Mom_of_3's Story

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"I was first diagnosed in November 2008 and had a lumpectomy (1/09), chemo (2/09-4/09), and radiation (33 treatments 6 & 7/09). Sentinel node dissection; no node involvement. Clean margins. I was not given any adjuvant therapy.

"Thanksgiving day 2013, my daughter and I put the turkey in the oven and went Christmas shopping. When we returned home, I had a seizure in the driveway. It lasted just a few minutes. I took an aspirin, propped my feet up and then went to bed later that night.

"The next day, my entire family loaded in our van to head into DC. I had another seizure before we got out of the driveway. My husband told our children to go back in the house and he took me to the hospital. Our local hospital did a CT scan and informed me I had a large mass in my brain. I was taken to Johns Hopkins. We had to wait 10 days to have surgery because I took an aspirin on Thanksgiving! The surgery removed 99% of the tumor, and I was home for Christmas. I had 3 days of cyberknife 6 weeks later. My medical oncologist put me on Arimidex.

"One year later I had one day of cyberknife for a very small piece missed on the first go-round. Eight months later I was having my second craniotomy to 'clean up'.

"About a week after my second brain surgery, I started having terrible pain in my sternum, left collarbone, left shoulder and shoulder blade. My medical oncologist said it didn't seem cancer-related, but he would schedule an MRI if I wanted. I did. Medical oncologist called with results, saying nothing appeared on the scan, so it wasn't cancer. Three weeks later the pain was worse. I called the medical oncologist's office, explained who I was and then he gave me scan results. And while I was certainly delighted it wasn't cancer, it was still very painful so could they suggest a doctor I should see? The nurse put me on hold then came back and said, 'The doctor says of course there's pain, you have a lesion on your sternum.' I was a million things at once -- stunned, angry, speechless, confused.... I made an appointment for the following week.

"My husband and I sat in the medical oncologist's office while he told us that I had a lesion on my sternum and a few spots on my liver. Again, stunned, speechless. Was someone going to tell me this? If I hadn't called, how long would the cancer be growing before I was finally informed?!

"Needless to say, we fired that medical oncolgist that day. I met with a new medical oncologist a week later. He said I also had cancer in my left axilla lymph node. He put me on Afinitor and Aromasin and scheduled me with the radiation oncologist the following week. One proton zap to the sternum and the pain is virtually gone.

"Unfortunately, the Afinitor/Aromasin combo did not work for me. Bone mets are basically stable, but nodules appeared under left arm and progression in liver. I am currently undergoing radiation to the left lymph node, and I just had a liver biopsy. I finish rads in four days and meet with the medical oncologist for the biopsy results and treatment plan in five days. My brain is currently clear.

"I am frustrated and scared but try to keep a positive outlook. So many amazing new treatments. We are trying to stay away from IV chemo until absolutely necessary (although with progression in the liver, that's probably where we're headed) and trying to find a good clinical trial at Hopkins' new immunotherapy Clinic.

"I know I am fortunate to have had about 2 years with very little treatment intrusion on my life, but I desperately want to get and stay stable for a very long time. I have 3 children, and I want to see their graduations (1 from high school, then all 3 from college), weddings, beginnings of careers, grandchildren.....

"Thanks for letting me share and for having such invaluable information and support."

-- Mom_of_3, diagnosed metastatic in November 2013

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