ADT vs. Estradiol

Very helpful everyone - thank you!

Quick question: do I need a referral to get an appointment with Dr. Kwon or his team at Mayo? I followed Mayo's online process for requesting an appointment. I went through the first round of questions over the phone, and I said I would like to setup an appointment with Dr. Kwon. The individual I was talking with was with Mayo Radiation Oncology (someone in their intake dept). They said I'd be getting a call back from scheduling. It's been about a week and I have not got a call back from scheduling. What is a reasonable amount of time to expect a call back or do I need a referral?

There’s actually two possible uses for estrogen. One is to replace ADT the other as an adjunct to ADT.

Adding estrogen in a small dose increases the sex drive, which is almost eliminated by ADT. Usually, your body has some estrogen, but it’s normally hard to find if you’re on ADT. This exact issue was discussed in a recent prostate cancer bi monthly meeting where a GU oncologist answers questions for the first hour and discussed the use of some estrogen for that purpose.

Thanks for your response. I talked to Mayo Clinic Urology but they said they won't see me if my PSA is less than 0.4, and it currently is at 0.2. I'm currently working with an Oncologist at another Cancer Center. I was thinking it would be helpful to go to Mayo and get a Choline 11 scan and a second opinion from a Mayo Oncologist. Does anyone know if Mayo Oncology uses Choline 11 scans?

Did anyone mention what dose level of Estradiol are working as an adjunct to ADT to bring estrogen back to a normal level for males? It sounds like it’s not widely used or tested but wondering what may be working.

Thanks,

Phil

I heard a single patch, from the oncologist who answers questions at the BImonthly CSC meetings. To replace ADT you need three patches. I am not a doctor and cannot prescribe drugs for you. Ask your doctor about it, but at least you have an idea.

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. ____