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I am 42 and recently have had a radical prostratectomy. Prior to surgery my PSA was 89 and had a gleason score of 9. Prior to surgery I also had chemo and hormone therapy.
Unfortunately the pathology came back and I had positive margins and it had spread to lymph nodes, 3 of 4 bladder necks and into the seminal vesicle.
Now I am left with the decision of whether or not I should get radiation treatment. I am unsure what to do at this point, I know there can be some serious long term side effects which can affect quality of life.
Just curious on the thoughts and or advice of others who may have gone through a similar situation.
Get the radiation. At age 56 I got the salvage treatment of 66 greys over 33 sessions along with hormone treatment at the same time. For me it was not a problem at all. I made sure to exercise (skiing and exercise bike)and ate about 1500 calories a day and still put on about 10 pounds but that came off after the hormone treatment wore off. I haven't suffered any ill effects that I know of from the radiation treatment but I know that some people do. It has now been five years since the radiation treatment and no detectable PSA.
How low did your PSA go on Chemo + Hormone therapy? Regardless of whether you decide to have radiation you need to find the best medical oncologist specializing in PC. It is likely your disease is systemic and you will require systemic therapy. What odds are they giving you that radiation will give you a cure?
Another suggestion would be a C-11 Acetate CT/PET scan. It will show the doc's where all of your cancer is located. They might be able to include any spots they find outside the pelvic radiation field and give you a better chance for a long term remission.
Radiation in all likelihood would be part of a treatment plan for you, but given your history as outlined, it would be most prudent to seek a referral to a medical oncologist as soon as possible. It is highly probable that you have advanced disease and you need some expert medical advice as a matter of urgency.
Ken, What others have said is quite right. I'm a way bit older than you (71) and had a slightly lower PSA at start-up, but once that number gets big, how big doesn't matter too much.
Radiation caused bladder cancer in me (I believe, medics can't say if I'm right, but it happened to my brother too), so that's an aspect to bear in mind. You may be one of the unfortunate few, but most likely not.
After various treatments for the bladder cancer, I had it and the prostate and associated lymph nodes out. Nothing in the removed lymph nodes so that was good news, as was the fact that no bladder cancer was found. However, I wasn't free of PCa as it became clear that it had spread locally (like yours) in my case to my urethra, where it is now controlled with abiraterone/prednisolone. Now, I've been facing this chronic disease (I refuse to think of it as a killer) for nearly eight years and am fit and well with every prospect of dying from something else (I hope many years hence).
You may be in for some worrying years ahead but despite the risks of radiotherapy, I'd go for it. I would do so again, even knowing what I know now.
Also be heartened by the fact that though the numbers suggest that the disease is systemic, as was suggested in my case, it may be confined locally, which would make it as treatable as mine has been. They may still describe it as advanced metastatic PCa but I believe your odds are a lot better than if it spreads to distant sites. There are lots of treatment options available these days should my present plan fail. Look ahead another eight years in your case and that will be even more so.
Do not be dispirited. You might be if you read my long blog on this site, but others have kindly said that they found it inspiring, so it's there if you want to see how my treatment went and how my feelings varied over the years. I hope you can tell that I'm extremely positive about my life prospects and I'd urge you to try to be also.