Prostate Cancer (Gleason Score 5+4)

Good afternoon All,

My name is Adebo, and I was diagnosed last week with prostate cancer. My Gleason score is 5+4, which appears to suggest there is a strong risk of the cancer spreading, but at the moment the cancer is localised in the prostate. I have received a letter from the hospital suggesting External beam radiotherapy & Robotic Prostatectomy are the preferred treatments, but I am yet to have a meeting with the medical team to discuss my treatment. I understand that radiotherapy is not recommended for men under the age of 60, which means my only option is Robotic Prostatectomy. I am 52yrs old and have no visible or physical symptoms. 

I was wondering whether anyone could provide me with any sort of advice.

Thank you all in advance

  • Adebo, life’s a b****!!

    I was 59 at diagnosis, Gleason 9 too, T3a, PSA 11.5, tumour had broken through wall of prostate.

    That was two years ago, can’t remember what oral drugs I was put on but had my first 6 month injection in July 22 after my CT scan and bone X-ray, hormones can affect the results.

    The consultant said he was throwing everything at it, went for Spacor gel but there was an issue with my bowel so needed a colonoscopy, all clear.

    Had HDR in early Dec 22, markers placed in tumour for later radiation therapy which started early Jan 23. I had 25 sessions.

    i was supposed to be referred to medical oncology but letter went astray and it was not made clear that this was an essential part of my treatment.

    I saw consultant again in August, PSA now undetectable, he then resent the referral, I am very lucky my PSA was so low as I’d missed nearly 8 months of treatment.

    In October I was immediately put on steroids and Aberaterone which targets other parts of the body as the injections only target the prostate.

    Hot flashes were still there, 50 mg of Androcur cure the worst of them.

    I’ve two years of oral hormone treatment, they are 1000mg and the size of a horse suppository and another two 6 monthly injections, next one in July.

    I’ve a physical outdoor job which is difficult at times but keeps the mind active, usually wake up in middle of night, no worries just can’t sleep when I want to, and can’t sleep when I need too, life’s a b!tch but I’m still here putting up a good fight. 

    Best of luck with your journey, here if you have any questions,  Justin.

  • Offline in reply to Jpmf40

    Hi Justin,

    Thank you for your response, life is indeed a B***h.

    My cancer has also broken through the prostate, but still resides in the pelvic area. My consultant also used a similar analogy 'Going to throw the kitchen sink at it'.

    it is not curable but treatable they say. I am going to have 4 weeks of Bicalutamide (Oral hormone), then LHRH analogue injection in 2 weeks time, which I will have every 3 months for the foreseeable future. I will have a Dexa scan to check the health of my bones. I will have chemotherapy and radiotherapy early next year.

    I am am sorry to hear that you missed your appointment for 8 months, but I am glad to hear that your PSA level has reduced drastically.

    25 sessions of radiotherapy that is 5 weeks of therapy. How did you feel after these sessions?

    I have been warned about hot flashes, but some gentlemen on this forum have also giving me sound advice as which medication to take.

    Why were you prescribed steroids?

    Thank you so much for reaching out Justin, really appreciate it.

    I am sure that I will be contacting you in future, take care and God Bless

  • Offline in reply to eddiel

    Hi Eddie 

    How are you doing. I finally had my PET scan and the cancer has spread beyond the prostate. still in the pelvic region. Started oral hormone treatment, which will lead to injections and then chemo and radiotherapy. my journey has just begun.

    Hope and pray your treatments continue to generate positive results

    take care and chat soon

  • Offline in reply to Adebo

    Hello again Adebo, just read your posts, who has told you that your not curable, your PCa may have broken the shell and be aggressive but it has not spread to anywhere else, and as they have suggested a prostatectomy this suggests it hasn't spread either I know many who have been successfully treated from this situation and many, myself included under 60yo who have had RT,  best wishes with the triplet therapy my friend, take care.

    Eddie

  • Offline in reply to Adebo

    Adebo,  5 weeks of radiation was hard, drinking water so your bladder is full and floats out of harms way. More than once my session was delayed and I needed a bottle as I would never have made the loo.

    Bowels need to be empty, managed to avoid the enemas, diarrhoea is an unavoidable consequence, might take a week or two but when it kicks in......the urgency is hard to take, don't delay, MOVE!! That will last for some time after the radiation is finished.

    I still managed to keep working, physical outside work, luckily I'm self employed so I could work at my own pace, that kept me going. Couldn't imagine sitting inside feeling sorry for myself.

    Six monthly Prostrap slow release hormone injections. What chance does my sex life have of surviving this....none.

    Consultant told me I'd never have penetrive sex again, defied him twice, but since I started the Aberaterone hormone I'm well and truly bo.....d, my switch has been well and truly turned off, I'm very lucky my partner is so understanding and we connect physically in other ways, most importantly.

    The Aberaterone stops the production of testosterone and the bodies own steroids so I have to take them orally to keep the balance. hence the regular blood tests to monitor my potassium levels, so far so good.

    One brand of Aberaterone I got had terrible affects on my joints, it dries them out, I could hardly walk in December 23. X-rays show arthritic hips and one knee. Once I went back to the original brand I'm much more agile.

    Androcur for hot flushes, I'm on 50mg once a day.

    Keep the bright side out and fight the good fight.

  • Offline in reply to eddiel

    Hi Eddie, your messages always brings a smile to my face and gives me courage, so thank you.

    My consultant told me       

    Prostatectomy is no longer an option since the PET scan. it is now down to HT chemo and RT. I seem to think that Prostatectomy is the only way of curing cancer, pls correct me if I am wrong, but I have read that cancer that has extended beyond the prostate is not curable. I have also read that cancer that is within the pelvic is still curable. A lot of conflicting information, but I am taking it a day at the time.

    Pray your treatment continue to yield positive result.

    take care

    Adebo                              

  • Offline in reply to Jpmf40

    Thanks for the info Justin. I guess I have a lot to look forward. it is always great to have an understanding partner. I hope you get your libido back.

    Thanks again and Stay strong. Have a good weekend.

  • Offline in reply to Adebo

    Hi Adebo, the statistics show that surgery and HT+RT produce very similar results regarding being cured, if anything HT+RT are slightly better. so surgery is definitely not the only way to cure. If the cancer has escaped the shell to one or two nodes or just got to seminal vesicles, places close to the prostate, locally advanced prostate cancer, LAPCa, treatment with intent to cure is very possible, and if not it can be controlled for many many years, advanced prostate cancer APCa, treatment where mets are seen well away from the prostate can in one or two instances can be cured but mostly controlling the cancer is the priority, take care.

    Eddie

  • Offline in reply to eddiel

    Morning Eddie

    How are you doing, Sir.

    I have been having issues with my log in details.

    Hope your treatment is continuing to generate more and more positive results.

    I have started my taking oral hormone therapy tablets (i.e. Bicalutamide 50mg) some weeks back. I completed my course. I was giving Decapeptyl injection about a month ago, and it is yielding some positive results. I have to take a similar injection with a higher dosage on 25th July, which will last for 3 months, I have also been informed that my chemotherapy session will commence in the next week or so. As a matter of fact I have a pre-chemotherapy assessment today. I have been told it is safe but the volume and type of side effects that one is susceptible is a bit scary.

  • Offline in reply to Jpmf40

    Morning Justin,

    How are you keeping. 

    Hope you are okay

    I was just looking at your initial post. I was just wondering whether or not you had any chemotherapy prior to having your radiotherapy