"Reading the [other] stories make me sad and frustrated. I don't share my story often because I have 6 children, 1 daughter and 5 sons. Two boys still live at home, so it seems to work for the men in my life not to talk about the Big C. Like one of the [other] stories, I too did the right thing. In Sept 2008, I went to my gynocologist, cried as I told her I was certain I had a cancerous breast lump. I was 48 and had no family history of breast cancer, but my mom always told us how her father's side of the family all died from some form of cancer; her dad was in his late 50's when he succumbed to lung cancer. My doctor did the right thing, sent me for a mammogram with ultrasound. Nothing was seen. I was sure she thought I was being hysterical because a close friend had recently been diagnosed with breast cancer.
"Six months later, I returned to her with a grape size lump; she took one look and said I need to see a surgeon. The surgeon sent me for a mammogram again, which again said they saw nothing. I had fibrocystic breasts, so they blame that for not seeing anything on mammogram. I had punch biopsy which confirmed IDC. I was told I would need chemo first to shrink the tumor. My surgeon wasn't very forth coming when she said I would probably need a month or so of chemo then surgery.
"After 4 different chemo drugs, I finally had a double mastectomy 7 months later. Chemo did very little, 9 of 16 nodes were positive. I rang in the new year with radiation treatments. Took arimidex faithfully. My first PET scan post treatments came and I thought I had nothing to worry about. I had a reoccurrence in my right intermammary chain of lymph nodes (my original disease was on left side). To make matters worse, I had burned a bridge with my RO. But God was good, He brought a better RO into my life. He was so positive, said to look at this as a bump in the road. Things went okay for awhile.
"May 2012, I started to complain of hip pain. [My] doctor thought Arimidex was causing joint pain, encouraged me to take ibuprofen. Did bone scan, all looked okay. By November I asked for a PET scan, doctor said she wasn't getting them approved for other patients, offered CT scans. I refused, dug in, and said, "I want a PET scan." She finally relented, and I got a PET scan 3 months later. I had results sent to RO too. My RO called first, said we need to see you tomorrow. My MO called later and says nonchalantly, "We need to start you on a drug for [your] bones called Zometa." I went to RO and he said my hip was so bad it could break just walking around. I was devastated, how could this be happening again???
"Needless to say, I haven't been back to that MO. I went to MD Anderson, wish I had gone there originally. So, today I am on fourth MO, still with RO #2. I have bone mets in my spine, skull and hips. Fentanyl patches keep the pain under control. I have good days, then I have days where I sleep all day. I have been in a palbociclib trial 1 year, not sure it is really helping. I am told mets looks stable -- "Oh, but it seems you now have a new spot on your rib...."
"Oh yes, and here is the big kicker, I have been an RN for over 30 years [with] experience working in hospitals, my oldest son is also a physician. I refuse to give up yet and I plan to die doing things I like to do. I do not know how to share a photo, but if I could it would be from my recent 54th b-day, which I enjoyed horseback riding with my son and a couple of his friends. And yes, I paid the price -- was very sore for quite a few days afterward."
-- Sue2009, 3 years metastatic