Hi Surf,
The only thing that makes sense to me is that the people you are talking to at UCSF are looking at your chart and seeing it refer to an intermediate risk unfavorable patient due to the pathology report results not being incorporated into whatever screen/data they are looking at. If that were the case, then their protocol IS following NCCN Guidelines (although I still feel it is patetic to deny you access to a GMO regardless).
The following is how I understand the NCCN Guidelines would be applied from what I understand of your husband's diagnosis:
As stated in the Initial Risk Stratification and Staging Workup, now being classified as CT3 and having Grade Group 4 or 5 means your husband has 2 high risk features. Two or more of those features then classifies him as Very HighRisk (Section PROS-2)
The Initial Therapy chart for High/Very High Risk Group (PROS 7) indicates that for patients with expected survival > 5 years who have RP and an undetectable PSA post op and Adverse Features (which includes extracapsular extension see footnote W) May opt for monitoring (which is not preferred for patients with multiple high risk features - from footnote CC) which leaves CONSIDER TREATMENT PROS-10 as the preferred option.
PROS -10 Life Expectancy > 5 years, Studies negative for pelvic nodeal recurrence and distant metastases +/- positive fossa recurrence or imaging not performed then EBRT+-ADT (preferred)
From PROS-10H
"Currently, the primary method for personalization of treatment from localized to advanced prostate cancer is based on prognostic risk stratification, rather than the use of predictive biomarkers".
If it were me, I would draft an email to the surgeon and copy the Genitourary Urology Department chair stating that based on your understanding of the post surgical pathology ( include a copy) and NCCN Guidelines your husband is in the very high risk category with two poor prognostic indicators. Because of this, the guidelines state you should meet with a Genitourary Oncologist and RO without delay. I don't believe that communicating past delays and current distrust of doctors will help, but rather hurt your cause.
Just the thoughts of someone who, like most of us on MCC, are in way over our heads through no choice of our own.
Bill
Thanks Bill for your extensive and insightful post - as always it is right on the target, objective and at the same time comforting.
Unfortunately person who was making scheduling had complete picture, was explained findings and also checked them via patient chart. She stated that she has to follow exact parameters that were given to her - she has to "check boxes" literary ( I know , insane...) and if there are no metastasis, she can not make an appointment with oncologist, and that surgeon urologist works with patients who have localized or locally advanced cancer. If we will have to fight for getting any kind of care , I do not know how is it possible to go forward here :(. We had to wait for every single app. for months from the beginning but we were told so many times that this place is great and worth waiting - I can only say that it failed us on all points.
My husband (according to some articles that I found last night) has 4 high risk factors for BCR - T3e, PNI, Decipher higher than 6 and iffy margins.
Today he is taking catheter out and after that we will have to sit and make an extensive plan and hope that heavens will finally provide, since doctors obviously will not ...
Thanks for caring 💖, and I apologize if I sound down today, I am more than down , I feel useless and helpless - so sorry everybody , just not a good day ...