Hi everyone. I saw the doctor yesterday and am convinced I now need to begin hormone and salvage radiation therapy. I'm told the hormone shots will be Firmagon and radiation with a "broad brush" over the entire pelvic area for 8 weeks. I've been resisting the idea, but I give up! Side effects of these two treatments can be minimal to severe, which is why I hesitate. I was told after surgery a year ago that the odds of me being cured were only 15% and with these two therapies the odds of complete cure is a whopping 20%!
Can anyone please provide me with experience and/or opinion? Is 5% increase in odds really worth going through all this? Might there be any other options? My issue is that the cancer escaped the prostate and of 6 lymph nodes, one was involved. However, no seminal vesical involvement and negative margins were achieved. To some this may seem like a no brainer, which it would be with better odds... life is precious. However, given possible complications, it's a lot to endure if ending result is not successful.
I'm about to have the Decipher test done, so perhaps that will shed addional light on my particular situation. Anyone else familiar with this test and usefulness?
Thanks in advance for any additional information or support!
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billd9946
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There's really no point to Decipher for you - that just gives a probability that the cancer has left the prostate. You already know that it has -- it's been already found in a lymph node. If it's in one LN, it's most likely in more. Lymph is a fluid that can carry cancer cells. Fortunately, it is much slower than blood, so it may still be trapped within that area.
The Stephenson nomogram is the one you probably used:
Well, that's excellent! It gives every indication for a good prognosis. If you'd said your PSA were high or rapidly doubling that might raise more suspicion that it got farther away. Keep in mind that there is a very limited dataset of men with exactly your post-RP stats included in that nomogram. And database analyses are not the same as a randomized clinical trial, but until we have that, we can only go by a couple of studies that say it works and one that says it doesn't:
Decipher is a waste of time for you since you do know that the cancer has escaped the gland.
Today, there not a need to do shot gun salvage radiation. The new contrasts can do a good job identifying specific targets which might be able to be treated with surgery o radiation. This approach should have less damage to healthy tissue. Is your doc a prostate cancer expert? An expert can guide you in finding the trials for the use of these contrast agents.
If your PSA is still 0.05 and not really rising (it can naturally be slightly different between tests), what makes you think it is time for radiation and ADT? My pattern is similar to yours, and I immediately did surgery, ADT and radiation (all within 6 months of my diagnosis). But I'm just curious if a year has already passed and your PSA is steady, why are you thinking that it's time for additional treatments?
Although some on here say that Decipher isn't valuable, my urologist did it post-surgically for me too. So I think there is a difference of opinion on the value of this test. It does more than just tell you if the cancer has escaped the prostate, it also is a predictor of the likelihood of 5-year recurrence and 10-year mortality if no additional treatment options are pursued. So I do think there is value to the test. my Decipher score was a whopping 0.88. Not so good.
After my surgery, I already had loss of sexual function, so nothing that radiation would do to me could make that worse. And i did not have continence issues, so my urologist and radiation oncologist both said that whatever my continence status was going into radiation was likely what it would be after radiation. So for me, pursuing radiation right away was really a no brainer. My attitude is to attack this cancer with everything I can while it's in a weakened condition. Then, hope it doesn't come back.
I am not a huge fan of ADT (I'm on Lupron). But if it buys me time, I'll deal with the side effects. For me, moderate hot flashes (magnesium supplements seem to help), moderate pain in the joints of my hands and trigger fingers, and weight gain in places that I don't normally gain weight, like my inner thighs and my legs rather than my stomach. Also some estrogen like effects, more emotional, etc. My testosterone is down to 2 now. PSA also 0.05 as of my August reading. My next test is in a few weeks and will be after my radiation treatments so it will be interesting to see if it goes down.
Best of luck. Remember that side effects can be treated, but we are fighting for our lives right now. Buy as much time as you can, because there are new treatments on the horizon. If we can buy ourselves 10 years, who knows what treatment options are awaiting us.
