So after my diagnosis, I immediately started my own research via books, others with cancer, and the internet. I want to feel like I know what the best options are, and if they are available for me. It is amazing how much information is out there and yet surprising that with all of that information, the treatment of Breast Cancer is roughly the same as it was 20 or 30 years ago: Cut, Poison and Burn. The cut refers to the surgery, either mastectomy or lumpectomy depending on how much tissue is involved. Poison refers to chemotherapy, and Burn is for radiation. At the time of my diagnosis and for the month until surgery, I knew that surgery was definitely in my future, but the prescription for chemo and or radiation doesn't isn't definitive until after surgery when the Doctors can tell how far the cancer has spread. While I didn't know yet what would be prescribed for me, I wanted to know all I could learn about the treatments before surgery.
It seemed an obvious choice to travel to Salt Lake City to the Huntsman Cancer Institute to get a second opinion, especially since we live just an hour and a half away. What a beautiful and welcoming place they have there. I was impressed by the compassion shown by the nurses especially. The program there is very efficient and well run. My diagnosis was confirmed by the Surgeon there as well as the recommended surgery; a full mastectomy. After the trip down to Salt Lake, I decided to stay close to home for surgery and felt confident in the abilities of the surgeon here.
It sounds crazy but with continued research, what did not seem an obvious choice was to accept chemotherapy treatments if they were recommended. I read one study that found that chemo is least effective for women in my particular demographic: under 40, hormone positive, and HER2 negative. There are so many complications, side effects, and long term health compromises associated with chemotherapy that I felt very concerned about how it would affect me. I also read some very compelling evidence that diet has a profound effect on not only cancerous cells but on overall health. I decided to begin by altering my diet and to wait and see what treatment would be prescribed post mastectomy.
May 18th the day of surgery finally came. Things went well in the operating room and I woke feeling better than I had anticipated thanks to the drugs administered during surgery. The night in the hospital was uneventful except that I woke in the night to itchy skin that developed into hives. The morning after the surgery I was given a second dose of Percocet for the pain and the hives immediately got worse and as the nurse was going through the discharge paperwork, my throat started to swell. Two Doctors, and five nurses later, I was admitted to the ICU for observation for the allergic reaction to medication. My overall positive experience at that point took are sharp nosedive from there. The ICU was not comfortable and my new nurse was not nice and I'm sure I was the healthies person to be in ICU ever. I really didn't need to be there but I followed protocal.
It wasn't until about a month later that I was sent to see the Surgeon for a delayed post surgery follow up. He had met with the "tumor board", to discuss my follow up treatment. I was told at that point that radiation was the recommendation, so I scheduled a visit with the Radiation Oncologist. During my hospital stay and ICU visit a Doctor there had some blood work done and one of the tests indicated that I had borderline Lupus. As I discussed this with the Oncologist I learned that people with Lupus are not candidates for radiation. I was not too disappointed since due to my research, I had reservations with radiation as well. The Oncologist asked if I would at least consider chemotherapy and if the answer was yes, she thought I should have what is called an Oncotype DX test done. So off went my sample of breast tissue to a lab in California for the super expensive Oncotype DX. Two weeks later I had a test result of 48. I understand that it means I roughly have a 48% chance that there could still be some cancerous cells running free somewhere in my body ready to attack me again.
During the two weeks the test was being done, I continued my study of chemotherapy and coupled that with lots of prayer. I really felt led to certain studies, and to a holistic conference in Salt Lake City. I am generally a bit cautious about how much credence I give to information coming from sources outside of the mainstream medical community. However, what I was learning from other sources really resonated with me and made sense. One thing I have learned above any other is that in the treatment of my body I need to take the lead. No one cares more about my well being than me. I have to be as informed as I can be, try to be open minded and to make choices about my own care. I don't expect other people to understand or agree with my decisions, but I know for me, chemotherapy is not the best option. I would never have thought I would make that kind of a decision, from the outside looking in it seems a bit irresponsible. It has not been an easy decision in that it is frustrating to the Doctors and to others around me including some family members. But I feel completely at PEACE with my decision. So for me it was cut only; no poison, no burn.
No comments:
Post a Comment