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Diagnosed one year ago

Reklaw
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Hi there

first post to this forum I was diagnosed

with prostate cancer 12 months ago with Gleason score of  Gleason 7 3-4 so choose 

active survalence whichI have found suited me psa has resently gone up to 9.2 so I’m off for another biopsy and scan and to be honest I’m expecting to be told that active survalence May no longer be an option it would be great to hear from anyone who has had treatment 

so may help me choose bearing in mind I am only 56 and still have an active sex life .

ps at moment I have no symptoms it was only found via PSA test 

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    Hi reklaw welcome I'm surprised with gleason 7 you aren't on treatment mine was 8, psa 1581, stage 4 over 3 years now they put me on hormone therapy then cemo. If you're gleason 7 it could have gone outside the prostate. Mine is lymph nodes spine, ribs and pelvis, and one lung. It's not curable.

    Billy

    P.s there is [@woodworm]‍ and [@telemando]‍ have similar to you 

  • Offline in reply to Billygoat

    Thanks for reply Billy interesting to see how psa levels vary compared to Gleason scores l was advised by specialists at the time that I was at the low end of scores but interesting to see how much higher your psa was I have now looked at other to members and will be contacting thanks 

     Recklaw

  • Offline in reply to Reklaw

    Hi the gleason score is the main one 6 is mainly just prostate as it gets higher it spreads more, good luck.

    Billy 

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    Hi Reklaw

    I had a robotic radical prostatectomy back in 2010. My PSA was 5.6, Gleason 3+4. I was 56 at the time.

    Happy to answer any questions you might have.

     

     

  • Offline in reply to telemando

    Thanks for reply 

    I was wondering did they actually find a tumar with you or just active cells as in my case,hence you opted for operation strieght away,

    Its great that your prostatectomy went so well and fills me with incoragement you obviously preferred that option as opposed to radiation therapy was there a reason or just your preference and was active survalence a choice offered to you.

    Since your operation have you suffered from ED as understand this goes with the territory .

    Thanks for taking time to answer and if anyone else has any advise would be greatly appreciated.

    regards Reklaw

  • Offline in reply to Reklaw

    Hi Reklaw.

    I'm not a doctor, but I picked up a lot of information along the way.

    Even though it was only in 2010, MRI imaging of the prostate wasn't as advanced as it is now, and my prostate on the MRI scan looked completely normal and featureless. So there was no tumour apparent on the image. I'd also had numerous DREs which had not picked up any lumps or bumps, until the very last one I had where the surgeon said he felt a bump on one side. The biopsy found cancer on one side only.

    I got the impression that they wanted to begin treatment due to the presence of Gleason 4 cells. If my cancer had been 3+3 then maybe they would have offered me active surveillance. I discussed treatment options with an oncologist, and radiotherapy was contra-indicated due to my history of bowel problems (mainly IBS).  Instead I was offered robotic surgery at a nearby high-volume treatment centre. 

    After surgery, the removed organ was examined in the path lab where they found some good and bad news.  The bad news was that the cancer was actually on both sides of the organ, and the good news was that the Gleason grade was downgraded to 3+3 from 3+4.  However, the cancer was still fully contained within the organ and no further treatment was necessary.

    I recovered urinary continence reasonably quickly. I stopped wearing daytime pads at 6 months, and after many months with no issue, threw away my nighttime pads after 12 months. 

    Unfortunately, I was not so lucky with ED.  After feeling a lump on one side, the surgeon didn't want to do nerve sparing on that side.  Many men are ok with one sided nerve sparing, but not me. Apart from odd random instances, my little soldier refuses to stand to attention. I tried a few treatments such as Viagra and Cialis, etc, but nothing really worked. I could have tried injections, but although I'm not even slightly squeamish, I decided that was going too far.  

    I think that if you're considering surgery then you need to discuss with the surgeon whether or not you can have nerve sparing on both sides. You need to be aware that there is some risk of recurrence with this which is why the surgeon didn't want to do it on both sides with me.  

    If you're considering radiotherapy then I read just yesterday of a new trial where some gel is injected behind the prostate before starting treatment. The gel absorbs some of the radiation and hence protects the organs and tissues behind the prostate. This is supposed to minimise the possible side effects of radiation treatment. It might be worth asking if you can get put on this trial. 

    Hope you find this useful. 

  • Offline in reply to Reklaw

    Hi,

    I was diagnosed with prostate cancer a few years ago now. My PSA was 70 and my gleeson was 6.

    Luckily the cancer was still contained withing the prostate and I was offered hormone therapy folowed by radiotherapy. I suffered with ED straight away andI was also diagnosed with diabtes which also causes ED. So I didnt stand much chance. I was told the hormones should have flushed out of my system in a year but I still kepy getting the HOT FLUSHES which also go with hormone therapy for abot three to four years after finishing with the h/t But I reamin convinced it was a small price to pay for the result I got 

    But the treatment was very sucessful and my PSA dropped to 0.01. It is now slowly creeping up a little just like the specialist said it would but its still very low. They do carry out regular PSA tests  

    I wish you all the best, Brian

  • Offline in reply to Reklaw

    In response to telemando and the Woodworm

    Thank you both for your advice I am finding it very helpful and understanding it a lot better now sounds like everyone’s case has difrent problems and outcomes and have started to get my head around it. My next scan is may 30 from which I hope they will be able to sort the next part of my journey I will keep you all informed on how my situation progresses and disicions I make

     Thanks again Reklaw

  • Offline in reply to Reklaw

    Hi reklaw I don't know if you realised but I still have my prostate once C spreads into lymph nodes and further its waste of time taking it out. Also ED can be permanent because C does to much damage. To surrounding area. Hope you're soon sorted out. Best wishes.

    Billy

    P.s don't forget to let everyone know what happens. 

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