April 2011— I visit my OBGYN to check out a mysterious lump under my arm. It hurt and was red
and I had trouble shaving. The day of the appointment, the lump disappeared–probably some kind of inflamed sweat gland thing. (also, generally a BAD lump doesn’t hurt) But it got the doctor and I to talking, and he suggested that I get a mammogram and perhaps genetic testing.. I scoffed at his ideas about testing, because I’m only 35. I do go ahead and make the mammogram appointment though, mostly because he followed me to the appointment desk.
May 2011–the doctor’s office called and said that I would have to reschedule the mammogram since the machine would be down for maintenance. I do not reschedule.
August/September 2011–I start to feel tired, I mean REALLY tired. I did my best to do it all: career, house, family, kid sports, Zumba, gym time. But slowly things started falling off the schedule. I was basically waking up, doing work, then coming home to lay on the couch. On the weekends I slept as much as possible. It was during this time that I first noticed the skin change in my left breast. When I pressed in that area, I could discern a lump. It was painless and I couldn’t tell if it was growing. I began to be aware of it more and more though, and I caught myself wondering what it was even when I couldn’t see it.
September 28: Appointment with OBGYN to discuss current lump. He sends me to the special mammogram place, but he’s not worried.
September 30: appointment to get diagnostic mammogram, ultrasound, and resulting biopsy
September 30-October 3: longest weekend of my entire life
October 3: THE PHONE CALL
October 4: Meet with the breast surgeon. He suggests that we could do some kind of surgery by the next Tuesday. Wait–what??!?
Diagnosis: Invasive Ductal Carcinoma(IDC), multifocal, stage 1, grade 3. Basically there were two tumors (1 cm, 1.5 cm) sitting in or around an area of Ductal Carcinoma In Situ (DCIS). Stage 1 means the tumors were small, grade 3 means they were aggressive. Lumpectomy was an option, but the location of the tumors meant that I would be seriously disfigured. If I chose lumpectomy or mastectomy (unilateral or bilateral), I would probably just have surgery and then go on a hormone therapy regimen for five years. My tumors are hormone receptor positive (ER+, PR+), and I’m still young (had a hysterectomy in 2009 but kept my ovaries), so I had lots of hormones to feed the pesky cancer cells.
October 6: Meet with the medical oncologist. He was nice.
October 6: Chest X-ray to check my lungs
October 10: get an MRI because I mentioned to the oncologist that I had headaches.
October 10: Meet with another breast surgeon just to get a second opinion. She was weird.
October 10: Meet the plastic surgeon. He was well-dressed.
1. Lumpectomy followed by hormone therapy. Horribly disfigured chest area.
2. Unilateral mastectomy, followed by hormone therapy, obviously asymmetrical breasts, always wondering if the right was plotting to grow its own cancer cells.
3. Bilateral mastectomy, followed by hormone therapy, reasonably symmetrical breasts a cup or two bigger.
4. The genetic testing should have made the decision clearer and easier, but it just messed things up. The results showed that technically, I do not test positive for the BRCA gene. The testing did reveal that I have some kind of genetic mutation that only 16 other women have ever had. This mutation isn’t on the radar specifially for breast cancer yet–but me and the 16 other women have that gene and breast cancer, so maybe there’s something there.
5. Luckily, I felt very well informed by every one of my doctors. They came across as a real team, always telling me that I had choices. Nobody was telling me to not have the lumpectomy and nobody was telling me that bilateral was the only choice. My breast surgeon, my oncologist, and my plastic surgeon all called me personally to discuss my case, and one of them even called me at 9:30 at night from a conference in California due to a rambling email message I had sent. I did not feel pressured by these men at all. I DID, however, feel pressure from the cancer. Yes I had choices and yes, each one of my choices was well-presented, but I still HAD to make a choice when all I really wanted to do was crawl quietly into the corner and hope that it would all go away.
November 3: Bilateral mastectomy with lymph node dissection. Tissue expanders put in place to make room for eventual reconstruction.
The surgery was a success…sort of. First, it was discovered that the cancer had not spread to my lymph nodes, which is excellent news. I was in a lot of pain and I ended up staying in the hospital for three nights, but at least they took good care of me. When the surgeon called with the pathology report, I was less than thrilled because it turns out that they only got most of the cancer cut off. There was a positive margin, which means that there are still some IDC and DCIS cells hanging out on my left side. Now we are looking at chemotherapy to kill any freak cells that tried to detach and hide in my body PLUS radiation to kill the freak cells that didn’t get cut off with the surgery.
November 29: Outpatient surgery to fix the incision area on the left side. Apparently the dye they used to identify the lymph nodes got in the way of allowing the mastectomy incision to heal.
December 27: First Chemotherapy infusion. The schedule will be 4 cycles of Taxotere/Cytoxan every three weeks. Five solid days of gross side effects, with day 3 being the worst.
January 18: second TC infusion. The side effects started hitting me much faster this time. And Dr. D said my liver enzymes have been elevated the last few visits. But my white blood cells popped back into normal range, so at least my body can do something right!
February 8: Third TC infusion. I know I said it last time, but side effects hit EVEN faster than the previous two visits. The nausea was much worse. My liver is back to normal, so yay liver! One more infusion to go…
February 29: Final chemotherapy visit. One more round of ugly side effects and then on to radiation. I honestly don’t think I could ever endure this again. Hoping I’m finished for good!
March 21-May 14: Radiation. Harder than I expected, but way easier than surgery and chemotherapy. Fatigue and skin ouchiness prevailed.
March 7, 2013: Latissimus Dorsi Flap Surgery, tissue expander exchange, silicone gel implants inserted.