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A friend, during his consult at Sloan Kettering, asked about the estradiol patch. The RO snapped, “We don’t use that!” When asked why he got the same answer.
We all know that these institutions have protocols - a very well defined set of treatments which only use certain drugs, specific types of radiation or combos of them.
We are mere data points in a graph, outcomes to be fed into an algo. No one is getting the ‘individual treatment designed specifically for you!’ as all the ads and promos assert.
It is rare to find a doctor stepping out of the box and prescribing estrogen or estradiol, unfortunately.
My own RO, whom I really like and trust, told me that he is on an advisory panel (and probably gets compensation) to study the efficacy of Orgovyx. No way he is giving you the patch!☹️
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Violates several of my rules...
I inform myself as completely as possible and take the time I needed in making a treatment decision, I always know that no matter the outcome of a particular choice, I made the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself.
I am in charge. Not my doctor. They need to be consulted, and their training, education, experience, opinions and ideas should carry weight as I make my decisions. But I never forget it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, with the focus on long life.
Rules for my medical team ...
Know your stuff. As part of my medical team, you must have a thorough knowledge of my cancer and of the latest developments in research and be ready to formulate a plan of attack. If what I ask about based on my research is not familiar with you, then admit it, say you will look into it and discuss on my next consult. Better yet, you will call me!
Do your homework. I expect you to have reviewed my medical records prior to my appointment, talked with other doctors I have seen that day.... You’ve looked at my x-rays; you have my pathology report, labs. I can tell when you're looking at my clinical data from tests for the first time !
Respect my point of view. Listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I’m sure you can help me to feel confident about the plan you and I have shaped for me.
Don’t close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Rid yourself of the temptation to make your day easier by delivering perfunctory care.
6. Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.
7. Please talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions?
And yes, the front desk is key, sets the tone, pleasant, efficient on check in and scheduling on the way out...a kind word, smile...and don't call me "honey." You have my records, I am ok with you calling me by my first name or Mr. ____