Keys to a Successful Doctor's Appointment

I value my doctor’s time and knowledge. But try as I might to communicate calmly and clearly, my breast cancer plastic surgery appointment this week was evidently a fail after reading the “notes”.
I am a graphic artist with tech skills. So I brought in an outline drawing of breasts to I could mark the Birads 3 scar on the left and lymph node that they were following, along with areas I had questions about, a lump on the right, a seroma, and whether the size of my breasts (C cup on left, D cup on right) was stable as there have been ongoing changes over time. And I brought screen shots from the last MRI that showed where the seroma is (it’s not palpable) as I realize the MD may not have time to refresh their memory about every detail of my case when seeing a series of patients that day. I also had the color graphic from the radiation dept that showed where the partial radiation was centered, as it seemed the lump may be expected necrosis. I thought it would help the discussion.
Not so. The notes read, “Mrs ____ came in with a variety of complaints . . .”
The notes say I questioned a scar on the right and was unsatisfied with the size difference even though I “had been told they’d never be perfect”. (The Birads 3 scar is on the left). Also says I was unsatisfied with the nipple on left, that’s where the seroma is.

And this is from one of the top cancer centers in the US. The note was written by the NP and approved by the physician.

I do not believe that if I write a MyChart message back that the physician would actually see it. The answers always come back from the nurse or NP on his behalf.

I’m planning on writing a paper letter to the physician. I really like him and our appointments have always seemed to go very well. I plan on explaining that my drawing and screen shots were intended to be helpful. That my list of questions is mostly based on my lack of knowledge on prognosis, what should I expect next? I WILL, although I think many people would not, say I’m sorry that it seemed that I was complaining. And tell him, truthfully, that I really appreciate his abilities and have felt very confident in the decisions that have been made.

The reality is any medical facility worth visiting has more demand than resources to satisfy demand. So the time doctors have to spend with any individual patient is necessarily constrained. Given that reality, my concept is the patient should view an appointment as a final exam. At least that is my concept as I prepare for the appointment to discuss a treatment for advanced prostrate cancer. Study, do not just read, books, watch and re-watch videos, and visit forums regularly to learn enough to "speak the language", to diagnose, as best you can, the stage of your disease and, in particular, the treatment pathways for your stage.

For my visit I are preparing a list of possible treatment pathways with as much detail as I can. Given I am fortunate enough to have a care team at Mayo PHX, I fully expect the doctor will be appreciative of my efforts. Together we can quickly "get down to brass tacks" and consider the pros and cons of the doctor's suggested pathway. If I have questions, they are the most pertinent to the discussion.

Yes you are very fortunate 👍

It’s always good to know about what’s going on as it regards to studies, results , new meds , genetic disposition and more . I participated in a program called all of us and I have a good list of contraindicated meds based on my genome . 🧬 onfi almost killed me 🤷🏻‍♂️

Without fail, I am asked to complete a survey after every appointment whether with a doctor, NP, PA or lab services. That is the place to air your concerns if there is a lack of communication, which is definitely is a two-way street!

My mother used to say “ Don’t put on lipstick because they won’t think you’re sick!”
She was sort of joking, and we laughed at the time...
BUT, I do think doctors draw the wrong conclusions if you look pretty healthy.
It is my nature to take care with my grooming as much as I can (not much after two and a half years of illness). I think it probably works against me.
Also, I try to be calm and coherent at appointments because I don’t want to be disregarded as an “hysterical female”.
My husband thinks I’m giving the impression of better health. Probably true.

If you feel well enough to do extensive research that may help.
I think many people here are barely getting through the day.
For myself, I research quite a bit, but I don’t retain very well, and don’t always get notes taken in a timely way.
I have days I can’t even eat.

It’s especially demoralizing to make the effort to have things to talk about, and then have a doctor brush off your concerns.

Yes, changing doctors is good advise, but sometimes very hard to do.

@dloos

That is hilarious, my mother use to say same thing, if seeing doctor because your ill, then look ill.

If feel good, look good.

If seeing provider on regular basis, they will notice difference.

I have lost thirty pounds, and sure don’t look the same!
I guess I’ll take our mother’s advise and skip the lipstick.

@dloos

My post was an interpretation of the recommendations on many PCRI videos.

A concept is one thing, implementing it another. For example, I fully agree that changing doctors is hard if not impossible. Anyone who has to remain the patient of a doctor who is dismissive/hostile truly has my condolences.

Perhaps I should have stated that patient involvement/knowledge has a spectrum from zero to what I stated as the maximum/gold/cadillac standard. I hope we would agree that anything is better than nothing.

I will post my experience after the treatment meeting next week, i.e. will all my effort have been worthwhile.
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