Hello everyone, this is my first post on this site having been recommended to subscribe from anther site. First PSA was 18 and put on Prostap 3 and 37 RT tomotherapy sessions. After about 18 months PSA doubled twice to 2.17 from 0.533 24 weeks prior. Gallium 68 scan showed spread to seminal vesicles and mets in Pelvic bone. I am to start Abiraterone in 2 weeks as I am away from home on business. I asked about adjuvant chemo (Docetaxyl?) and was told to start with just the Abi.
Does anyone have any advice on my situation? Why would cancer return to seminal vesicles when they would have been targetted during RT? Am I now incurable with mets in Pelvic bone? I am reading books on confronting and dealing with death so advice would be very much appreciated!
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konichiwa12
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Well brother welcome to the group that no one wants to be part of. Not sure if this is quite the right place - fit , at this time , but welcome anyway. There are lots of great guys here , some of them extremely knowledgeable , many very wise with much experience and some of us with little to contribute but a bit of humor and brotherhood.
Not sure if you would be considered stage 4 metastatic... possibly something to talk to your oncologist and GP with first. Maybe we could get some others to chime and say what they think. Possibly not the best place to hang out at if it’s not totally necessary for you right now.
Just because a cancer is incurable doesn't mean it can't be lived with for a long time. Think of it as a disease you manage (like HIV or diabetes).
You probably did not get as much radiation to the distal ends of your seminal vesicles. Sometimes they do this to reduce urinary toxicity. If you want to, you can treat the seminal vesicles with high dose rate brachytherapy (if you can find a practitioner) and the pelvic bone mets with SBRT. I don't know if that will improve your prognosis, but if your radiation oncologist thinks it's safe, why not?
There is no information you presented that indicates that your demise is in the near future. I have been metastatic for 13 years and I work with many men who go 20 or more years. Each of our cancers are different, so each of us do have different outcomes, so don't automatically assume that the grim reaper is anywhere around the corner.
There is no evidence that using chemotherapy now would extend your survival and there is some evidence that using it with abi will not extend your survival, just increase your side effects.
Abiraterone and chemo should have the same results in your case. However, if you want to continue with your business Abiraterone makes sense, because a chemo has more side effects which could stop you to go to work.
I had my recurrence in a seminal vesicle radiated with SBRT/Cyberknife. Maybe they can use the fiducials in the prostate used for the last radiation for targeting, I had fiducials placed in the seminal vesicle. Then you could radiate all your lesions with SBRT within one week. Removing mets will lower your PSA value.
Do not think about death, there are many treatments available now which will let you live many years from now. E.g. Lu177, but I think you can save that for later.
I didn’t have fiducials as I couldn’t have Brachytherapy due to Lymph node involvement. I am researching SBRT so I can discuss upon my return. I am hoping that as CT and bone scan detected nothing and PSA 2.17 that I have a chance of the Abiraterone working for a couple of years at least!
I know several patients with bone mets who live longer than ten years now, however, they suffer from the side effects of their treatments.
If you manage to radiate the seminal vesicle and the bone mets there is less tumor in your body and usally the PSA value will go down again. So you may not need to take Abiraterone now.
Thank you GP24. I had Image Guided Radiotherapy but fiducials were not inserted. I had 4 tattoos around the treatment area and the first part of each fraction session was a CT scan in the tomotherapy machine to provide correct alignment. My oncologist said on the phone that I would be starting on Abiraterone when I get back.
Thank you very much for your replies. For the short term then I would like to make a consolidated list of what to discuss with my Oncologist. I don't return to England until 6th December and won't have meeting until 11th December. I only get private consultations on Wednesday evenings.
Agenda:
Summary/levelling of all PSMA scan findings
Confirmation of new staging - IVb (from T3b N1 M0>>M1)
Rationale to have the Abiraterone
Any other short term treatments based on scans to be planned now (Seminal vesicles?)
Rationale for 2 weekly blood tests he has suggested
Options for the future?
Please advise any additions or erroneous items I have added?
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Decision time – looking for opinions/advice please
mcrpc , stage iv with aggressive treatments
Radiation Treatment Decision
