Yesterday and today I have been collecting records: my clinical records from my surgeon and oncologist(s), my MRI CD from North Ottawa Hospital, and tomorrow I pick up my mammo films from Mercy Hospital & Lakes Clinic, then return to JFCCC and pick up my specimen slides and glass. My 3 month medical adventure reduced to forms, films and glass slides!
At 4:00 today I met the oncologist who was actually my first choice, Dr. A. I wasn't sure exactly how this would go since I had just met with one of her colleagues the day before. She introduced herself, then I introduced Carol and we were ready to go. I stated I had seen Dr. B the day before and that I had told him I would be seeing her before deciding who I hoped to work with.
She started her time by asking me about me, not my cancer. It wasn't long before she knew about my late husband Jim and his death, my mom's death, moving, retirement, being here, how I have adjusted, my health over the years, how I've been sleeping, feeling...she had an overview of some of my life, at especially the last 8 years, before I realized it! Then she performed her own exam. I felt at ease the entire time.
Dr. A left so I could get my shirt back on and gave Carol and I a couple minutes to compare notes. When she returned, she had my path reports and wanted to go over them with me. She had highlighted things to focus on and shared her thoughts. It was like hearing some of it for the first time. When she spoke of the Nottingham Score, she noted that it was the reviewers opinion when assigning each of the numbers (1-9). That Grade isn't as secure as one would believe. Again, I was in the gray area there too so it helped to know it wasn't an exact science.
When she got to the second page where the hormone receptors and HER2 were listed, she noted they were both positive, the first good, the second not so good. Then she began to confirm some of what I had discovered and elaborated without me asking or saying anything! She noted I have a small tumor and that it's a gray area. BUT she also stated that recent findings indicate that it isn't the size of the tumor but its biological make up that seems to determine the rate of reoccurance. She believes we have to seriously consider that when deciding what is the best kind of treatment to offer. At the same time, she stressed that the patient, their health, and other factors play an important part in that decision as well.
She brought up the Oncotype Dx test that I had read about and said that she would have ordered this if I wasn't already going to Mayo Clinic. I told her I didn't think I could have the test because it is usually used with HER2 negative patients. She said it would work in my case because it makes things pretty clear whether or not you do chemo/herceptin/rads or Tamoxifen/radiation. That wasn't brought up previously.
Since I am going to Mayo Clinic, which she definitely is in support of, she stated she is very interested in hearing their thoughts regarding my path reports and their testing. She genuinely seemed excited with the opportunity to review and learn from their research. She acknowledged that people like me are in the "gray area" and that my case is rare in a smaller facility. Dr. A reminded me that is likely they will suggest a plan, maybe more than one, and just like my present situation, will leave it up to me to decide. It's just the way it is.
One of the reports from MD Anderson in Texas she quoted, was the same I had discovered on line and asked questions about in my previous consultation. She mentioned it because she has a concern regarding HER2. "If it is not addressed, it can increase the possibility of reoccurance to 25%, and that is too much for me." Too much for me too!
Dr. A said she felt I would be an excellent candidate for TCH which avoids the harsh Adriamycin and that she had no doubt I could tolerate it quite well. I had told Carol earlier I was going to ask about the possibility of that protocol IF I ended up having the chemo treatment offered to me. We talked about all the side effects from everything and she stated exactly how she would guide and observe and what would happen if I had any negative reactions. We also talked about Tamoxifen and I stated that taking a pill is a great thing, but had read it was basically ineffective against HER2 and she agreed that the general opinion.
Dr. A was called out of the room for a couple minutes and Carol pointed to the words at the top of her note pad..."She is the ONE!" I wholeheartedly agreed! If I have to endure 1-5 years with someone, she is the one I know I could walk this road with and have complete confidence in. I felt this huge weight come off my shoulders. She actually understands my concerns, has addressed just about every one of them and I didn't even have to bring them up.
When she returned and we were winding up our conversation, I looked her right in the eye (kind of important to me as my friends know well) "I feel very comfortable with you and would like to know if you would be willing to work with me for the next five or however many years. Would that be acceptable to you?" She had a very warm smile and without hesitation said, "Definitely"
NOW I have my medical oncologist and my chosen family sister feels as secure in that decision as I do. I already feel an incredible sense of relief that I can't begin to describe to you. Let's just say, for a person who struggles to get to sleep at night, I have absolutely NO DOUBT, that after this decision today, tonight...I will sleep VERY well!
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