Well, I had feared this was coming, and yesterday, it did. My PSA hit the .2 mark. I admit I've been lucky - RP in 2002, with no seminal vesicle involvement; no lymph node involvement, and negative margins. I was stage 3, due to the extraprostatic extension... Gleason 4+3, though. For 12 years, my PSA stayed "less than 0.04." After a while, you begin to think you might get away with it, so to speak. But, three years ago, my PSA began to rise and bounce... 0.6; 0.8; .12 to .18, mostly around .15...
So, the decision tree indicates radiation.... 75% chance of "success." Holding off for a few weeks, to make all arrangements, etc.
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spinosa
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So sorry about the rise. The good news is that, while 0.2, it is still relatively low. You are correct in that you need to think of treatment options.
It would be nice to know where the cancer is located. At a 0.2 level I do not think that regular CT/bone scans could pick up the cancer. But there is a new PET test which is a lot more sensitive called Axumin PET. Here is some information
While it has been approved by Medicare please be careful if you have private insurance. I thought I was covered. Then six months later a get a bill for $11,000.
Thanks a million - the new urologist I met with yesterday (the guy I had for fourteen years just up and left town...weird), says nothing in our area will be effective in reading/locating where "it" is... which has been my complaint about radiation - it's a guess, shooting in the dark - radiological onco and my urologist all say, well - since your surgical results were "X," and your history has been thus, MOST LIKELY we can cure you - one rad guy said he WOULD cure me.... ahhhh....makes me shy away. A lot of guessing... at 64, I'd like to make it to 80 - but, since I've been on this board reading postings, I realize how lucky I've been...already. I WILL ask about the new PET scan.
If the recurrence is out of the prostate bed and in the nodes or bones, then blind radiation to the prostate bed will not cure the cancer, but may result in significant long term side effects to urinary and bowel function. ‘Cure’ rate for salvage radiation is 40-50%, chance of permanent side effects is 10%, per a radiation oncologist and confirmed by other specialists.
It’s also important to know your PSADT, it may be a very slow rise and some years before you have to undergo treatment.
Don’t jump into anything too fast, do your own research, there’s no right answer, just the one you can live with. Best wishes on your journey. Susan (helping hubby through his).
Hello 'spinosa', Perhaps a brief account of my journey with PCa may be helpful and put your mind 'somewhat' at ease. I have previously posted a more comprehensive case history if you are interested. However, it seems that the more I read about PCa, the more confused I become, so by no means are my statements suggestions. There are many folks on this forum with far more knowledge of the subject than I can ever conceive of having. I have a history quite similar to yours (robotic RP in 2004, 4+4 Gleason, T3a staging) with the exception that my PSA has been rising steadily over the past 13 years. A few years ago when my PSA reached 0.5, I became a bit concerned and consulted a radiation oncologist who recommended seven weeks of radiation to the prostate bed area. My surgeon at UCI and another urologist suggested waiting since as you mentioned, "It's a guess, shooting in the dark”. I am very happy that I listened to them since the 68Ga-PSMA-PET/CT scan that I had performed in May of 2017 at Peter MacCallum Cancer Center in Melbourne, AU (when my PSA reached the 1.1 level) found metastasis only in sacral lymph nodes. I had them removed robotically at UCI in August and my latest PSA was 0.57. Unfortunately the surgery didn't 'cure' the problem since 'soft tissue' involvement was also found in the post-op path report, however, I am quite pleased with the results since I am hoping that the surgery will delay ADT for sometime. My surgeon is very conservative and has not suggested any adjuvant therapy since he is not convinced that early intervention will be of benefit in my case and is a QOL champion. I think that Dr. Myers may agree with this thinking. Prior to my decision to have the 68Ga scan performed I did a considerable amount of searching on scans in hopes of finding the best option.
Here are a few things that my researching uncovered even though there were many articles that had conflicting opinions:
The C-11 Choline PET scan at Mayo Clinic requires a minimum PSA of about 1.5-1.7 to be considered 'valid'.
The 68Ga-PSMA-PET/CT scan was considered valid at PSA levels >0.7. At the time of my research it was available at UCLA for a cost of $2650...not covered by Medicare. I paid $600/US in Melbourne, AU.
