First I want to apologize for such a long post, but am hoping to give all info. needed for your help.
I have posted a couple of questions before and appreciated your help; again we would VERY much appreciate any clarifications, opinions, insight from you now…also any corrections to what “I think” that could be wrong
History husband is 77 (will be 78 in Aug 2021) other than PCa, is healthy—found out he does have osteoporosis in 1 hip and osteopenia in other (concerning for ADT)
PSA: 3.77 in 9/2019 -- had been in high 2’s to mid 3’s forever 5.15 in 9/2020— uro suggested 3 mo. redo 8.18 in 12/2020—uro advised biopsy (done 1/11/21) 10.43 on 1/28/21 (doubled in 4 months) before Degarelix injection. T=296 2.73 on 2/17/21 T = 41.3 2.52 on 2/25/21 T = 40 1.43 on 4/1/21 0.54 on 5/20/21 T = 41.3
diagnosed by biopsy 1/11/21 with PCa; 1-Original pathology report: GL9: 4+5=9 and 5=4=9, grade 5. Six/12 cores, all left malignant; all right benign. Adenocarcinom w/ intraductal spread, with each core discontinuously involving 50% -70%
2-MDA review of slides: GL9: 4+5=9 and 5=4=9, grade 5. Six/12 cores, all left malignant; all right benign Adenocarcinoma, with each core discontinuously involving 50% -70%
3-Pathologist review for Proton Center graded it 4 + 4=8 GL8 and Grade Grade 4 Adenocarcinoma with Cribriform pattern 4
3-T MRI noted Pi-Rads 4
Started on ADT 1/28: Jan-Degarelix 1 mo. Feb-Eligard 3 mo. May- Eligard 3 mo. Aug- will have 3 mo. Eligard Is tolerating ADT well so far but has had muscle loss and some brain fog which adds to concerns for also having more bone loss with ADT
He has had CT, PET, Axumin PET, and two 3-T MRI's; all show 3-4 “suspicious" lymph nodes (external and internal iliac) which 1 doc says are round, not elliptical so that's what makes them suspicious. NOT biopsied and NOT 1 radiologist will commit to calling them malignant or benign--all say suspicious, so they were treated as positive. bone scan with no bone malignancy was seen.
What his PCa is being called and the confusion!
1-MD Anderson URO oncology surgeon calls his PCa: advanced, (???) very aggressive (GL9 and doubling in 4 mo.) metastatic (???—he calls nodes mets) extremely high risk (primary Gleason pattern 5 and more than 4 cores with grade 4 or 5). stage IVA
2-MDA MO calls it metastatic and wants to do chemo
3-Proton Radiologist calls it IVA, N1, M0
4-2nd MO noted T1c, N1, M0, says NOT metastatic but recommends Zytiga + prednisone
Other terms used by other docs call it "regional", but do not say metastatic.
Hubby finished 39 Pencil Beam Proton sessions with boost almost 4 weeks ago. In addition to prostate, ALL pelvic nodes targeted for 27 sessions and “suspicious” targeted an additional 5 (?) sessions; only prostate treated the last 7 days.
now for my observations and questions:
1-I thought “advanced” meant cancer had spread to bones or distant sites or had recurred; neither is true for Jeff so why calling it advanced? It appears EARLY STAGE to me and NOT advanced
2-I thought chemo was only used for metastatic which Jeff does not have, so why would it be recommended? Agree with Tall Allen that chemo would be of little benefit
3-I thought Zytiga was for mCRPC and nmCRPC and for men with hormone-naïve prostate cancer regardless of metastatic disease status. Jeff does not have hormone-naïve nor CRPC yet—is responding to ADT so far. Would Zytiga benefit him when he doesn’t fall into these categories?
4-I agree with you who call his PCa Regional as opposed to metastatic
5-appears it was caught “early” because his PSA had just started to rise and was starting to take off but stopped by ADT. 10.43 was highest it ever got
6-IF he doesn’t have mets, and is regional, why is it called IVA?
7- AM I being unreasonable when I ask for genetic and genome (bio-marker) testing to be done? I asked for it before he started ADT—not done; I have repeatedly asked for it to be done and it’s ignored saying no benefit until he has metastases.
a-“germline testing is recommended for prostate cancer and with any of the following: …..VERY HIGH RISK, REGIONAL, AGGRESSIVE…”
b-“Genomic testing looks at the DNA of your tumor can find the different types of mutations that may be in your tumor, whether they were inherited or acquired and how they influence the behavior of the tumor, including how rapidly it is likely to grow and spread.”
c-PSMA bio-marker testing??
8-I have asked about use of low-dose Estrogen patches to offset the brain fog, possible bone loss, and muscle loss—response has been underwhelming. SO FAR Jeff doesn’t have hot flashes so the theory is not to use Estrogen…
9- I hate that everything to do with PCa seems to be re-active—“when it comes back”; we’d rather be pro-active to try and prevent it from coming back, but not sure anything really is other than the ADT.
10- He can get a PSMA imaging—the new MSK one—but advised to wait at least 3 months after the Proton ended before doing that—sounds reasonable a-Would this be a good pro-active move? To see IF there are any lurking cancer cells not shown on other imaging and perhaps zap them before they cause trouble?b-Is the PSMA targeted therapy that’s waiting to be approved going to be able to eliminate these cancer cells early? Is it worth waiting for?
THANK all of you for your help and continued prayers for you and for beating this thing