Let me start by saying this was not intended to be my first post on this site. I kept thinking I would find the time and space to write a few chronological posts about what has happened and how I have felt since I found the tumor and received my diagnosis. Maybe I will still find time to go back, but for now I need to go forward. Fast.
To anyone reading this, writing is not my specialty. Please forgive all my grammatical errors and tense changes in advance.
So far, I have only met with doctors at PAMF, a local branch of Sutter. To be honest, I have loved all the doctors I have met. I am feeling guilty even trying to pick the right team. I have now met with two surgeons, two oncologists, and one plastic surgeon. I am also trying hard to get appointments at both Stanford and UCSF. Unfortunately, time is not on my side. Everyone I have spoken to has given me different opinions on all but one item: I need to be in surgery or chemo in the next two weeks.
Last week, I met with a surgeon and plastic surgeon who were very compassionate and kind. After more information and conversations, I do not believe I will be using either of them. I have a very dear family friend who has been my lifeline to help make sure I am in the best hands possible. He has contacted doctors and surgeons across the country on my behalf to make sure I am given the best options. My heartfelt gratitude towards him and his family are without measure. I might share later who has helped me on my journey but I also want to respect everyone’s privacy.
He connected me with doctors at Stanford and UCSF that are advocating and referring my case out and trying to help me build teams at both locations. I have a dilemma. Everyone agrees quick aggressive treatment is needed, and I am not sure the wheels can turn fast enough for either of those locations to be a viable option. I am not giving up hope! Fingers crossed I might have appointments with a team at Stanford next Tuesday, February 16th. Hopefully, I will hear back soon regarding this possibility. I am also emailing and texting with the doctor at UCSF that is trying to get me on the books with doctors with full calendars. Appointments there are yet to be determined.
The doctor at Stanford that my friend connected me with has been amazing. He and his wife are doctors at Stanford and are not only trying their best to get their favorite surgeon (who happens to be on sabbatical) to see me next week but have also looked into every doctor at PAMF I have met with and found teams at PAMF that they know and trust.
Today started early. I met with a PAMF surgeon, Dr. Runi, at 7:30am who added me into her full schedule this week based on the referral from the Stanford doctor. Both Jeremy and I liked her very much. She specializes in breast cancer and is kind and exceedingly bright. The method and recovery she discussed was also much more comforting than what the first surgeon had outlined. Her opinion was based on my type of cancer and all other criteria points that doing a mastectomy first was the best course of action. She did indicate she wanted it scheduled very quickly as well. I will meet with a reconstructive plastic surgeon from her team next Wednesday. I am hopeful that even though I am not completely certain that she will be my surgeon or that surgery is the first step, we can get it on the calendar.
I then met with two PAMF oncologists. They were both great but had vastly different opinions. The first one is on the same team as Dr. Runi, but she was a strong proponent for chemo first. She did say my case needed to be reviewed by the “tumor board” before any final decisions were made. The second oncologist in Mountain View (my “home” location) had an opinion more in line with Dr. Runi - mastectomy first, chemo (and radiation) after. Jeremy is more decisive than I am and he preferred the second oncologist. This relationship is long term and important, and I still feel like I am weighing the odds. I feel they have each advocated for me already in ways I appreciate.
While I was there I had a chest x-ray and EKG. This evening I go back for a pelvic ultrasound due to some significant changes in my menstrual cycle.
It is crazy how quickly things are happening. Just since I started to write this I received a call from Stanford. Fingers crossed I should see Dr. Dirbas (surgeon), an oncologist, and plastic surgeon next Tuesday.