prostate cancer

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I have stage 3tc prostate cancer PSA 9.7 Gleason 9 on all 12 cores

started hormone therapy to slow it down now deciding what to do now

I hear the cancer will get around this treatment so i have to make a choice i am considering radiation treatment but have come across people that this cancer returns and then what do you do. what about hifu also i am looking into trials as i have an appointment with a gene analyst as I want to see if I am missing this PTEN gene . So I am looking to see how everybody else treatment is working for them . I am 64 years old and in good health otherwise

Thank you

Henry

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  • Posted

    Hello Henry, sorry to hear your situation. I had treatment back in 2015/16 Gleeson score 7 psa 8. Hormone tablets and injection followed by 28 sessions of RT.

    Six weeks after treatment finished almost zero psa and thankfully it has remained so

    Good luck. Richard

    • Posted

      Thank you for your reply

      how long did you wait before you did radiation and did you do protron and do you know anybody who did the seeds

      Thank you

      Henry C

    • Posted

      I did the standard 35 sessions of IMRT on the NHS. I did the RT pretty soon after the HT. I didn't have the option of PBT or HIFU - my PCa was breaking through the capsule so I didn't want it to be too targeted.

      I do know someone who had the seeds but they were in their early 40s. As I said, I am glad I did the IMRT - very boring at the time but I didn't trust a surgeon and I had read too many horror stories - mostly on this forum.

      All the best.

  • Posted

    I am in exactly the same boat as RichardKen and I have never regretted my decision to opt for RT.

    Good luck!

    • Posted

      I think a lot depends on how advanced the cancer is/was and how severe. I was very fortunate in that it was caught. quite early. My first thoughts were remove the prostrate but I was advised that the route I took might be the best. In the event I think it was the right choice!

      Cheers Richard

    • Posted

      Psychologically surgery appeals - there is something sinister inside me so I want to cut it out. Not only does this not seem to be the best course of action but there are quality of life factors to consider.

      FWIW, I think you did the right thing.

    • Posted

      Thanks David. It all seems to have worked out well so far Cheers, Richard

  • Posted

    I was diagnosed with prostate cancer when I was 59 in 1996. I had undergone a TURP to ease my restricted urine flow and it worked. They did a biopsy on the material removed and found traces of cancer. A further needle biopsy via the rectum found the cancer to be well spread. I was given the choice of Surgery, RT or wait and see. Not Hormone. I was told that if I went for RT I could not have surgery after but I could have surgery and RT after if it returned. Wait and see was not recommended. I went for surgery via the old fashioned method. No robotics in those days. I was in hospital for 6 days and it took me about a month to get over it. I went for PSA tests every month for three months then every six months. The count was 0.02. But after six years the count started to rise again so I was given 37 doses of RT. I went in every morning except Sat and Sun. Very wearing but not that bad. I had PSA tests every month for six months and then every 6 months then every year until 3 years ago when it was considered no longer necessary as it did not register. Today 23 years later at 82 I am still clear. I have had stage 2 melanoma last year on my arm which was removed and I have to go for regular checks for that. I am told that if one has the cancer gene it is likely to pop up somewhere else but getting it treated early is the answer. So Henry be positive and decisive.

    • Posted

      Thank you BigTeddy for your reply. It was a great help and appreciate it. I ask for anybody else to let me know what road they took and how it worked out for them. This cancer thing is really amazing as I have been doing a lot of research. I am getting my dna tested to see if i have that PTEN gene as that has alot to do of the growth of the cancer cells. I am queues on how many people acted right away or did they take their time. I know it is different for everybody as for the aggression of it .

      Mine is very aggressive and that is the reason I decided to do the hormone treatment to slow it down till I decide what road I am going to take

      Thank you

      HenryC

    • Posted

      Hello Henry, I had the seed implants - Brachytherapy. I was diagnosed in 2016 at age 66 with prostate cancer. My PSA was 5.9, and a biopsy showed 2 out of 12 samples contained cancer cells. My Gleason score was 6.5. The cancer cells were identified as adenocarcinoma - which I was told is a non aggressive type cancer. I met with an oncologist along with my urologist to discuss my options. Wait and see was one... however I didn't want that, basically knowing that I had cancer cells in my body that could spread and advance. And if I waited, I might have other health issues to deal with along with the prostate cancer. Other options were high beam radiation - 36 treatments done over 8 weeks. Cyberknife was another option. That was 5 treatments at 45 minutes each. The next option was the Brachytherapy. Low Dose radiation seed implants. They told me that I was a good candidate for that. It is a one time treatment that takes about 45 minutes and is done as an outpatient. You are anesthetized for the procedure. Once you are awake, and can pee a couple of times for them, you can go home. I was sore for several days, but doing okay. Some burning when urinating for the first week or so, but it got better. The low dose radiation helps reduce the risk of burning surrounding tissues like the colon and bladder. I did have some discomfort with my urethra on and off, but ibuprofen helped with the inflammation and discomfort. I was put on Flomax and Avodart to help urine flow, and at one point I had to double up on the Flomax for a short time. The reason for that is that I would get up at night to urinate, and I couldn't empty my bladder completely. That passed and after a few months, I didn't have to take any of those medications. After 6 months, my PSA was down to 0.18. As with all treatments, there are side effects. But at least the ones I had were minimal. All side effects were gone after about 8 months. I am now at the 3 year point and all is well and good and everything works as it should. No incontinence and no erectile dysfunction. If I can tell you anything more, please just ask. Good luck to you.

    • Posted

      I just read your post on Low Dose Brachy and so wish I had done so instead of HDR Brachy.........I read the studies on HDR Brachy posted on Prostate Cancer Foundation and that UCSF , Stanford and UCLA all doing HDR and no longer doing low dose.....Same at the famous Seattle prostate cancer treatment center.......so I went with HDR a year 18 months ago, began with pain on urination and urgency in May then blood seen in June and then a local hack performed a rigid cystoscopy on me and injured my right ureter.

      Now have radiation/hematuria cystitis probably for the rest of my life or risk hearing / eye sight in 30 ea 90 minute treatments of Hyper Baric Oxygen Therapy only non invasive cure for radiation cystitis ....I was told low dose seed implants could migrate......so what they are harmless after 2 weeks ........I have no idea why the large clinics are not doing low dose implants....believe it is best way to go for gleason T2a 6 to favorable 7 gleason score with low PSA ......

    • Posted

      Thank you for your information

      I do not know why i did not get this 7 months ago

      I might of thought of doing that instead I went with the 45 days of radiation

      I am also on the adt treatment . the psa numbers are down . My concern is this they say they never actually kill the cancer so when this cancer gets to survive without testosterone then it grows more aggressively . I am on adt treatments and want to take a break so i have to see what the out come is .

      Stay well

      Henry C

  • Posted

    Have you had a PSMA PET CT scan? This is regarded as the gold standard for imaging the spread (if any) of PCa through the body. It helps a great deal when determining treatment.

    • Posted

      i have had a bone scan an MRI a cat scan all with and without contrast

      gleason 9 on all 12 saw it spread to both loves and veins

    • Posted

      Sorry to hear of that that diagnosis. I too am a Gleason 9 but only one lobe. Are you getting hormone shots monthly or 3-monthly?

      Have you discussed radiation with your urologist?

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