When women call the SHARE helpline and tell me they've just been diagnosed with HER2-positive breast cancer, I know how scared they are. Often they've consulted Dr. Google and learned that HER2-positive cancers are especially aggressive and likely to recur. I know, because Dr. Google told me the same thing seven years ago.
I was lucky, though—and so are the newly diagnosed HER2 patients who call the helpline. Shortly before I discovered I had breast cancer, a drug called Herceptin became available. It blocks the growth of HER2-cancer cells and dramatically cuts recurrence rates. Since then, additional HER2-specific drugs have been developed.
The advent of effective drugs has made HER2 cancer less scary, but the treatment is long and arduous, as my experience demonstrates.
Find a breast cancer support group
I was 55 when I found the pea-size lump in the crease of my right breast. I'd had my yearly mammogram six weeks earlier, but the lump was not in the "squishable" part of my breast. My gynecologist referred me to a breast surgeon, who performed a fine-needle aspiration to remove sample cells for examination. Because the cells were fast growing and highly irregular, an immediate lumpectomy was scheduled to remove the tumor, along with a couple of lymph nodes from under my arm.
The pathology report came back positive for HER2 cancer in my breast and in one lymph node. To remove more tissue around the tumor site and to see whether there was cancer in the remaining lymph nodes, I had a second surgery two weeks after the first. During the procedure, the surgeon placed a port into my jugular vein, since the blood vessels in my arms weren't hardy enough for the frequent intravenous infusions I would need. The lymph nodes were clear, but abnormal cells remained in the tissue surrounding the tumor site. (A year later, concerned about those cells and about changes in the other breast, I had a bilateral mastectomy. You can read about my mastectomy experience here).
Meanwhile I was given a PET/CT scan to detect any evidence of cancer elsewhere in my body. There was a spot on my liver that the radiologist suspected was a metastasis, but the liver specialist I consulted was sure it was a hemangioma, a harmless cluster of blood vessels. It was in an area difficult to biopsy, so he recommended beginning treatment immediately and then examining the spot again to see whether it had changed. If it grew or shrank during treatment, we could assume it was a tumor; if it stayed the same size, it was a hemangioma. (It did indeed stay the same size.)
Herceptin is most effective when given in conjunction with standard chemotherapy drugs. My regimen started with an IV infusion of Adriamycin and Cytoxan every two weeks for two months. I felt lousy, the inside of my mouth broke out in sores, and my hair fell out, but I never threw up, and I was able to continue working throughout my treatment.
Then I was given Herceptin every week and Taxol every two weeks for two months. My long bones ached the day after the Taxol infusion. My fingernails and toenails turned brown and fell off, and my eyelashes and eyebrows disappeared, making me look like giant pink newt.
To help me tolerate the side effects of chemo, I was prescribed steroids, antinausea drugs, antacids, Benadryl, stool softeners and tranquilizers, plus an injectable drug to boost my white-blood-cell count. They helped, I think. But with all the chemicals coursing through my body—and with the shock of being diagnosed with a life-threatening disease—I felt dazed throughout the four months of chemo.
After the four rounds of Taxol, I continued Herceptin alone every three weeks for the remainder of the year. For me, the only side effect of Herceptin was a runny nose.
About a month after I completed Taxol and while I was still being treated with Herceptin, I began six weeks of daily radiation to "sterilize" any remaining cancer cells in my right breast. I was surprised at how little pain radiation caused—about as much discomfort as a bad sunburn.
Because Herceptin can damage the heart muscle, I was given a MUGA scan every three months to test how efficiently blood moved through my left ventricle. My score declined over the year but did not fall below the cutoff for continuing treatment. So nearly 18 months after finding my tumor, I finished treatment.
I thought I'd be thrilled. But I was terrified. All those months on drugs, all those visits to doctors, all those blood tests and scans had made me feel safe. When they stopped, I felt unprotected. So I was relieved that initially I had checkups every three months, then every six months. By the time I was told I needed to see my oncologist only once a year, I was ready to cut the cord.
Although not every woman with HER2 breast cancer will be given the same drugs I was given, and not every woman who gets those drugs will respond the way I did, I think my treatment and side effects were fairly typical. So when I talk with women who have just been diagnosed, I know the road ahead is long and the terrain may be rough, but I feel confident in assuring them that if they put one foot in front of the other, chances are good that they'll make it to the destination of renewed health and that one day the journey will be just a memory.
Looking for more information about Her2-Positive breast cancer? Check out this post on breast cancer testing, including Her2 status.
Megan is a volunteer on SHARE's Breast Cancer Helpline.