Update: I also forgot to mention that I have Osteoporosis also. My mom took Tamoxafin for 5 years after her breast cancer surgery, and now she has full blown severe osteoporosis with inability to stand up straight. It has crippled and incapacitated her. I don't want to end up like that. I got my Oncotype results after waiting 4 weeks. It showed a very low risk of recurrence (4%) with taking an AI and oncologist says it will be about 10% risk over a 9-year period if I don't take an AI. I was disappointed to find out the Oncotype test only tells whether there is a need for chemo, which I already knew there wouldn't be. My surgeon had advised that chemo would not be necessary based on my biopsy and post-surgery pathology results.
So when she had "good news" (i.e., no chemo), it was really deflating since I already knew that and was hoping she would say I didn't need radiation. Nothing was shown about risks or need for radiation! She couldn't even give me any information to evaluate whether radiation was a good option for me or not - despite it being recommended as a standard, "one size fits all" treatment.
When I asked what recurrance odds would be with radiation, she just said a "slight" benefit. I told her "slight" benefit isn't good enough. I feel like I have been given very little information with which to make a major life/health decision. If in doubt, I'm not buying into radiation. Since the risk difference is so small between taking AI vs. not taking AI, I'm not going that route either since my quality of life already sucks and I have so many other health issues with the EXACT same side effects. Why would I want to take something that makes them worse? No thanks.
I already had a compression fracture of my vertebrae when I was 47 due to the osteoporosis and it has greatly impacted my quality of life. That was in 2008 and I'm still suffering severe back pain. If a doctor can't provide any more compelling evidence and substantive data beyond "slight" benefit, I'm not risking getting leukemia and worsening my already bad osteoporosis, in addition to all my other autoimmune diseases. My mother doesn't want me to do it either since she is now suffering with the effects from a 5 year tamoxafin regimen. She doesn't recall the doctors telling her in advance that it would worsen her osteoporosis.
So far, I am very disappointed in this entire process and the lack of direction I have received from the "team" of doctors. There seems to be a disconnect between doctors. Yesterday I got a call from a radiologist to set up an appointment, after I told my oncologist I would not do the AI or radiation. Turns out my PRIMARY doctor has sent in an order/referral! Does this seem inappropriate to anyone since I already have an oncologist?
The whole process so far just feels like a major cluster. I truly question whether this broad-based, "one size fits all" approach is really recommended for the benefit of the patient, or the benefit of hospitals making more money. These "treatments" only seem to be recommended as an "insurance policy" and nothing more. Even then, the doctors do not provide any compelling reason to justify a risky course of action that has potential to cause more damage than benefit. I am still continuing to research on my own, since virtually all the statistical data I have found (albeit limited) has come from my own initiative. I wonder if others have had this experience with their medical "teams"? No doctors, nurses, etc. have been able to answer my questions, including why I am still feeling so cold all the time (my temp has consistently been below 97 degrees since surgery). Has anyone else out there had difficulty in getting straight answers from the medical community?