*UPDATE* 4 years ago my MO at Sparrow Hospital Cancer Center in Lansing, MI told me I had 2 years. Switched to the University of Michigan Rogel Cancer Center. In August 2018 had a PSMA Pet scan and found 2 small mets. Left hip and L3. Had 20 sessions of radiation and life was good. January 2020 PSA started doubling each month.Went from 0.02 to 36 in August. Had another PSMA Pet scan in August and nothing showed up. MO said that the molecular make up of the cancer might have changed. He ordered a CT scan and a Bone scan with the same results. He said the treatment plan was to wait and see. Can't treat what we can't see. Went to Mayo Clinic for second opinion. They did a Choline PET scan and found two uptakes. Right iliac lymph node and T3 region. They said lymph node could be biopsied. Sent scans to U of M and still waiting. Made an appointed to go back to Mayo and see Dr. Eugene Kwon. Excited!!
Can't treat what we can't see - Advanced Prostate...
Can't treat what we can't see
Where did you get your psma pet/ct scan?
Had two PSMA Pet scans. One in 2018 and one in 2020. Both at University of Michigan Rogel Cancer hospital.
We’re they part of a trial? Did you have to pay out of pocket?
Perhaps someone can tell us why the Choline scan showed more than the GA68 PSMA Pet/CT scan.
Because not all metastases express PSMA. Choline is much less sensitive, so there are undoubtedly many metastases that aren't showing up on either scan.
The first one had to be classified as a clinical trial for insurance purposes. Second one I was eligible for medicare.
Medicare paid for your GA68 PSMA Pet/CT scan?
And my supplemental which is Aetna
Thanks! This is news! A number of us have had to travel to UCLA and pay about $2800. I was told there that Medicare would not pay because scan was not yet approved by the FDA. I didn’t know Michigan offered this scan. It will be a much shorter trip for me the next time I need the scan.
I think it's part of a clinical trial there. Not available otherwise.
In fact, you have to treat what you can't see. Most metastases (and you probably have thousands of them) are too small to be picked up on even the most sensitive PET scans. I'm not against zapping the metastases that you can see, but it is important to have realistic expectations and not to cut back on systemic treatment (which, in fact, do treat what you can't see).
Thanks TA
So would you suggest chemo at this point, in this situation?
I don't know what his treatment history has been.
"and you probably have thousands of them" is a very sobering statement.
Yes, it is. I read an estimate that the smallest tumor that modern imaging can detect is 10,000,000 cells. It is the nature of metastatic cells (unlike cancer cells in the original prostate tumors) that those cells are capable of living in tissue reservoirs (where they create their own supportive environment) and traveling systemically in blood, lymph, and around nerves.
You apparently have PSMA negative tumor which the Choline PET/CT detected. I read that above a PSA value of 3 the sensitivity of a Choline PET/CT is comparable to a PSMA PET/CT. So with your PSA value of 36 the Choline PET/CT should provide a good result.
Do they allow one to purchase the scan, off trial?
U of Michigan does, but it's $3500 out of pocket and you still have to qualify. Friend's husband did it last Friday.
What constitutes qualifying?
I don't know what all of the qualifications are for the specific trial at U of Michigan, but for my husband's F-18 DCFPyL at Stanford, BCR had to be established, PSA had to be at least 1.0, required to have a bone scan (presuming to show no discernable metastases, but not sure about that). We did not receive a list of qualifiers from Stanford. They were addressed by telephone with the enrollment coordinator. Perhaps the same with 68 Ga at U of Michigan?
They treated what they couldnt see on me for 3 yrs with ADT. My PSA was still 11 after RP, but somehow nothing showed up on conventional scans. Firmagon and Eligard stopped working after about 20 months and they put me on Xtandi, which dropped PSA to 0. Currently on a vacation because the ADT drugs werent playing nice with my heart, but will have to start some form of treatment soon as PSA is rising quickly.
I spoke with a nurse Rogel Center. She will call back tomorrow once she gets the correct story.
SF, have you had a conversation with any MO about micro-metastasis? Metastatic cells which are too small to see. Unless treatment has changed in sixteen years, that treatment is systemic treatment; attacking all the mutant cells floating around in your vascular and lymphatic system looking for a place to land and colonize. Once they land and grow, your scans will light up like a Christmas tree.... whether the location is bone, lymph node, or organ. And possibly any combination of the three.
Systemic treatment meant to me, chemotherapy with ADT. Have you had a discussion on chemotherapy? Good luck in your treatment.
GD
I had no idea about micro-metastasis. Need to learn about that and CTC.
Can't treat what we can't see.
Exact wording by my urologist when we were taking about my "johnson"....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/11/2020 5:32 PM EST - God Bless our active and veteran military.
Update on previous post. I tried to keep that post short and in doing so I did not include current and previous treatment. Sorry, I now realize it is hard to get accurate feedback without providing full information.
11/2016 DX T3aNOMD 5+4=9
02/2017 RARP
10/2017 Lupron + Casodex
5/2018 Lupron + Zytiga + Prednesone
9/2018 completed XRT to prostate bed, left hip and L3
1/2020 - current PSA doubling every 3 months PSA 37.7
My update with Dr. Kwon at Mayo Clinic and the decision I have to make due to the results, Following is a part of my After Visit Summary:
Patient has failed 2nd generation androgen deprivation therapy, Zytiga and is no longer taking. He does continue on leuprolide. Patient should continue on leuprolide throughout duration of chemotherapy. Dr. Kwon like to see the patient back 1 to 2 weeks after his 3rd cycle for repeat evaluation. If PSA is not down trending or there is further advancement of metastatic disease on imaging, Dr. Kwon may recommend changing chemotherapy regimen. There is concern the patient may be developing neuroendocrine differentiation of his prostate carcinoma due to his Zytiga resistance.
Went to U of M to meet with my Oncologist for approval of Taxotere. He was adamant on not approving chemo at this time. Following is from the After Visit Summary:
We discussed a recommendation for enzalutamide at this point - while it may have a lower response rate compared to docetaxel, especially after progression on abiraterone therapy, the toxicity of docetaxel is significantly greater, especially in the context of the ongoing COVID pandemic. The benefits at this juncture from docetaxel are less clear as he is feeling well (we would certainly make him feel worse w/ docetaxel) and lacks radiographic evidence of any disease (thus, would likely not prolong his longevity currently if utilizing TAX 327 data which all had radiographic metastases). We did discuss it is very likely the risk/benefit ratio will change in the future and we would recommend docetaxel at some point - but not currently.
My two day visit to Mayo turned into five days and I had four different scans. All showing no new evidence of increasing disease, I only have PSA progression. Now I need to decide between Xtandi or chemo. HELP!
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