Lovebird65's Story

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"My story began in November 2011 when I was diagnosed with right breast DCIS, ER-, PR+ and HER2/neu negative. I underwent two lumpectomies a week apart as the margins were too close, followed by 26 radiation treatments. Because it was such a tiny cancer and the only other cancer in the family was my mom at age 80, who had a simple mastectomy, gene testing was not recommended and would not have been paid for by insurance. I would be 5 years cancer-free this December.

"But May 2, 2016, two days after my mother died peacefully at my house I found a lump in my left breast. Off to radiology with bilateral mammograms and then bilateral sonograms right away. I knew it was cancer due to the unbelievable stress during the 5 years. Sure enough, triple negative. Before I left to see my daughter for 10 days, I had an MRI and PET/CT scan with tracer to look for mets. The good news was no mets found. I went off for my daughter visit for 10 days.

"The day after I returned I had a power port put in on Monday and started 12 weeks of chemo on Thursday, June 22nd with carboplatin and Taxol. The first two chemos were without side effects. After #2 my hair started falling out in clumps so I had my head shaved. It is so much cooler not having hair here in the Arizona summer. I don't miss it at all; wear hats in cold air conditioning and nothing other times. No one stares anymore and I cannot believe how many people are touched by breast cancer.

"After week 4, genetic testing came back positive for ATM gene mutation, so it's genetic. Now I have to see a genetic counselor and I had to tell my daughter as well as my nieces and nephews to be tested. There is a 2- to 4-fold increase in breast cancer and also pancreas cancer so my nephews need testing as well. My mom and dad are deceased and one brother as well, so it is not possible to determine the source, paternal or maternal.

"My white count fell dramatically after week 3 and I had to get shots, Zarxio, to build up my bone marrow (they usually come in sets of 3). My counts came back up quickly. The only side effects for me were diarrhea and lots of bone pain. I have fibromyalgia so the shots aggravate the fibro pain. I look at it as a good pain because it means my marrow is working hard. Unfortunately, the counts fall after every chemo. I was down in the critical zone last week with a white count of 1.6 and only 0.5 of neutrophils, so got two more shots.

"This will be week 6 of chemo with Taxol and carboplatin with 6 to go. Then I have 2 cycles of Adriamycin and Cytoxan every other week. After I recover from that they are talking about bilateral mastectomy with sentinel lymph node biopsy on the left, since I already had it on the right and was negative.

"There are many questions I want answers to from the genetic counselor and studies to date of survival rates for those with my particular circumstances. I am 65 years old. They say 5-year survival is great, but recurrence seems pretty high from what I've researched so far. Don't know what my final decision will be but I am not going down without getting some of my bucket list items checked off. I transcribed for 30 years, lots of NIH clinical trials, Mayo clinical trials and TGEN trials, so I have a higher knowledge base than some. Will try and post weekly, and so far hanging in there. But I am going to take some time to do things if I only have 5-7 years; 72 is fine with me, but only God knows."

-- Lovebird65, diagnosed triple negative in May 2016

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