Prostate cancer treated with Leuprolide

Posted by donnelson @donnelson, May 25, 2016

I had 43 days of prostate cancer radiation about 5-6 years ago. My PSA becgan to rise in summer of 2014. Suddenly it went from 5 to 20 in 4 months, only to drop a bit the next week. My doctor suggets Leuprolide which is administered every 6 months by a shot. I’ve read many bad side affects(swelling of feel and legs, visual changes, hot flashes and generally lower testrosterone levels). Have others had this problem? I’m wondering if I should wait a month and have the PSA drawn again?.

@donnelson

There is some question about Leuprolide ande Lupron. I’m assuming that they are the same? My urologist has agreed to another psa to see whether there has been a change. since it shot up so quickly, I’m wondering if it is a fluke. He agreed that there is a major lifestyle change that happens with this drug.. I’m wondering if there is an alternative? Also once he once told me that psas at 50 and more were not uncommon??

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There is the idea of ‘Watchful Waiting’ but it sounds like with a rising PSA treatment is advisable. But at the end of the day its your call after you get the info. I encourage you to check some of those support groups. Keep us in the loop.

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@donnelson

There is some question about Leuprolide ande Lupron. I’m assuming that they are the same? My urologist has agreed to another psa to see whether there has been a change. since it shot up so quickly, I’m wondering if it is a fluke. He agreed that there is a major lifestyle change that happens with this drug.. I’m wondering if there is an alternative? Also once he once told me that psas at 50 and more were not uncommon??

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HAVE YOU HAD A PROSTATECTOMY, FROM MY HUSBANDS EXPERIENCE THAT HE HAD A VERY AGRESSIVE PROSTATE CANCER MY SUGGESTION GO WITH LUPRON AND SEE IF YOUR PSA LOWERS. MY HUSBANDS IS 0.07. THIS MEANS UNDETECTEBLE. WISH YOU ALL THE LUCK . FLOR

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Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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@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

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@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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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.

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Hi all, Incredibly informative conversation happening here, and perhaps somewhat confusing with regards to PSA guidelines.

@predictable, I appreciate the American Urological Association reference you provided. It is very well articulated in plain language. However, this information is specific to prostate cancer screening, not PSA reading with respect to monitoring for recurrence.

Here are some references about post-treatment monitoring from Harvard Medical School:

– Post-treatment monitoring http://www.harvardprostateknowledge.org/post-treatment-monitoring
– How to handle a relapse after treatment for prostate cancer http://www.harvardprostateknowledge.org/how-to-handle-a-relapse-after-treatment-for-prostate-cancer

I’d like to quote the opening paragraphs of the first article:
“Today the prostate-specific antigen (PSA) screening test is often the first indicator that cancer may be present in the prostate gland. The usefulness of PSA testing, however, is not confined to the initial screening and decision making. After treatment, PSA monitoring is the primary tool for measuring treatment success and for detecting early signs of cancer recurrence.

The PSA value and its velocity (its rate of change over time) are valuable tools for assessing options for further treatment. You will continue to have regular PSA tests throughout life as an early-warning system to detect residual or recurrent disease. Let’s not forget that a significant percentage of men with a normal PSA will have an abnormal digital rectal exam (DRE), and both should be done!”

@donnelson it sounds like your oncologist is keeping a close eye on things. As a woman, I can tell you hot flashes are bothersome, but manageable. Oops did I just give away my age?

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COLLEN THANKS FOR YOUR INFORMATION. WE JUST LEARNED THAT OUR SON HAD A HIGH PSA 4.6 HE IS 43 AND HE HAS MEDICATION FOR PROSTATITIS. AFTER THAT HE WILL NEED ANOTHER PSA TO SEE IF THE NUMBER DECREASED.. WE HAVE ALREADY BEEN IN TOUCH WITH MAYO CLINIC DRS. AND WILL TAKE THE DECISION OF HAVING A BIOPSI AS SOON AS POSIBLE AT MAYO.

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I FORGOT TO SUGGEST TO YOU TO READ THIS BOOK PROSTATE A GUIDE FOR MEN AND THE WOMEN WHO LOVE THEM. BY PATRICK WALSH MD.

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@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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THE ONLY OTHER THING I WOULD TELL YOU TO GO TO MAYO CLINIC ROCHESTER AND HAVE A SECOND OPINION.

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@flor

I FORGOT TO SUGGEST TO YOU TO READ THIS BOOK PROSTATE A GUIDE FOR MEN AND THE WOMEN WHO LOVE THEM. BY PATRICK WALSH MD.

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You might also consider “An Introduction to Prostate Cancer”, a publication of the Prostate Cancer Foundation. Also from them: “Nutrition, Exercise and Prostate Cancer” and “Report to the Nation on Prostate Cancer: A guide for men and their families” Abbott has a a book called 100 Q&As about Prostate Cancer by Pamela Ellsworth, MD

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@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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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,

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@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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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.

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