Thank you for such a thoughtful response! I had the same question concerning my low PSA. What several experts have told me is new data indicates that once your PSA reaches .03, radiation therapy should be started. As for the hormone therapy, I get mixed responses. Just today before getting my first Firmagon injection, the doctor wondered why I hadn't been started on hormone therapy immediately following surgery, given my less than favorable pathology report. It's enough to drive a person crazy! I'm one who second guesses everything, so you can imagine. Perhaps I research too much online, but radiation also seems scary to me, especially given what I've read about side effects that don't surface until years after treatment. The whole thing is mind boggling! However, I'm with you. Buying time seems like the best solution at this juncture in time. Thanks again and good luck with your treatment and next PSA test. I'm interested to know how it works out, if you have the time to provide updates.
So, I sought another opinion, this time from a Medical Oncologist at Hopkins. This after my first Firmagon injection and I'm due for a second injection next week. Incidentally, I've been fairly miserable since the injection... regretful within an hour of receiving it. The biggest issue is hot flashes that wake me up during the night. The MO advised that he would not recommend RT and ADT at this time for me, given my relatively low PSA of .05. He recommends waiting longer to see if there is a rise, and treatment if/ when it reaches .2. I asked whether getting the Firmagon injection might be harmful, especially if I don't move forward with the next injection or RT. He said that if anything, the injection would be helpful, given it immediately halted the testosterone that PC needs to grow. So... I'm 99% sure that I will forgo next week's shot and hold off on RT. This decision is mainly because the MO told me stats show that there would likely be no difference in outcome if I start today versus at PSA of .2. He advises that it could be many years before ADT and RT are needed, and that in the interim there might be another way to scan for and target PC cells with radiation, rather than the broad brush approach of Salvage RT and long term side effects. It's very confusing... I know I love life, but quality is an important factor, too.
Sounds daunting to say the least. Good luck to you.
May I recommend a book, "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones"? I wish I had read it prior to my journey with Firmagon and Lupron. Firmagon, one month. Lupron, 3 months (and perhaps 1 more 3 month injection in February). Although I think I've tolerated ADT relatively well, for me, ADT has been devastating; the emotional roller coaster has taken its toll (not to mention finding out that BP has gone up, bone density has gone down, hot flashes, etc.); oh, and the sexual side effects? Yikes. As others have recommended, if you start on ADT, force yourself to exercise. I'm no gym rat at all, but, exercise has helped me feel much better (and I hope it's helping bones and cardio. It can't hurt and, hopefully, will help).
Anyhoo, keep us posted on your progress.
EdinBaltimore
I went through both as my cancer returned three months after my RP. According to the lab my cancer type is more aggressive than most and even though there was no sign of it in lymph nodes, bone etc. I went ahead with the treatment. My cancer has invaded the bladder neck, seminal vesicles and lower sphincter muscle. The radiation, for me, was no big deal. The worst part of that was timing the water intake to protect the rectum. Now the HT, Lupron in my case, was a pain in the butt to put it mildly. I had a shot a few weeks before my radiation and then a second shot a month after radiation. In my case I had a lot of crippling pain in my fingers, shooting pains in my legs/feet, some blurry vision at times, weight gain in my midsection and of course ED and no interest in sex. Once I got off the Lupron 3 months after the second shot, my testosterone slowly returned to normal and my interest in sex returned. The RP did a job on my erections though as well as on controlling my urine. The new normal but soooo far my psa is undetectable at .008 the last 8 months. HOPE that continues. MAYBE all this will help you in your decisions. You know I wish you luck. In my case the theory is that probably a few cancer cells remained in the area of the prostate bed since the cancer had invaded the lower bladder.
Your theory sounds reasonable to me. Six months ago my PSA was .1 and three months later jumped to .15. My most recent PSA was .16, so it seems to have slowed down. I’m hoping that maybe it stabilizes and moves no higher, but that may be wishful thinking. Still, my oncologist at Hopkins maintains that stats are not conclusive enough to warrant radiation or hormone deprivation unless or until my PSA reaches .2. I hope I’m not making a mistake, but my research finds that even if radiation results in no ill effects, it can catch up later. Of course, that’s better than the cancer progressing, but I’m still not ready, especially given my oncologist’s stance on the issue. Good luck yo you, my friend. This is no picnic... that’s for sure.
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