family member to any surgeon who does less than 100 prostatectomies a year. He does about 400, and has done around 4000 in total.

I am three years on from surgery and as of now cancer-free, but I always ask my surgeon on his Christmas card whether it was him or his bloody pet robot Da Vinci that lost the two inches off my dick during my surgery!

Best of luck.

Cheers, John.

User

Posted 28 Apr 2021 at 06:04

Good advice above. I still remember that whirlwind of elevated PSA, MRI and a biopsy and the shock/disbelef that followed.

Anyway, I'm over a year past surgery now and life is pretty much back to normal. Have a look at my profile if you would like to know more and happy to answer any questions.

Good luck

User

Posted 28 Apr 2021 at 17:29

Hi, sorry you had to join us here.

Im 52, diagnosed May 20, had surgery September 20 and life is pretty much back to normal, clear biopsies and two good blood tests post surgery. Hope this helps you to think positive.

User

Posted 29 Apr 2021 at 19:28

Thanks to all the replies above and advice given. Well today I had my bone scan, will be about a week for the results to get back. I’m still reading about which way to go with treatment but tend to be leaning towards the surgery option, this is based on what I have read so far each has its own set of side affects it’s just trying to pick the less of two evils. Also another thing I have to take into account is my location which is West Wales so choice of hospitals is limited rp would take place in Swansea so 120 mile round everyday for a month or surgery in Cardiff 4 hour round trip but hopefully just one visit. One thing I forgot to ask the consultant when diagnosed was how long I have to make a decision on what route to take and Would the results of the cat and bone scan make any difference on what treatment would be offered,

User

Posted 29 Apr 2021 at 19:46

Well, yes, if the bone scan showed that the cancer had spread to your bones, it would then be incurable and you'd be looking at completely different treatment options intended not to cure your cancer, because that couldn't be done, but to extend your life as long as possible before the cancer killed you. Sorry to be grim, but that's the way it is.

However, with a PSA of 8 that is an EXTREMELY unlikely scenario. The bone scan is purely a routine part of diagnosis and it's almost certain to come back negative. You'll then be on a curative treatment path intended to get rid of the cancer and allow you to live a perfectly normal life. Don't be rushed into a decision. Make sure you talk to both a urologist about surgery and an oncologist about radiotherapy and other non-surgical treatments, and decide which is right for you.

Best wishes,

Chris

User

Posted 29 Apr 2021 at 21:21

With your grade you could be a candidate for HIFU. You may not be offered it at your local NHS but it is available if you push for it or get on a clinical trial. If I'd have had the option I would have gone for that, but my tumor was too big😥.

User

Posted 30 Apr 2021 at 18:11

Sorry you are here but welcome.....

There is lots of advice here, lots of us with similar stories and different ones. Some of us are young, some older but all in the same boat.

Keep positive and no matter what option you choose ... it will be the right one for you.

Cheers

Nick

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