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Advice required about post RP radiotherapy

Ljewse
Posts: 1
Joined: Dec 2016

Hi there,

I'm the wife of a 45 year old so was diagnosed with Prostate cancer 16 months ago with a PSA 120 and a Gleason of 9. MIraculously the choline PET, bone scans and 3T MRIs didn't show that it had spread to other organs and he had an RP straight away by da Vinci robot. (And started Zolodex) Unfortunately he had a bowel injury and got sceptacemia, and therein followed a whole host of complications, including an ileostomy. You may have seen him raising awareness about Prostate cancer affecting men under 50 on Facebook in his pants, with colostomy bag and catheter in place - he reached about 25 million people with his message from England.  

 

He has had that ileostomy now reversed and has just finished 6 cycles of chemotherapy (docetaxel + prednisone) - tomorrow he has his scans for radiotherapy, as he did not achieve a clear margin (although lymph nodes were clear, vesciles were involved). His medical team believe in hitting this very very aggressive cancer with absolutely everything in their aresnal it would seem.  He currently has a PSA <0.03.

That's setting the scene really and would LOVE to hear from people who have had ALL the treatments and ask how they have got on.  For now though, he is facing radiotherapy of the prostate bed, what are your top tips for getting through it, how bad were the side effects and did you find ANY ways lf alleviating them?

Thanks so much for listening...I've already found many of these discussion topics useful!

xx

 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Ljewse,

I am sorry for the suffering you report. I am surprised that the scans were not practical in providing details of abnormalities, at least in the gland and its surroundings, in face of the high PSA, and now with the finding of seminal vesicles involvement. I wonder if you have obtained second opinions on those image studies by independent specialists. If you have not I would recommend you to do it now because these image studies will be important for the planning of the salvage radiotherapy. Please note that radiation is applied only once at the same area (there are possibilities in perforation of organs) so that its planning should be properly defined based on proper exams to assure the best shot.

I see his doctor's suggestion in treating aggressively this Gs9 cancer as based on "guessing". Surely, the actual facts lead to think that any existing cancer (if existent) would be localized. One knows that PCa commonly spread out of the prostate via the seminal vesicles. This finding justifies an attack of RT in the prostate bed. However, in regards to the positive margin finding; this alone does not assure an escape of the cancer. The margins next to the places where the gland has been detached (at the base close to the bladder and at the colon) always retract and are "reported" by the pathologist as existent. The PSA you report (0.03 ng/ml) though in remission levels (no cancer activity) may not be a true value as it may be under the influence of the Zoladex shot.

After RP, salvage radiotherapy (SRT) should be the next step if cancer is still existent (recurrence verified). I am not that confident that an earlier attack throwing arrows in the dark (on guessing basis) will provide better outcomes. You husband should also be aware of the side effects of the treatment that will add to the ones he already have.

Can you provide details regarding the timing of the Zoladex shot and its dose?

How about the symptoms that lead to cancer diagnosis 18 months ago?

Whatever you chose do it only after proper healing of the area. I also would recommend your husband to have a colonoscopy done before RT to check for existing ulcerative colitis. These would prohibit an attack of radiation to the affected areas.

In this link you may read reports of survivors about their RT experiences;

https://csn.cancer.org/node/306965

Best wishes in his continuing journey.

Merry Christmas

VGama

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