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

Posted by surftohealth88 @surftohealth88, Aug 20 7:20pm

OK - here we go 😡
In spite of my husband having 4+5 pathology report after RARP and having "almost positive" margin and EPE discovered, we are not able to make app. with oncologist for consultations about possible preemptive treatment at UCSF !?!?!?!

Supposedly only patients with metastatic disease can have app. with oncologist ???????????? 😫

PLEASE somebody sh**t me !!! This is nightmare that never ends !!! 😭

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surftohealth88 | @surftohealth88 | Aug 21 10:43am
In reply to @dailyeffort "Hi Surf, The only thing that makes sense to me is that the people you are..." + (show)
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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

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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 ...

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lag | @lag | Aug 21 5:26pm

I think that Bill has given you good advice and insights, as has Jeff. Drafting the letter that Bill suggests seems like a good idea, and not so aggressive as to burn your bridges if you want to continue care at your current institution. Just be matter of fact and keep your very understandable anger and frustration out of the letter. And in the meantime, I think it will make you feel better and give you good information for future use if you do some checking into alternative institutions and providers you could travel to. Sending a tight hug; please keep in mind that you are NOT useless and helpless, just beaten down a bit today.

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surftohealth88 | @surftohealth88 | Aug 21 7:43pm
In reply to @lag "I think that Bill has given you good advice and insights, as has Jeff. Drafting the..." + (show)
Profile picture for lag @lag

I think that Bill has given you good advice and insights, as has Jeff. Drafting the letter that Bill suggests seems like a good idea, and not so aggressive as to burn your bridges if you want to continue care at your current institution. Just be matter of fact and keep your very understandable anger and frustration out of the letter. And in the meantime, I think it will make you feel better and give you good information for future use if you do some checking into alternative institutions and providers you could travel to. Sending a tight hug; please keep in mind that you are NOT useless and helpless, just beaten down a bit today.

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Hi Lag - thanks so much for your comment and taking time to help me, it is much appreciated. < 3
I am an introvert person and I avoid conflict of any kind like a plague, so all of my anger expressed here is here to stay, of course ; ). It takes a LOT to make me angry to begin with.
I am also too proud to beg for something that should be available to a cancer patient, especially for the amount of money charged. I know that an oncologist will not make any money (beside $250 !!!) by just talking to us since he can't get Genentech $20,000 bonus for prescribing new generation medication, but it is really disappointing.
There are so many hospitals around, this place does not offer anything that one can not find just going the same distance in opposite direction. We will not change source of care until we find a better place, that would be contra-productive. The whole California has a great misfortune that there is no Mayo Clinic in proximity, but perhaps it is time to venture out of state.

Once again, thanks for stopping by and trying to give me help and advice and for your kind words 😌

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dpfbanks | @dpfbanks | Sep 14 6:12pm

Our Urologist wanted to send him for salvage radiation after BCR 17 yrs post RARP. We wanted to be sure some disease to radiate so asked for an MRI - it came back clean so then we called a GU Oncologist. He was the one to discover the lung Mets after a PSMA PET. This was not a large COE - we went there later.

What I see in this world of cancer care is that they are all way too busy - 15 min appts - really? I think they throttle where they can and suspect you need that BCR or elevated PSA to get through the door in some of the bigger places. How far are you from Arizona? Mayo for another opinion?

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