I was 49 years old, and I hadn’t had a mammogram in three years. I decided to get caught up. I went for the mammogram and, judging from the way the technician reacted to the image, I was pretty sure something needed further scanning. I had an ultrasound at another appointment. They sent the results to my primary doc, who told me I had cancer.
I got a breast MRI, and they found a second tumor in the same breast. The breast surgeon told me I also had all the signs of inflammatory breast cancer; my breasts were pinker than they should have been, and they were radiating heat.
I started chemo a month after the mammogram. The surgeon wanted to shrink the first tumor before surgery because it was large, and she also wanted to make sure the cancer hadn’t spread. Chemo was the most effective way to do it. I went for treatment every other week for five months, then had a bilateral mastectomy. When I recovered from that, I had 40 radiation treatments, one every weekday for eight weeks.
My treatment was intense because it was a very large tumor and there was the possibility of inflammatory breast cancer. Once I got through radiation, I had 52 weeks of Herceptin [a drug that targets the HER2 protein in some breast cancers], and I’ve been on tamoxifen [which blocks estrogen from causing cell mutations that could lead to cancer] for five years.
In September, I’ll have been cancer-free for seven years. But I’ve had minor–and major–side effects along the way. Some have been temporary, like nausea from chemo. My doctors managed to control that with anti-nausea medications.
Others are permanent. The first I really became aware of was neuropathy in my fingers and toes, which I still have to this day. I have tingling, numbness–my fingers and toes don’t feel right. I don’t take any medication for it, it’s just something I’m aware of and accept. I’m an accountant, so at first I was afraid I wasn’t going to be able to run a 10-key calculator. It was scary until I found out that I could.
Courtesy of the tamoxifen, about once a month or so, I get pain like a hot poker in the knuckles in my left hand. It only lasts a couple of minutes and then it stops, but it’s blinding pain.
When you start chemo, doctors tell you that your hair is going to fall out. You think it’s the hair on your head, forgetting that you have hair on other parts of your body. My nose kept running, and I realized I had lost all my nose hairs. On the bright side, I don’t have to shave my legs as often.
Because of the intense radiation, I couldn’t have the typical breast reconstruction surgery, so I ended up getting a Deep Inferior Epigastric Artery Perforator or DIEP flap. Basically, the surgeon takes tissue from your abdomen and makes breasts out of it. My surgery took more than 12 hours. I had a second surgery for refinements, and then another to actually rebuild the nipples.
“Chemo brain” has been an absolute nightmare. I had nearly a photographic memory before this all started. After the chemo, I looked at someone I knew I had known for 20 years at my church, and I had to apologize because I couldn’t remember their name. It’s so frustrating.
Since finishing chemo, my memory has returned to probably 98 to 99% of what it was, but every now and again I’ll still have an instance where I just have this block, and I attribute it to chemo brain. A couple of months ago, I started having chemo brain symptoms again, as well as fogginess, blurry vision, and headaches. I wasn’t able to do a simple math problem in my head that I normally would be able to do without a second thought. My brain just wasn’t functioning the way it normally does. My oncologist sent me for an MRI to make sure it wasn’t cancer in the brain, and fortunately it wasn’t. (The blurry eyes were from dry eye.)
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I had one other scare that the cancer had come back or spread. I put my hand on my chest and felt what I thought was a lump in my right breast, the one that had the cancer and is now basically abdominal tissue. I found out it was fat necrosis; the radiation was still killing tissue.
I get checked out every six months. I’m very aware of every ache and pain in my body. But I live every day to the fullest because tomorrow is not guaranteed.
Lora McCann is a member of the National Coalition for Cancer Survivorship’s Cancer Policy and Advocacy Team, which advocates to improve the delivery of cancer care for everyone impacted by cancer.