Hi all, this is my first post on this site, so I will offer a little background on my experience with prostate cancer.
I was diagnosed in 2016 with a 4+3 Gleason 7. I was 53 yrs old at the time. I opted for RP surgery and received not such good news after pathology was done. 1/4 of the prostate was consumed with grade 5 cancer that had already spread to several near by lymph nodes and some surrounding tissues (no bone mets on last PET scan, but that was 1 1/2 year ago). Not sure how they missed the high grade cancer in the biopsy, but they did. PSA at time of surgery was 15, and after surgery it was just under 12. I immediately started ADT with Eligard and Firmagon injections and a short stint on Casodex pills. PSA immediately dropped, but never stabilized, and bounced around from a low of .05 to 2.95. Now after 20 months on ADT, I have become castrate resistant with a PSA doubling time of 6 weeks. Just started Xtandi, but have only been on it for a week, so no blood work yet. PSA when I started Xtandi was just under 2 (don't recall exact number). I understand that 2 is a low PSA number, but I am very concerned about the rapid doubling time and the fact its grade 5 cancer that is metastatic, and now castrate resistant. My cancer Urologist seems to think he can keep it in check for several years, so Im wondering if I am more worried than I should be.
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joeguy
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Thanks, I have been considering consulting an Oncologist, but it was kind of my understanding that they really aren't needed until its time to consider intravenous chemo. Is that correct? Also I am in the Tulsa area, so I think the closest MD Anderson is in Houston.
You should be talking to a medical oncologist. They are the ones who specialize in medical treatments (hormone therapy, chemo, bone-protective agents, radiopharmaceuticals, immunotherapies, etc.). It's hard to hear 'don't worry" when you are worried. All I can say is worrying has no benefit to you, and right now you are doing fine - if you can, that would be a good thing to focus on.
Thanks, I will see if I can find a good PC Oncologist in the Tulsa area. In talking with other PC guys, I am starting to learn that the treatment that is recommended to you seems to depend on the doctors specialty. Urologists seem to prefer surgery (my option), ROs seem to recommend radiation, and MOs seem to always want to fill you up with chemo.
The U.S. National Cancer Institute maintains a list of "Designated Cancer Centers". These are research hospitals and clinics where NCI thinks the latest treatments and best informed oncologists can be found. They show a center at the University of Oklahoma that may be more convenient for you. Here is the listing:
You can also look at their recommendations in Kansas City, St. Louis, Memphis, and four of them in Texas.
M.D. Anderson is indeed world famous. You can't do better than there. But I think you can also do very, very well at any of these places.
As far as your castration resistance is concerned, the fact that you had a good initial response to your initial ADT is a good sign even though the resistance did not last for as long as we'd like. I think it's entirely possible that you'll get a couple of years on Xtandi - a much more powerful drug than the ones you've had so far.
It's important to visit a top notch medical oncologist who specializes in prostate cancer. There are so many kinds of cancer it's impossible for any doctor to keep up with all of them. When you call U of OK, or wherever, be sure to say that you want to see their top expert in prostate cancer - though even if he's unavailable and you see a young person, if he/she has a specialty in PCa, that's a good thing and there's an excellent chance that he'll discuss your case with the other specialists to get their ideas too. That's something that can happen in a hospital that isn't easy to do in a private practice.
One reason why you want to see a real specialist is that, even if you get a good and durable response to Xtandi, it will eventually fail. So you want someone to think about all the issues and be able to discuss combination therapies and follow on therapies with you - something your local urologist may not be able to do.
At your appointment, ask specifically about combination therapies and follow-ons. Bring a recorder (an app for your phone should work) and ask if it's okay to record the session. I can never remember exactly what anyone said at a medical appointment and it's useful to have the recording. Bringing your wife, child, or friend too can also be helpful so you've got two brains to ask questions and think about responses.
I know you're worried. We always are. It's the nature of life. But I'm hopeful that you'll do okay for years to come.
Thanks Alan, that is good advice. They actually have a University of Oklahoma medical center in Tulsa, so that might be an excellent place for me to start. Its also a coincidence that I am a big OU football fan.....Boomer Sooner!
I agree. Although docs are focused on improving our health, each has his bias. Urologists are surgeons; they were trained to think that surgery is THE answer. ROs thinks radiation is THE solution. It's what they do. It's how they make their money (sorry, one has to remember that we're paying for a service). My experience is that the MO can provide the broadest perspective and is most knowledgeable about the available treatments.
In order to be a successful doctor, you must be a successful businessman..When your PSA tested at 12 after surgery, your uro's job was done...Treating your cancer was now beyond his training and knowledge.
As your journey continues, it should be a Medical Oncologist who leads the way. You are correct, they all favor the specialty in which they were trained. The ones who work for a salary at a big hospital or research center generally give better advise as they have no financial interest in your choice if treatment. They get paid the same regardless.. It's up to YOU to separate the wheat from the chaff and make the choice that you feel will be the best for you...
Alan gave excellent advice as he always does in the 13 years that we have chatted. The only thing that I would add and it is because I am biased toward the route that I went. I looked toward academia. I wanted tge guys who taught others and stayed abreast of various trials and results across the world. The guys who spent their time in research. They all hold clinic for their “guinea pigs.” The people who spend their lives in geniturlogical research and lecture at major medical schools. In my case, this meant the Texas Medical Center in Houston. All of the Member hospitals and medical schools communicate and meet in regularity with a Prostate Cancer SPORE (Specialized Programs of Research Excellence) Committee who purpose it to coordinate and develop new treatment paradigms.
I found out about the academia side when I asked two different ROs in two different cities what they would do about my recently diagnosed metastatic PCa. Oh, I am not knocking all the other specialists, just reaching for more expertise.
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