Please reply with your helpful hints and suggestions for 1. figuring out when to do PSA tests and scans and new biopsies and 2. maintaining your health and happiness with diet, exercise or anything else that is helpful for you.
It's OK to re-post replies you previously made. I want this to be comprehensive. I think it will be great to have a full community response to this...I'll pin the post as a resource for us all. Thanks!
I think the proper intervals for biopsies remain a mystery. I started out in 2010 with annual biopsies. I had a Gleason 6 in a single core in late 2010 abd it has never been seen again. That was before I realized the risks of biopsies, such as sepsis, and how useless blind biopsies were (some experts compare them to coin tosses). Eventually, my urologist felt comfortable with my prostate and how it worked, even as it reached a PSA of nearly 9. He switched me to biopsies every three years. I have had one biopsy in the last five years and am due for an evaluation next month. Dr. Klotz in Toronto is now recommending biopsies every four to five years for low-risk patients. Some docs in the US suggest these intervals are based on the Canadian single-payor system trying to conserve resources. Others say long biopsy vacations wouldn't fly in the US because urologists would fear malpractice suits if they skipped biopsies and advanced cancers showed up in the interval. If I have another PSA of high 4 or lower, I'd like to avoid the biopsy. I might consider a high-rez ultrasound.
Hi Darryl: I am on AS since diagnosis at age 79 - now 83. GS = 3+3 = 6(1 of 18 cores). Done at age 79. Last biopsy 1 1/2 years ago 18 cores all negative. Having PSA every 6 months and has been running a steady 1.0. This past Nov. Dr. had me take a contrasted MRI. No lesions detected. I am in quandrery as to best way to keep track of the disease. I cannot make any recommendations other than keep doing the PSA - that's what I rely on at this time but in a local support group where almost are in the advanced stage - scarry!!
Bud Armstrong - Sun City West, AZ
You raise an interesting question, Bud. I wonder once you a diagnosed with low-risk prostate cancer if you are on the PSA, biopsy, mpMRI train until you die. Colonoscopies are recommended until your late 70s. Is there a cut-off for low-risk prostate cancer? As to support groups...I find that they can be dominated by men with advanced PCa. Are you aware of a couple live virtual groups dedicated to low-risk PCa?
Bud, you also mention a PSA of 1. That seems very low. Have you undergone aggressive treatment such as chemo or radiation?
I have not seen any data on any definite recommended cutoff age for low risk cancer. But this forum is an excellent source of information that I will certainly keep abreast as studies are reported. To answer your question regards the PSA 1.0, I have not taken any meds.. I have made more concerted effort toward exercise and modified diet(this one is more difficult). Your interest and thought are very much appreciated - THANKS!
Oh my gosh! Yes my local support group also is made up of mostly men in advanced stages. I felt like my being there was a slap in the face to them. I just need to know AS is OK and that have prostate cancer is not the end if the Gleason and other factors are low and monitored. I do not care who you are, hearing you have cancer is sickening.
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I am 79 and have been on AS for 4 years. I assume that most,if not all , of us in this age area have at least one other relatively serious medical problem. I know i do. That said, at some age point I dont care a lot what the PSA,DRE,MRI or biopsy slides show because ,according to the Sloan Kettering life expectancy questionnaire, the chance of something other than Prostate Cancer getting me is very very high compared to PC. I want to live as long as i possibly can if it is in a state where i have some quality of life. I know each of us defines what constitutes quality of live differently. Just another of many reasons that there is no one best path of AS, Treatment etc etc for PC patients. My PSA has now gone over 12%. I just had a targeted fusion biopsy on July 3rd because of conflicting opinions in re my Dec 2018 3TMRI. Depending on what Johns Hopkins 2nd op folks say i will make a long term decision about my future path, but barring a major negative change in my key numbers, especially Cancer stage and whether ot not the disease is still contained within my prostate, I will probably stay on some sort of spread out AS and forego treatment even though my Urol finally recommended i start treatment in February of this year....i should say my EX Urol , without my ever having had any but 2 blind biopsies 4 and 3 years ago.
3+3=6..blind biopsy..2015...3+4=7..blind biopsy 2016..Johns Hopkins 2nd op adjusted it back to 3+3=6 where it has been ever since. PSA started at 6.47 in July 2015 and gradually increased to 12.95% in May of this year.
On Active Surveillance since August 2017
Anyone here on Active Surveillance?
WHAT ARE THE A.S. BEST PRACTICES?
BALANCE and BOOKS
