On May 4, I had a biopsy with a diagnosis of Invasive Ductal Carcinoma and was triple positive, ER 100%, PR 70%, and HER2 +3. My surgeon and I had discussed Herceptin, chemo and what likely lay ahead.
On June 4 I had a lumpectomy. 3 nodes removed, all clear which was great. Two weeks later, my surgeon spoke with me about a port, what that would entail, and checked that I had made my oncologist appointment. Healing was going well, I was ready...
On June 29, I met with my new oncologist. The new diagnosis from the surgical pathology report: Invasive Lobular Carcinoma with some Lobular Carcinoma in Situ; tumor was now 0.6cm; Grade 2 (6/9 Nottingham scale); T1b, N0, MX; ER/PR positive; HER2 positive. Tamoxifen for 5 years, standard radiation.
I started again searching the American Cancer Society, National Cancer Insitiute. I went to the support groups, discussion boards on BreastCancer.org and HER2Support.org. I searched for staff members I had referred to me by friends only to discover they not only worked out of the larger hospitals in Grand Rapids but that just about everyone there works here too and they confer with one another.
With the type of breast cancer I have AND the fact that it is more unique being HER2 positive, I felt I was going to have to go to some place larger for the best chance of having patients like me who also had smaller masses under 1 cm. I considered the University of Michigan, but the site seemed to indicate that a physician referral would be the best way to go and I didn't want to wait until next week to discuss that. I looked at other Cancer Treatment Centers and then one particular place came to mind. It was worth a shot, especially since some of the research I was using in my thought process was done there.
This morning I took a deep breath and called The Mayo Clinic in Rochester, Minnesota. My late husbands partner had gone there many times for treatment of his MS and spoke so highly of the facility. What have I got to lose by inquiring? I was running out of options and time.
I spoke with one of the nurses for quite awhile. She took all my information, gave me a patient number, and I shared my concerns which she took note of. She then transfered me to the oncology department where my case will be discussed to determine whether or not they can be of help to me in creating/suggesting a treatment plan. Usually they like to have your surgery done there...I'm a little ahead of the game. She said someone would be contacting me regarding my options in the next two days and they likely would want to do a couple additional tests. Not surprised there.
If it happens, it may be a long drive, but one I have done before on my own from Minneapolis to the Ludington ferry. I'll take a plane if that is needed and rent a car. But most of all I am hopeful to be reviewed with fresh eyes, open minds and an extensive number of patients and their conditions. I am almost six weeks out now from surgery and am aware of the time going quickly every day. But I am more concerned about not starting with the correct program as my first step to the best outcome I can get.
If Mayo, with all their medical expertise, says my oncologist is correct and not being too conservative in his treatment option, then at least I can come back secure in taking Tamoxifen for the next 5 years. I will have the peace of mind in knowing I went the extra mile to find the best solution for me and that is it.
The sad part of all this my fellow cancer surviors know all too well:
Getting diagnosed is difficult enough. But having to decide what treatment is best when your life may depend on it? Only those who have fumbled through all the paperwork and tests, diagnoses and treatment options, pain and uncertainty, truly understand the toll it takes on you mentally, physically, socially, and emotionally. In my case, even with supportive and caring friends, there is no one vested as much in my decision as me. That one thought reinforces the fact that I have to depend on my research abilities, my body and my mind, be my own advocate at times, and truly believe in myself enough feel confident I have made the right choice for me.
It's no wonder I can't sleep at night sometimes!
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