A cancer researcher’s personal cancer story
The discovery of a lump came about as the result of a complete accident, a sweeping of my finger past a swelling as I mindlessly adjusted the ribbed shirt I was wearing during an otherwise
The discovery of a lump came about as the result of a complete accident, a sweeping of my finger past a swelling as I mindlessly adjusted the ribbed shirt I was wearing during an otherwise mundane evening of television watching. My husband, a pediatrician, tried to reassure me that it felt like a benign fibroadenoma to him, and while I needed to get it checked, he didn’t think I should worry.
It was difficult not to feel at least some degree of panic as I got my first crude assessment the following day by a physician. I had to hear the words, “It’s too firm to be a cyst” pointedly spoken. I insisted that my husband believed that it felt like a non-malignant growth. This was met first by derisive laughter and then by the comment, “You can’t tell anything from just feeling it.” This was despite the irony of her ruling out the possibility of it being a cyst because of what it felt like.
It was similarly challenging to maintain my composure as I flitted from a mammography to an ultrasound and was told, “It’s definitely not a cyst. You will need to get a biopsy.” The radiologist who gave me this news weakly attempted to calm my fears by telling me that around eighty percent of biopsies turn out to be negative. “However,” he said, “I realize in your case it’s going to be zero or one hundred percent.” This little follow up witticism neutralized any iota of comfort his first statistic gave me.
A biopsy to end all biopsies was performed, with eight pieces of the tissue in question removed, and a wound they slapped a naked ice pack on that would not stop bleeding until I applied some serious gauze and pressure. The significance of this didn’t occur to me until later, when I realized that tumors encapsulate themselves in blood vessels.
Three days later, I visited my primary care physician to get the results of the procedure. My husband had accompanied me, and later told me that he knew what the verdict was by just looking at the doctor’s forlorn face as she greeted the two of us.
“The results show that you have invasive ductal carcinoma,” she said, solemnly. “It’s highly hormone-responsive, and her2 negative.” There was no pause or breath taken before she followed up with “Would you like for me to write you a prescription for ativan?” Had I not spent the past twenty some-odd years working as a researcher in a leukemia lab and was instead raised by a pack of wildebeests in the heart of Tanzania with no knowledge whatsoever of cancer, her suggestion that I load up on lorazepam told me in no uncertain terms that her news was very, very bad.
I was scheduled to meet with an oncologist and medical fellow at the same Boston-based hospital where I worked as a research scientist. It felt surreal driving there, as I had been doing every day for over two decades, and then bypassing the Dana-Farber Cancer Institute Mayer building and the fifth floor laboratory to go sit in the waiting room on the ninth floor of the Yawkey building.
I was told that there was a bit more tumor there than they wanted to see, and that I would need to have the mass shrunken in size in order to get a simple, tissue-conserving lumpectomy. It was suggested to me that I enroll in a clinical trial that would involve six months of pre-op treatment with Lupron and tamoxifen, which would force me into a premature menopause and deprive my hormone-driven tumor of estrogen. My treatment would also involve the drug palbociclib, which had been FDA approved for breast cancer in postmenopausal women. I found the biggest challenge for me was making peace with the idea of carting around a cancerous growth in my chest for a whopping six months before it could be surgically removed.
I was engaged in an otherwise light-hearted conversation with the medical fellow and was in mid sentence when the oncologist, who had been digging her fingers fiercely into my right armpit, said, “Wait… What’s this?” I am sure I very closely resembled a white faced geisha as she stepped away from me and apologized and said she had to tell me that one of my lymph nodes felt enlarged to her. She waited for the look of horror in my eyes to fade, and then calmly explained that by taking palbociclib, if I did in fact have lymph node positivity, the systemic treatment would help to nail anything that might have disseminated.
I had a series of tests at that point, including two ultrasound-guided biopsies that came as part of the clinical trial package. It was during the biopsies that the realization hit me, as I looked down at my paper bracelet and read the “MRN” patient code next to my name, that I was for the first time on the other side of the cancer coin. Up until that point, I had mechanically handled peripheral blood and bone marrow samples from leukemia patients, each one having his or her own “MRN” number.
Among other tests that I had were an MRI, which supported the oncologist’s suspicions that there was in fact an enlarged lymph node near the tumor, a fine needle biopsy that confirmed beyond a shadow of a doubt that the enlarged lymph node was positive for cancer, a genetic test that thankfully was negative for all known familial cancer-causing genes, and an oncotype DX, a genomic test that revealed my tumor to be unlikely to recur and that relieved me of the need to be treated with chemotherapy since my tumor was unlikely to benefit from it. Following each test was a terrifying phone call I would receive from the medical fellow, either giving me good news… or bad.
The home stretch was two consecutive surgeries, the first one to remove the tumor and sentinel lymph nodes, and the second to dissect and analyze neighboring axillary lymph nodes since the one sentinel lymph node had tested positive for cancer post-surgery. Fortunately, there was no cancer detected in the axillary lymph nodes, and I was able to proceed to the last phase of treatment, radiation therapy.
Following painful dot-like tattoos meant to help the technician precisely line up the treatment fields, I endured six weeks of daily undressing and dressing in hospital gowns and getting radiotherapy. I finally made it to graduation day.
I look back on the past year almost as if it were a dream. If it were not for the continued once daily consumption of tamoxifen tablets, shot in the rear every three months with Lupron, biannual IV infusion with the bone-strengthening drug, Zometa, and seeing the oncologist and medical fellow every few months, I’d think it really was a dream. Instead, it was a very real part of my life, and one that has given more meaning to the cancer research I have been doing for half of it. I had always known that behind every “MRN” patient code I’d read on my heparin-coated tubes of blood that I’d process for experiments, there was a real person. My appreciation of what those real people are going through, though, has deepened considerably since my own diagnosis a little over a year ago.