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DiscussionProstate cancer treated with Leuprolide
Prostate Cancer | Last Active: Dec 1, 2022 | Replies (82)Comment receiving replies
Replies to "Thanks. Instead of surgery I had 43 days of radiation. All was well (from 2011 )..."
Follow the oncologist's advice. A rising PSA post treatment is indicative of a likelihood of treatment failure and should be taken seriously. There is a lot of disagreement among urologists and oncologists regarding the fairly recent changes in recommendations for routine PSA testing. Regardless of that, it is one animal when you have never been diagnosed with prostate cancer and another when you have been diagnosed with it and treated for it. A clean bone scan is not proof that you don't have a recurrence. It just means that not enough cells have amassed in bone to generate PSA. Follow the protocol as dictated by your oncologist, or not. If you don't, ask to know the risks.
THE ONLY OTHER THING I WOULD TELL YOU TO GO TO MAYO CLINIC ROCHESTER AND HAVE A SECOND OPINION.
I'm a little curious why you specified Mayo Rochester? It is the highest rated, by US News anyway but I have found Mayo AZ to be very good. Good advice in any case. Good for you for being so supportive,
In August of 2011 I had a PSA of over 25,000 (you read that right), I was jaundiced and in renal failure. I went to Mayo Rochester and am alive today because of their expertise. Specifically Dr. Kwon. As far as i know the Mayo Clinic Rochester is the only place in the U.S. where you can get the C-11 Choline PET scan (Google it) which is to my understanding the best diagnostic tool yet developed for the early detection and staging of prostate cancer. BTW I 've done it all. Leuprolide for 2+ years, Taxotere chemo, double nephrostomy for 8 months, 2 surgeries and monthly visits to Mayo for 2-1/2 years (fortunately I live just over an hour away). My PSA has been undetectable and my C-11 Choline PET scans clear for 3+ years now. IMHO there isn't anywhere else to go. All other Dr's I saw prior to going to Mayo evaluated my condition and determined all I needed was palliative care until the cancer killed me. Dr. Kwon always took a curative approach with a curative attitude and that is why I am here today.
Thanks for weighing in with that and glad to hear that you made it back from the edge. I know about Dr Kwon's work because I've had prostate cancer, a recurrence, and may be looking at another recurrence after salvage radiation. The breakthroughs in imaging are game changers for treatment of advanced prostate cancer and Dr Kwon is on the leading edge. As far as I know its not being used yet for initial diagnosis in someone without a history of prostate cancer but I could be wrong. Its used only in advanced cased like yours. That said, you confirm what I've heard about Rochester, about the best available, but Mayo Arizona is great too. They will have a Choline C11 PET scanner in 2011. Here's one of the talks by Dr Kwon available on youtube.
Thanks again and best of luck.
Great video. Besides being informative and an incredible innovator, Dr. Kwon has a healthy sense of humor. I don't like they way health professionals talk about "patient failed" on treatment though. I know what he means but it makes it sound like the patient didn't try hard enough rather than that the treatment failed the patient.
Here's more information about Choline C-11 PET scan http://mayocl.in/2a3sy8U
Dr Kwon has somewhat of a celebrity status these days so maybe its going to his head. The "patient failed" and like terminology is a little harsh but I just look at it as jargon between peers. I've never had a doctor tell me that I've failed a treatment. These advances in imaging are allowing the pursuit of a new area of treatment based on the idea of oligometastatic disease. This idea and treatment course extends the horizon of "curable" disease to beyond when a small number of metastases are found. This video explains it better than I ever could. Not a Mayo idea but the improved imaging makes it more plausible.
congratulations on your good decision of going to Mayo<br>
@donnelson, it is encouraging that you had five years of confidence that your prostate problem was manageable. I hope you also can be confident that your rising PSA reading last summer may not have been caused by a recurrence.
These discussions tend to refer to PSA tests as definitive for the disease and useful in tracking its progress over time. This is unfortunate. To put the PSA in proper perspective, here is a link to an education "tool" published by the American Urological Association last year: https://www.auanet.org/common/pdf/advocacy/grassroots-toolkits/DPCBooklet.pdf.
Note in particular this statement: "Most high PSA results are false positives (about 70 percent). Also, there is a small chance you may have prostate cancer even with a normal PSA test (about a 1-2 percent risk)."
This paper lists five major non-cancer causes of high PSA. I've had four of the five. They elevated my PSA repeatedly, but after nearly 20 years of up-and-down PSA readings, no cancer has been diagnosed.
When I passed my 70th birthday, my urologist stopped taking the PSA, in keeping with Urology's reigning principles of treatment. He said that, at my age (now 80), he wants me to avoid the false hopes and false fears that the PSA causes so often. Like your urologist and oncologist, he relied on other tests and examinations that (so far) confirmed his no-cancer diagnosis.
I sincerely hope that your bone and CT scans show positive results and that you won't have to worry about the risks of taking Lupron.
Martin