So after a year on HT I was able to track down one of my original MOs from last year, and after reviewing my status said, "my opinion is that imaging needs to supplement this treatment periodically because small cell cancer can be developing under your PSA radar". I took this back to my primary MO at Hopkins and he tells me SOC at JH, which is also NCCN standard, does not call for this and he cannot order it, and it is likely not covered by my insurance. Fortunately, my local MO is willing to do it and found my insurance (Medicare+AARP) does cover it.
PSA is not detectable during this past year and unlikely, but I do want this imaging done! Comments welcome.
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jackwfrench
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Thanks for sharing this excellent question Jack! I'm also wondering about this.
There seems to be a kind of fatalism, or passivity among my doctors, where the so-called inevitability of PCa resistance is concerned. And a low interest in catching any evolution to a post-resistant form of cancer, such as neuroendocrine or small cell or AR negative etc.
My understanding is that if you catch these sorts of things early then the chances of a better outcome are increased.
Maybe there are policy decisions behind the scenes? Sort of, "you had a few extra years, good for you, and good for our fantastic stats on doublet and triplet therapy, but that's it for you. We're not going to make any heroic efforts after the wonderful treatment you've already received." Stated more politely in public of course. And behind closed doors, expressed in terms of healthcare economics and policy. I apologize for these cynical and ungrateful thoughts.
I look forward to, on behalf of a lot of people I'm sure, learning about how you are able to navigate the healthcare system at Johns Hopkins in favor of more imaging!
The quickest way to interest a doctor in a scan he/she would not order, and that's to have it run by a different doctor. Then the interest arises.
I think some of those decisions in the USA are driven by the individual arrangements each clinic has with various insurance companies. Such detailed arrangements can vary widely from clinic to clinic, insurance carrier by insurance carrier.
As has been pointed out on this forum many times, when you have metastases there will be many metastases that you cannot see regardless of the imaging method. They are just too small. And there may be large numbers of them too.
If one is unfortunate enough to have one's metastatic prostate cancer evolve into some other kind of cancer, I would think that by the time you can see anything it's probably pretty late in the game. All that molecular biochemistry is well underway.
I don't know what kind of tests are available to detect neuroendocrine cancer, small cell cancer or AR negative cancers - are there blood tests for markers?
Yes I have to do that - if he thinks overall cancer monitoring visibility is increased with imaging periodically then I am proceeding - I have it scheduled for late October. I believe this MO is sharp enough to have brought up neuroendocrine markers from blood if it existed and was useful beyond his suggested imaging; but I will ask him.
I asked my MO about getting a PSMA done which I have never had. I was told unless my PSA numbers start to escalate, that it was not yet necessary. Also, because my metastasis is microscopic, there would be nothing showing.
I had PSMA PET scan when my PSA hit 0.2 which was not definitive in its findings. This was followed by 4 more PSMA scans over the next 12 months. My PSA was 0.33 at 5th PSMA. Still nothing definitive.
Finally 3 years after I was 0.2 when my PSA hit 0.66 my 6th PSMA was able to lock down two spots on my pelvis, which I have just had radiation on. I am now 9 years post RALP.
"This was followed by 4 more PSMA scans over the next 12 months."
I had 2 PSMA scans 9 months apart, both were for persistent PSA rises after treatment, and both were invaluable in showing changing mets. Medicare will not reimburse the hospital for the second scan. Maybe because it was too many scans in 12 months?
The issue is between the hospital and Medicare. The hospital resubmitted the claim, and Medicare again denied it. Medicare's MSN said : "Note A: Info provided does not support need... Note C: Medicare does not pay for this item." It is a mystery to me, and is not over. I have Medicare with a Supplement, which does not pay unless Medicare pays first.
There's imaging and then there's imaging. MRI has no radiation. CT scans have lots of radiation. If one's life expectancy is 18 months then we don't worry about large doses of radiation for imaging.
But if one manages to achieve more years with double electric therapy, I won't say a chronic status, then routine large doses of radiation for imaging becomes a concern. Especially if we want to have more frequent assessments, the better to avoid progression surprises.
I need to start keeping a diary and to look back and see what I've already had by way of radiation. I guess it's a nice problem to have.
My interest here is only to compare radiation associated with diagnostic imaging, not radiation as therapy.
From the American Cancer society:
1. A single chest x-ray exposes the patient to about 0.1 mSv. This is about the same amount of radiation people are exposed to naturally over the course of about 10 days.
2. A lower GI series using x-rays of the large intestine exposes a person to about 8 mSv, or about the amount expected over about 3 years.
3. A CT scan of the abdomen (belly) and pelvis exposes a person to about 10 mSv.
4. A PET/CT exposes you to about 25 mSv of radiation. This is equal to about 8 years of average background radiation exposure.
On this basis the whole-body CT scans I'm getting are equivalent to about 250 chest x-rays.
Medicare and many members of the medical community don't under the mental balance between the resolve to do anything possible to defeat PCa and a need to find peace by accepting a break in the walk toward that "good night." This thinking is not a death wish, but it is a wish to move away from the years of test anxiety, the changes surgery and radiation inflict on the body, and the damning effects of ADT. Sometimes it feels like a deal with the Devil to win a few more years of life. PSMA scans without a elevated psa level increase stress and may decrease quality of life. PET to monitor for changes in cancer into a possibility even more deadly form, may not be as proactive as some doctors think. There is certainly valid and reasonable thinking to question the ideas I have presented. Everyone should do what they can to avoid the pain of late stage PCa. My own opinion is subject to change on any given day, but sometimes the medical war to defeat this cancer can be as destructive as the disease itself.
I had multiple scans in a short time (3 months bone and CT) because my MO knew I had metastatic disease in my bones and wanted to be sure the cancer wasn't progressing without a increase in PSA. He feels good that PSA is still a good marker for me for now but thinks I should still have bone and CT scans more than once a year. Add that radiation to what I just got from my dentist and oral surgeon for a root canal and I am getting a lot in my opinion.
Do we have data that assesses the risk of CTs? I get frequent scans along with PSA/bloodwork, etc. to keep an eye on my disease (currently and thankfully in remission). Some of the variants (neuroendocrine, small cell, etc.) need to be caught super early to have a change at survival, so I guess it's one risk against another? Which is lower?
The more I read about this it seems that the presence of neuroendocrine/small cell is just a heads up on the coming of resistance. Perhaps the next drug would be introduced sooner? Not sure, but this is probably why my Hopkins MO seemed unworried about doing it now for me as I am just one year into HT with nadir.
Curious who your MO at Hopkins is. I am being treated at Hopkins as well. Had triplet therapy 2 years ago for oligo and my PSA remains undetectable off all medication (last dose of Lupron was 7/23).
I have been very impressed with the care I have received at Johns Hopkins.
Since you are remaining Hormone Sensitive with an undetectable PSA (congratulations), then it is not growing significantly and a PSMA PET scan would not be expected to show anything. So it would argue for less frequent scanning by PSMA. However, if you are looking for possible non PSA-excreting mets (neuroendocrine/small cell) then you need a different scan as these will also not express PSMA, I believe. So another scan such as FDG PET (Fluoro-Deoxy-Glucose) might be appropriate. Would discuss with a smart open-minded MO.
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SIGNIFICANT METS PROGRESSION DESPITE LOW PSA, LOW ALP, LOW CALCIUM WITH LUPRON/ZYTIGA TREATMENT
PSA Fluctuation and Zytiga
No Longer Undetectable
PSA low and Cancer Spreading 
