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Sep 4, 2012 12:19PM
I saw your initial posting from June of 2011 and noticed that you live in the town I grew up in--Midland, MI! I was just there in July visiting family,and your first posting and one I read from 2012 really touched me. I hope you are still doing well.
I just wanted to share that I was initially diagnosed with much the same profile as you--ER/PR+,HER2-, bone only mets, not particularly high grade, 2 or so, which I think is a very significant distinction. My tumor was large, as it was growing under a plane of fiborous tissue that had been there for 30 years! Because of the size of the tumor, I was just given Tamoxifen to start, I think to see how the cancer would react. Not a lot of hope, to say the least. Very luckily, it started to reverse immediately, which meant that it was an "indolent" cancer. I did eventually have a mastectomy, but not for 18 months because things stayed in remission and I was working a lot. I came across research that showed that patients with only small bone mets could benifit from removing the primary tumor. (One doctor wanted to take both breasts prophylactically, one wanted to "watch the tumor as an indicator of the cancer progression" and one doctor didn't want to do surgery at all because it "wouldn't change your prognosis in the least")! I also asked to have my ovaries removed because I had read that it seemed to improve the odds. I was still premenopausal when this all started.
Anyway, I am still fine after a little over three years. I still have PET/CT scans every 6 months, and I still get nervous about 2 weeks before I see my Angel of an Oncologist, but I feel great and am thankful that my oncologist always stood by my decision to "do" as little as possible and stay out of my immune system's way. No chemo, no radiation, only seven lymph nodes removed (and only three of those showed any cancer--but what does that mean? Not too clear on that whole concept!). I always imagined that I had a boatload of lymph nodes, and that's why I heal fast, and I begged my surgeon to leave as many as his conscience would let him!
Your kids must be starting school this week--my nieces are attending Midland High (my alma mater) and, I think Central, also my old stomping grounds. I am so glad deep in my heart that if you had to have breast cancer, that it was this particular variety. Even though "Stage IV" statistics can look grim, as my oncologist first said to me, "There's stage IV and then there's Stage IV...." Reading about your concerns for your children hit a nerve--telling my loved ones the shocking news was the hardest part of the whole experience.
I don't know what the rules are in this forum, but if there is a way for me to meet you when I am in Midland, I would love to go out for a cup of coffee--I cannot even count the amazing women--and a few men!--that I have met since this whole experience started. That would be June, 2009. My very best to you and your family!