Were you able to make app. with Oncologist if you had no mets ?

Hi Surf,

You can't catch a break! I can't believe that is really their policy!!! Can you ask your surgeon to do a referral for a consult on the pitential benefit of adjuvant ADT or ADT plus RT? If the surgeon won't/can't, perhaps the RO would be able to do so.

Bill

I was referred to an oncologist after my Gleason 8 biopsy. I have a post-surgery follow-up appointment next week. I am surprised UCSF does not give you an appointment.

If they continue being hard-nosed, I would shop around to see one some other place. I assume that you are familiar with the PCRI videos. Mark Scholz also has a practice in LA that is staffed by medical oncologist. His opinion is precisely that they should be the gatekeepers for PCa and not urologists. Your insurance might not cover it, but if you can spare something like $1,200 for a first consultation it would probably be worth it.

Thanks Bill for your help 🙏

Surgeon already said that "we now wait for PSA" and than we will see what is next 🤕. It is very hard to reach him directly, so far we communicate with his nurses and coordinators.
My husband called a coordinator and he said "no way Jose", only patients with mets go to onco. 😵‍💫 My husband tried to reason with him and explained that we were failed by doctors TWICE already - first AS was messed up since supposedly my husband was low risk and than it turned out he was not , and than once he was declared intermediate unfavorable he was told AGAIN "no rush, no rush , no rush " and this is VERBATIM what surgeon said , (I even recorded it ) and we know how THAT ended 😭 .
Now we tried to prevent another *oooopssss in 3 mos and look how they behave 🤯 ?!!??!??!?
I told MH to call Stanford tomorrow and we will call also other institutions - this is travesty of medicine , honestly !!! I feel like we live in Kongo or Kazakhstan and perhaps I am insulting those countries with no reason, maybe they treat their patients better ? 😢

That policy is absurd. In my case I asked my urologist for a referral to an MO and RO. He was able to get that done for me and both the MO and RO offices called me in less than a week to set up appointments.

Thanks Topf for the idea and for information about the cost 👍 ! We will start calling everybody tomorrow - this is insane !!!!! 😡

Thanks John for confirming that this is unheard of !
I can not believe the audacity, honestly 😡. If I told my patient to wait and than that patient ended up with 4+5 and EPE and I made not so great margins I would personally call my colleague to take my patient like TOMORROW and make the things right !
Unnnn-believable !!!

That's a helluva policy that oncology won't see a cancer patient. Sorry you and mr. surf have to go through this. Did you try UC Davis? They're an NCI comprehensive center not that far from SF. SCI in Stanford is too.

Thank you very much for trying to help 💗

Yes- tomorrow we will start calling around and see who can see him the soonest 🍀😔... *sigh

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

This is so disappointing.

I was not given a GU oncologist to work with until my cancer came back after salvage radiation.

I was only a 4+3, They didn’t know I had BRCA2 until 9 years later.

It could be that, even though he has all of these major issues, there isn’t much more they would do besides salvage radiation if the PSA rises. Once that fails, then like me, you would be eligible for an oncologist.

Seems like we’re stuck at a point in cancer treatment that they don’t have any other treatments until things get worse, so they don’t want to spend time on lower level issues that have specific treatments.

Since your husband doesn’t have metastasis chemo and Pluvicto Are not in the picture.

At this point if ADT keeps the PSA down then even an ARSI may not be prescribed. Of course that runs counter to recent studies that have shown a drug like apalutamide can delay becoming castrate resistant. They know that staying on just ADT may result in CRPC, though the timeline for that is indeterminant.

People have mentioned Doctor Scholz In Marina del Rey. Last I’ve heard he charges $600 for a Consultation. The question is, would that be too early?

Frustrating!!!