My Story | Trish M., Florida, USA
I come from a family with a lot of cancer. My mother and her mother survived endometrial cancer diagnosed in their mid-forties, only to die of kidney and duodenal cancer, respectively. My mother’s father died of stomach cancer. Since kidney cancer is relatively rare, we were stunned when my sister was diagnosed with kidney cancer at age 42. I knew the family history and was surprised that, as the oldest, I didn’t have cancer first. My mother's two brothers and their families weren't close. We wrote to J, a cousin who is a professor of public health at a medical school and told her our suspicions. Her mother had died of cancer, too. She never answered, even when her father (my mother's brother) was diagnosed with kidney cancer.
Two years later, I began spotting between periods. "Perimenopausal," my gyn nurse practitioner said. "My mother and grandmother had endometrial cancer," I said. She was not impressed. I pushed for an endometrial biopsy, and finally got one. "Hyperplasia, no malignancy. Here, take this hormone replacement, it'll help," she said. It didn't. My asthma, which had always been bad just before my period, slowly worsened until I could hardly breathe. I had severe reactions to allergy shots twice and then I stopped the shots.
After talking to the gynecologist, the nurse increased the hormones. At every visit, I reminded her that my mother and grandmother had had endometrial cancer. The spotting worsened, as did the asthma and migraine headaches. I began having a watery vaginal discharge. I asked for another endometrial biopsy. "Well," she said, "you just had one." (Three years had gone by!). She scheduled me for a transvaginal ultrasound. They "couldn't see anything" they were supposed to, but captured a bit of tissue from a polyp at my cervix. I insisted on an endometrial biopsy if the pathology report was negative. "Okay," they said, clearly patronizing me. The path report read: "endometrial adenocarcinoma." I got the endometrial biopsy. It was positive, too. The gynecologist called me paranoid when I brought up the family history. Then he asked me how old they were when diagnosed (their mid-40s). I was 50. He raised his eyebrows a bit, but said he was still not impressed. I asked for a referral to a gynecological oncologist (gyn-onc). "You're stage I," he said, "you don't need one." I insisted.
The gyn-onc was more impressed. When I asked him what the other women in my family should do, he said, "Have endometrial biopsies. If they're over 40, consider prophylactic hysterectomy." He ordered scans to check for metastases. No mets, or cancer in lymph nodes, but the cancer had gone into my cervix - stage 2b. I needed radiation treatment after my uterus and ovaries were removed. The radiation treatment left me with permanent bowel damage.
My father was diagnosed with pancreatic cancer. He died three weeks later. My father-in-law was diagnosed with his third primary, non-Hodgkin’s lymphoma. He was a survivor of skin and colon cancer.
We saw my cousin J at her father's funeral. She told us he died of prostate cancer; his kidney cancer was encapsulated and not much of a problem. This remark told us she didn't know anything about kidney cancer. "No, of course they didn't biopsy the mets," she said. "How do you know which cancer the mets came from?" I asked. No answer. It was clear that she considered my sister and I laymen who could not possibly understand medical concepts since we had no MDs or PhDs after our names.
J’s brother E called my sister. "I've got a cyst on my kidney," he told her casually. I heard you had some kinda problem like that." She gave him the names of two renal cell cancer specialists and asked him to let us know what happened. We didn’t hear back.
We found out about a study of genetic urologic cancer being done by the National Cancer Institute/National Institutes of Health (NCI/NIH). We submitted slides of the family tumors, and were accepted into the study. A month before our evaluation appointment at the NIH Clinical Center in Bethesda, my sister ended up in the local emergency room. They did a routine pre-admission chest x-ray, and it showed a lung tumor; when they looked back at a chest x-ray done a few months before, they found the tumor there, too -- now that they knew where to look. Kidney cancer often metastasizes to the lungs. The local surgeon wanted to watch this lung tumor for three months. No need for a PET scan, he said.
The NIH docs didn’t agree on the treatment of the lung tumor. They gave my sister and I whole body CT scans and she received a PET scan. The lung tumor had grown, and they found a mass in my sister’s thyroid. A thyroid biopsy showed suspicious cells, so they took out her thyroid and biopsied some slightly swollen lymph nodes at the same time. The thyroid pathology report showed papillary thyroid cancer. The lymph nodes showed no cancer. Three days after the thyroid surgery, they took out an entire lobe of her lung. The tumor was not a metastasis from kidney cancer, but was non-small cell lung cancer, a third primary.
The NIH is sure that the kidney cancer in our family is hereditary; the histology (appearance under the microscope of all the tumor cells) was the same. However, the pattern in our family was not the same as any other previously known genetic kidney cancer. "We’d like to see your brothers and the children of the uncle with kidney cancer," they said. I wrote to E. Now that the NIH was convinced we had genetic kidney cancer, he wanted to know more. He called me, and I gave him the contact person for the study. He said he would call and talk to his four sisters.
They weren’t studying endometrial cancer but were impressed enough by the family history to recommend that my sister have an endometrial biopsy in the near future, even offered to do it in the NIH Clinical Center if her doctor at home didn’t want to order it. It was negative.
My CT scan showed a kidney mass too small to call as benign or malignant. My brothers, who have not had cancer, were also both found to have very small kidney masses. Again, it was too small to call, but one brother’s mass looked a little different, a little more suspicious, on x-ray. They asked us all to have repeat CT scans in six months to see if the masses changed. Mine had not.
My teenage daughter knows the family history. She did a prize winning science fair project analyzing the inheritance (autosomal dominant) in her family tree. At the science fair, I caught three physicians actually picking up her written report and reading it. I hope that 30 some years from now, her gynecologist will take her seriously when she says, my mother, my grandmother, and my great-grandmother all had endometrial cancer before menopause.