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PSA climbs over 5- 12 years after surgery

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Posted 10/22/2013 5:32 PM (GMT 0)
I am 72 years old.  12 years ago i was diagnosed with PC with a gleason 9.  I had my prostate and all surrounding tissue and nerves removed by Dr. Olsson out of Columbia Pres in NY.

For most of the 12 years my PSA was range bound in the 2-3 area, but recently over the past 2 years its starting to move.  My doctor has maintained that when it gets over 5, (now 5.3), we will most likely need to begin hormone therapy.

I've lived a mostly normal (ex sex) life these past 12 years, quality of life has been fantastic.  Doctors say that I've been very lucky that my PSA stayed low over these 12 years. 

Now i'm terrified at the though of hormone therapy.  Doctor is sending me for scans and then wants to re look at PSA in January, most likely we will begin therapy then.  He tells me that they want to wait for the last possible moment before the cancer hits my bones...though they really don't know when that will be.

I never go on these types of forums, and generally think i have gotten good advice from the folks at columbia presb, i wanted to throw this out to the community to see what people think.  Should i do the hormone therapy or not..

Thanks.

Posted 10/22/2013 6:04 PM (GMT 0)
hi,

It is really difficult to offer an opinion, we don´t know whether you have any other issues with your health that HT might affect. Many men here have done SRT after the failed surgery, in other words "radiation of the prostate bed" with hopes to get the cancer that may still be in the area. Sometimes SRT works, sometimes not if the cancer cells are in the area not covered with radiation. Some highly specialized doctors order sensitive scanning which is not widely available but it does exist (!), like C11 Choline, C11 Acetate CT scans, or Feraheme MR, that may be able to identify prostate cancer activity, usually when PSA goes over 2. Again, it is difficult to know if you would be a candidate for radiation as we do not know your entire medical history.

There are some men here that are letting their PSA go up, and they have agreement with their doctors not to start HT till the bone scan is positive (the reason, I believe, are quality of life issues). Dr.Walsh quotes studies that offer no survival advantage to HT started early vs. late, once the bone mets are visible on the scan. On the other hand, there are plenty of doctors who, like your´s, believe in early HT. One reasoning behind this approach is that time till hormone resistance is dependent on the disease load. Men with bone mets develop hormone resistance earlier than men with rising PSA after surgery. But this is very individual, there are members on this board whose cases prove otherwise.

Hope more guys write so that you get more opinions. In any circumstance, and whatever you decide, you have many years of life before you. Your chances of dying of PC are, frankly, very,very low.
Posted 10/22/2013 6:18 PM (GMT 0)
Thank you for responding. I didn't radiate the prostate bed. reason was that i believe the cancer escaped the capsule-
Posted 10/22/2013 6:41 PM (GMT 0)
Not sure if I understand. If at the time of the surgery, the doctors believed based on pathology that cancer had escaped the capsule (the outer layer of cells of the prostate), they would have offered radiation "to mop up" whatever cells escaped the prostate, that is almost a standard practice, I believe. If your cancer was believed to be systemic, e.g. lymph nodes, then the standard route is what you are describing now: wait or HT down the road. Systemic disease is treated with hormone therapy. Some doctors believe that since prostate cancer is a slow developing disease, that there is a time window of opportunity to catch PC before it becomes systemic.
Again, it is difficult to say without knowing your medical history.
Posted 10/22/2013 6:57 PM (GMT 0)
fi41,

Welcome to the forum. Sorry you find yourself here but glad you found us.

It's alway fair to talk to more doctors. It might be worth looking into radiation. With your PSA being measurable but relatively stable for so long after surgery it doesn't sound like whatever your surgeon missed is particularly aggressive. It might still be in the area of the prostate bed waiting to be zapped. But, of course, only your doctors can help you figure that out.

As for the hormones, I've been on them for fifteen months now and, for me at least, they aren't that bad. I got my sixth three-month shot today and I joked with the nurse that it was a big day for preventative shots. My first shot would prevent me from getting shingles and the one she was giving me would prevent me from having any fun at all in the next four months.

You might ask your doctor about "intermittent" hormones. That is when they start you on hormones and wait for your PSA to come down. When it gets low enough they stop the hormones and let you have a "vacation" until your PSA starts to go up again. That gives men a chance to take a break from the side effects which are hot-flashes (most men) and fatigue (most men) and bone and muscle loss (some men) and loss of libido (almost everybody). I am doing a 24 month stint to make my radiation work better and I know that being able to look forward to a time when I get to stop the hormones makes the side effects more tolerable.
Posted 10/22/2013 8:34 PM (GMT 0)
Welcome aboard fi41! Glad you found us.

At least you have been able to have a pretty normal life after surgery for quite sometime before having to deal with this again. I may have to do the same down the road. I can't help you with experience in therapy because have none but there are MANY men here that can give you advice.

Stick around, join our party, there are no dues or fees. We have a good time, buy each other cyber drinks and celebrate major milestones.

Bill from Florida cool
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