Hello everyone! I’m putting this question out there based on some posts from others that I’ve been reading. Several have indicated that their doctor has ordered a scan (MRI, CT, PET) at PSA levels way less than .2. My PSA has now reached .15 and I’m getting more worried. Im being told that the PSMA scan is the only hope for seeing lesions, but I must wait until my PSA reaches at least .3 and preferably .5. Also, I’ve been advised that there is a limit of 2 PSMA scans per lifetime, but I don’t know why.
Am I wrong in not insisting on some type of scan? My next move would be salvage radiation, but it would sure be nice to see if anything is going on down there. Also, does anyone know why there is a limit of 2 PSMA scans per lifetime?
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billd9946
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I’ve just been given a date for a PSMA scan in Germany for 28 January. My PSA at start of December was 0.063 up from 0.05 and 0.035. From what I understand the scan can be successful from .05 but there are no guarantees. The success rate goes up with the PSA levels so with a PSA of .2 there is generally a better chance of finding the Cancer than lower levels. Never heard of max of two.
Hello Billd9946, In 2007 I was diagnosed and my PSA was 0.00 after one year with 42 radiations. My blood tests in 2011 showed increases in Alkaline Phosphatase and just to be sure my oncologist recommended MRI and CT scans. Well my cancer had metastasized to my bones, so I started Lupron injections every 3 months and I had 30 more radiations. I stayed on Lupron for 6 1/2 years and stopped it after April 2018. I have no signs of cancer at this time and my life has changed again. I was on Medicare and the tests were about $30.00 each. I am 73 years old now and I wish you well in your decisions.
Thank you, Jim. I honestly don’t know how you managed so many years on hormone therapy, but it would seem it paid off! Great to read the good news and congratulations to you. Here’s to many more years, cancer-free!!
Hi again, for the first 18 months of Lupron I had a lot of side effects, but then after that the side effects kind of went away. For example hot flashes were just every 2 weeks, I became used to NOT lusting over every guy, but rather I got to know men and women for who they were, not what I could get from them. I have other diseases like diabetes, heart disease and bad kidneys. So I changed my diet for those diseases. My heart doctor put me on two blood thinners and that is a real pain. So just keeping up with everything keeps me busy and yet I have time to do whatever I want. They gave me 5 years to live in 2007 but here I am! Every 7 years cells in your body die off and the basil cells grow new ones. So I stayed on Lupron for 6 1/2 years hoping the cancer cells would die off of old age. I have bone metastases. My oncologist explained to me that the cancer cells attach to the bone, sink into the bone, leave a pock mark on the outside, and are entrapped there forever. As long as there is no testosterone these cells can not multiply. They weaken the bone over time and I was given 3 shots of Xgeva (osteoporosis drug) one every 6 months in year 3. I'm not into sex right now, I tried porno last week and nothing happened, but I did have an erection a couple of weeks ago. My T count is 11 (360 is normal), and we will work on that in June when I see my oncologist again. I did not have surgery. I don't know if you need any of this information, but so I am just saying anything about this subject. All I can suggest is that you just keep truckin'.
You've definitely stayed the course and it appears to have paid off. I had a radical prostatectomy in July 2015 and at PSA .04 started Firmagon with the intention of hormone therapy for 2 years with salvage radiation. I had such a bad reaction that I sought the opinion of another oncologist. He recommended I hold off on everything until PSA reached .2. My most recent test showed .15, so it appears I'm heading in the direction of at least radiation... I just don't know about adding hormone therapy. Your situation really does give cause for hope and I really appreciate you sharing with me. I'll see how things are looking again in March. Keep up the good fight!!!
Health unlocked has a site called "Active Surveillance- Prostate Cancer" where men are deciding whether or not to start therapy. I use it because cancer can come back and I just keep truckin'.
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Interesting story from the oncologist, and also my experience with Trimix.
Recently Diagnosed. Overwhelmed. 
Up next: Hormone therapy and radiation
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