Part 1: Getting my misdiagnosis
I was with my long-term partner one weekend late in January, and he noticed a bit of crust on my right breast. I took a shower and it was hard to remove the sandy crust from my nipple. I did a self-exam and found a lump. It was about an inch and round. It felt like a river rock with a pebble on top. I was scared and called a friend. She said it might just be an infection. So, I tried moist heat. It did not go away.
I had just started a new job at the beginning of the month. My insurance had not started at work. I got an appointment with my gynecologist the first day it would be effective. I didn't know who else to go to and I trusted him. He sent me directly downstairs to the Breast Imaging Center, where they worked me in. It was 2/1/2018. They did a mammogram and then an ultrasound. I was told by the doctor of radiology that I had 3 areas, and two of them were very concerning. My heart sank. I knew I had a family with multiple instances of breast cancer. I had already had several mammograms and a scare in my late 20s. I had just turned 49. My gynecologist recommended a breast surgeon.
The discomfort of the ultrasound biopsy
I went to her the next week and she ordered a biopsy. I had an ultrasound biopsy. I told the doctor it sounded like they were rotor-routing my booby. They were unable to get some of the samples they needed, so I had to lay down on a mammogram table. It had a huge hole in it. Like I could have fit my whole body through the hole. It was very uncomfortable. They lined up the mammogram under the table and deadened the skin and then started taking samples. None of it really hurt. It was very uncomfortable. When they sat me up the nurse applied pressure to where they had taken the samples.
That hurt really badly, but she told me if she didn't apply enough pressure the complications would be very painful for days. I put ice packs in my bra as soon as I got home. It really was purple but did not hurt as it healed.
Stage 2B III Invasive Ductal Carcinoma with Microcalcifications
I was diagnosed with Invasive Ductal Carcinoma with Microcalcifications, and 4 to 5 lymph nodes were also involved. My doctor assured me that we had caught it early. It was HER2neu positive and ER/PR negative. She thought I was stage 2 B III. She felt very confident, 89 to 92 % that if I did chemo and a mastectomy I would be cured. I did not want to do Chemo, but she said insurance might not pay for chemo after a mastectomy. She sent me to her peer oncologist. They had both studied under a famous breast cancer doctor. I felt very confident that this would be about a year-long process and then done.
Scans showed spreading
She and the oncologist immediately ordered scans, since HER2 is known to spread. The CT and PET scans came back that it had spread. I was stage 4, not 2 B III. I started the gold standard treatment for HER 2, Taxotere, Carboplatin, Herceptin and Perjata. Definitely, it had spread to my liver, maybe to my lungs, a rib, an arm, and a leg. I could discount the lungs, as scar tissue from extreme cases of bronchitis. I could discount the bone stuff as old injuries from multiple car wrecks. The liver I had nothing. I rarely drink. I had no history of illness there. It made me really angry. The ups and downs of tests and procedures and waiting and diagnosis were very hard. I did a lot of praying and asking for prayer. I also started a blog on Facebook and that was very supportive and helpful to me.
Stay tuned for Part 2 of this story.
Do you have an MBC mentor/mentee?