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Stubborn hubby! Update

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Posted 3/28/2017 6:35 PM (GMT 0)
Hubby has been getting HDT from the urologist who did his prostsectomy for about 5 years (high risk G9). His PSA started going up again last year (It is still low, but we don't like the trend and the doubling rate is about 6 months). Urologist said not to worry- 'it' was obviously 'back', but no need to do anything else for a year or two more. I was NOT comfortable waiting-- and thank goodness-- hubby wasn't either.

I finally got him to go to a medical oncologist a few weeks ago and he also referred him to a radiation oncologist. He really liked the medical oncologist and they have agreed that he will take over hubby's treatment from the urologist. He wanted hubby to see the RO to be sure he understood radiation options and for the RO to order appropriate scans (hubby has not had an MRI, CT or bone scan since right after surgery). The RO wants hubby to get a C11 scan- but they are only available at Mayo (I think only at the Minnesota location, but not certain). Hubby doesn't want to 'travel so far' (really not travel at all), so for now he is only going to get an MRI locally. At least we (the doc and I) got him that far. Crossing my fingers that he'll agree to getting the C11 scan. We really don't want to do pelvic bed radiation and doc says if mets show up outside the pelvic bed there is no real benefit to doing that anyway. Based on some symptoms, the MO and the RO (and I) think hubby probably has micro-mets. Thus 'our' desire for him to get the C11 scan.

Please cross your fingers too that he'll give in and get the C11 Scan.
Posted 3/28/2017 8:34 PM (GMT 0)
Other scans that might be (more?) appropriate

PSMA and the axumin F19 methodologies.

Both have been discussed on this Forum (and you participated in some of these threads).
Posted 3/28/2017 8:49 PM (GMT 0)
Yes, talked with doc about those. Auximin ruled out for now as his PSA is still too low for it yet. Doc felt C11 best now based on his symptoms. We'd have to travel for any of them so hubby not inclined to consider them at this time. I'm open to any of them that show micro mets. Doc was surprised how much I knew about the options. Being on this site really helps with my medical self- education (lol). Almost all his docs and nurses ask if I am/was a nurse or lab tech etc. I just refused to take things on face value and not know as much as I can about options, side effects, etc. Whether it is his condition/ care or my own or his Mom's or my Mom's.
Posted 3/28/2017 9:17 PM (GMT 0)
If his PSA is too low for the Axumin PET scan, then it is certainly too low for the C-11 Choline PET scan! If his PSA is only 0.02, there are no PET scans that can reliably detect mets. Your hubby is right to refuse this. There are no scans that show micrometastases - those can only show up under a microscope.

As far as I can tell from your signature, you decided to forgo salvage radiation in 2012 when cancerous lymph nodes were discovered. You decided to go with hormone therapy instead, which was a reasonable decision, especially at the time. Now you are possibly (you can't use PSADT for a uPSA increase from 0.01 to 0.02 - that's within normal fluctuations) seeing the first signs that the cancer is starting to become castration resistant. I understand you want to do something, but really there is little to be done right now but hold the course.
Posted 3/28/2017 9:31 PM (GMT 0)
Actually his PSA is now 0.04. Both oncologists are are concerned that not only is his PSA no longer 0.00 as it has been for over 3 years, but the doubling time is relatively short. The only reason it is not high enough for auxin is that the FDA says it should be 0.2. It is still very new and guidelines are still being established. RO says C11 will show mets at his PSA level. The only reason he is 'refusing' is going away from Charlotte. He promised that he is thinking about it because Mayo does lymph node removal if they show positive on a C11 scan. He is open to that (he showed at least 1 positive on a regular Scan 5 years ago.
We are reluctant to do pelvic floor salvage radiation due to scaring issues with his bladder already. Also he wasn't offered it after his surgery... only HDT.
Posted 3/28/2017 9:56 PM (GMT 0)
www.mayoclinic.org/tests-procedures/choline-c-11-pet-scan/details/mayo-clinic-approach/orc-20157001

Kwon saying PSA needs to be 2.0 to identify with C11.

That said, if HW has taught me anything, it's that, when it comes to PCa, one size does not fit all.

Maybe ask your RO if he's seen it show at your husband's PSA level with C11. Is that something he's actually seen..
Posted 3/28/2017 10:04 PM (GMT 0)
If your husband is having pain, the nice thing about conventional scanning is that it could show causes for pain that have nothing to do with pc
Posted 3/29/2017 12:29 AM (GMT 0)

worried said...
but the doubling time is relatively short.

There is no validation for a "doubling time" for uPSA tests. I don't think anyone has found an actionable use for uPSA while a man is taking ADT.

worried said...
The only reason it is not high enough for auxin is that the FDA says it should be 0.2 ...RO says C11 will show mets at his PSA level.

The reason the FDA says it should be over 0.2 is because it does not typically find metastases at a PSA that low. Yet it is among the best PET scans - much better, in fact, than C-11 Choline. C-11 Choline isn't at all reliable when the PSA is below 2.0. You can see the various PET scans and their PSA ranges in the table at this link:

/pcnrv.blogspot.com/2016/12/pet-scans-for-prostate-cancer.html

At his current PSA, with his mets all shrunken by hormone therapy, you would be wasting your time and money by getting any PET scan. If he is given a vacation from hormone therapy they might show up, but if CRPC is starting, that could be risky, and for little potential benefit.

The odds that the cancer is still only in his pelvic LNs is very low now that it is 5 years after it was first discovered there. With ePLND, there is risk of lymphocele and lymphedema. On the other hand, there may be benefit to starting second line hormonal therapy sooner (Zytiga or Xtandi).
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