The Axumin or F-18 scan/s (and I'm still not sure if they are one and the same...perhaps someone here can clarify this?) is/are also valid at PSA levels > 0.7. It was approved and available at Loyola University Medical Center in Chicago; however, I was told that the cost was about $10,000 and my 'out of pocket cost' with Medicare was unknown. This is a quote from Loyola's website: "The drug is a synthetic amino acid analog called Axumin™ (fluciclovine F-18). Attached to the amino acid is a radioactive tracer, fluorine-18. After Axumin is injected into the patient, the drug is taken up by prostate cancer cells. The fluorine-18 emits a small amount of energy in the form of gamma rays. The PET/CT scanner detects this energy, and a computer produces a detailed image.”
A very prominent, experienced and candid doctor at Loyola told me that the ‘jury was still out’ regarding comparisons of the 68Ga and F-18 scans.
I was quoted about $1,450/US at Peter MacCallum in Melbourne for the F-18 scan. While I was communicating with doctors at Peter MacCallum, one of the doctors sent this message to me: "With a PSA of 1.0 at 13 years my advice would, however, be to save your money and monitor the PSA for a bit longer unless this rise is very recent off a low base.”
Axumin PET/CTs are now more available in the US, as I had one in Atlanta in 9/17, fully covered by Medicare. But, as pointed out, there is a minimum PSA required for anything to be found.
It puts you in the unusual position of wanting your PSA to rise!
If you don't mind me asking, can you please tell me what your 'out of pocket' expense was with the Axumin scan and did the scan find anything? I was told by the folks at Loyola that my portion would be at least $1,000.
As I am on Medicare with AARP/United supplemental, my out of pocket was $0.
PSA was 10+, so scan found some positive lymph nodes, but most importantly, it indicated suspicious activity in liver. Subsequent liver MRI confirmed numerous liver mets. Without Axumin scan, we would not have known about most serious liver mets.
Thank you for the expeditious reply. I'm sorry to hear that the scan found more than you had hoped for. However, from what you have written, it appears that the "Subsequent liver MRI" more accurately identified the "suspicious activity" than the Axumin scan did. Does this mean that today's MRI scans are as valid as the PSMAs? Also, are you or anyone on this forum familiar with newer MRIs that can eliminate the traditional invasive needle biopsies for diagnosing PCa? A friend of mine has suspicious 'total and free %' PSA numbers and has been told that an MRI can diagnose whether or not he has PCa.
Hopefully your team will get your condition under control. "Never give in."
My understanding is that PCa in liver does not necessarily generate PSA, so a MRI with a very specific contrast agent is used to check for liver mets.
As for MRI and PCa biopsy, several folks in US are providing 3T MRI guided biopsies in place of the random sticks into your prostate gland. Dr. Joe Busch in Chattanooga does this and several guys from my local support group have seen him.
This thread has some really great advice. My story is that I am a Gleason 4+3 that behaves more like a 6. Open surgery 7/2000, salvage radiation 11/2003. I waited for radiation treatments each day with two other guys. All three of us failed. It wasn't until later that I realized that this treatment is a complete shot in the dark. It is based on the assumption that PCa is most likely to reappear in the prostate bed, not on evidence. What I didn't know was that this decision would also limit my options in the future due to how much and where my body would be able to tolerate future radiation treatments. The same area cannot be radiated twice, and there is a possibility that the additional radiation could completely shut down my immune system. It turns out that I needed to radiate my lymph nodes 7 years later. Fortunately, they were able to avoid the previously radiated area, and I suspect like most men, my immune system emerged in good shape. Once again while waiting each day, I became friendly with another patient. He passed away 5 months after completing his radiation treatments because his immune system shut down, and he was no longer responding to any treatment. Imaging was no where near as sophisticated when I did salvage as it is now. Knowing what I know now, if it was available then, I definitely would have taken advantage of it. Also, I have been left with severe radiation scarring and have serious bleeding episodes. It sounds as if, like me, you have a mild 7. If so, you can afford to take some time making this decision.
Post surgery my PSA was 3.3 prostate bed lymph nodes were all clear and traditional bone and PET scan were clear.
Got a referral to CHS Charité – Healthcare Services GmbH
in Berlin. I had a Ga-58 PSMA PET-CT scan that identified x3 small lymph node tumors in pelvic region. Now get 35 days of radiation and hoping that deals with the. Plan to get another PSMA scan 4 months after completion of radiation to make sure there are no additional mets.
Cost was 3500 Euros plus my airfare and hotel but great staff at Charite and got about 2hrs with their most two senior oncologists who were very helpful.
Let me know if anyone wants more details on Charite place place to stay and things to do, happy to share.
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