PSMA Results : I’m five years Post... - Prostate Cancer A...

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PSMA Results

Bcgkelly profile image
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I’m five years Post surgery including removal of prostate & lymph nodes. Gleason 8 with Intraductal. Sepsis, DVT/PE after surgery which left me with chronic fatigue, brain fog and bad overactive bladder with incontinence. Four years post stereotactic radiotherapy to the left iliac area following a PSMA scan in Germany. I didn’t have pelvic wide radiotherapy at the time as two radiation oncologists advised me that my bowel would not withstand it. I also didn’t have hormone treatment as I had a fear of it given the fatigue I already suffer. I live in Ireland. My PSA is currently 0.670, with a doubling time of approximately six months. I’ve just had a second PSMA and they found a spot in my left pubic bone, right iliac area and the prostate bed. They are now suggesting radiotherapy to the three areas together with hormone treatment. I assume that the radiotherapy is going to make my overactive bladder worse. I have read that in certain cases, adding 3 to 4 cycles of chemotherapy to both of these treatments can be curative and am wondering if anyone can advise me on this.

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Bcgkelly
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Tall_Allen profile image
Tall_Allen

There are no data I've seen that there is any way to cure it after it's reached the bone. But it can be managed for a long time.

There are also no convincing data that radiation to bone metastases slows progression. If it is safe, why not? Your RO can give you a good appraisal about whether it is safe.

Usually, men in your situation would start on ADT plus abiraterone. Whether adding docetaxel too would be beneficial is worth discussing with your oncologist. Triplet therapy (docetaxel+ADT+abiraterone) is usually given to men who are newly diagnosed with metastases, but it might be beneficial to men in your recurrent/metastatic situation too.

Bcgkelly profile image
Bcgkelly in reply to Tall_Allen

Thank you for such a quick and clear response. I will discuss the triple therapy with them.

JohnGelder profile image
JohnGelder

I had radiotherapy for localised prostate cancer 2 years ago and side effects did not affect me too much, though I did have fatigue and was not able to manage my 5k daily walks. No impact on urinary function or bowel function, though I did have SpaceOar fitted between bowel and bladder, which helped I think. Also underwent Hormone therapy with fatigue and hot flushes/sweats, and penile shrinkage, despite daily exercises and 5mg daily Taddadafil, being the main side effects.

Finished the above in October 2022. PSA doubled every three months and Onco sent me for MRI Scan. Discovered cancer radiotherapy had been a success on the prostate but meanwhile some cancer cells had 'escaped' and infected lymph nodes. Since August 2023 I've been on triple treatment where they throw everything at you. About to start last/sixth chemo cycle. Hormone therapy x2 will continue for two years +. Trial has shown 60% of patients' cancer had stabilised and 75% survived 40 months (no longer term data available as trial is quite new). Worst effects of chemo were irritation to stomach lining, fatigue, difficulty sleeping and chemo brain, worst during days 3-8 but manageable. Prescribed Tamazepan for sleeping 14 days out of 21. Also prescribed Tamsulosin to control peeing (reduces night time peeing and empties bladder during day) - very effective and is commonly prescribed to men with prostate cancer.

Worth asking about triple treatment as it seems effective. They may also prescribe radiotherapy as well, not sure but you could ask. You only get one shot with radiotherapy.

Good luck and take care, John

Bcgkelly profile image
Bcgkelly in reply to JohnGelder

thank you very much John for such a detailed response. It was exactly the type of information I was looking for and I will ask them about the triple therapy as I think it might be good for me in the long-term.

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