Janet, who has been diagnosed with Stage IV breast cancer, and David, her husband and caregiver, were kind enough to brave a rainstorm for our conversation on an otherwise quiet Sunday morning.
In May 2010, Janet found a mass in her breast. She went to her regular doctor and was sent for a mammogram and sonogram. Both tests showed up negative, and Janet was advised that it was just a cyst and told “not to worry”.
When Janet told her version of this story to David and me later, she pointed out that the moment she knew something was wrong was when she was walking with her sons in June 2010 and realized that she couldn’t physically keep up. In fact, her breathing was much too heavy for just simply walking. By that time, Janet’s doctors had been keeping an eye on her enlarged aorta for years, which had nothing to do with cancer but which prevented Janet from pursuing bariatric surgery to lose weight. Janet, a survivor of endometrial cancer and bladder cancer, was seeing a pulmonologist to follow a “ground glass opacity” in the left lung that showed up on a scan to check on the aorta. He noted a pulmonary effusion on a follow-up scan and felt that it was causing Janet’s difficulty breathing while walking. The doctor found that Janet’s lungs were actually full of fluid.
The doctor took over a liter of fluid out of Janet’s lungs, and the following month, another liter. This symptom was definitely a red flag for Janet and David, but the doctors were unable to tell them exactly what the cause was despite extensive tests. Janet’s primary care provider was still concerned and sent her to a thoracic surgeon to consider a lung biopsy. He felt that this was not warranted and the nodules were too small to be tested. About two months later, Janet discovered that one of her nipples had inverted, which is a symptom of breast cancer. She was sent for a mammogram at a different cancer center and several suspicious areas were found. A breast biopsy soon after was positive for mucinous breast cancer, which often is hard to find on mammograms. Because of the unexplained pleural effusions, a PET scan was ordered which showed activity in the breast, lymph nodes, and lungs. A lung biopsy was ordered for March 11, 2011, which was coincidentally Janet’s 62nd birthday. The biopsy came back positive for breast cancer.
When Janet and David finished telling me about this ordeal, Janet said, “So, we weren’t expecting to be here!” Her enthusiasm for life and appreciation for her health was obvious as she and David told me what they had been through in the last five years. They then shared their longer history together. The couple met at Cornell when they were lab partners during their undergraduate years. They each went on to get their PhD in chemistry. In addition, they recently celebrated their 46th anniversary. “We’re looking to fifty,” David remarked, and Janet added with excitement, “The first time I was willing to say that was yesterday.”
After the diagnosis of Stage IV breast cancer, which was metastatic for a year, Janet expected to only live for a year and a half, or perhaps, if she was lucky, even two years. However, she received the diagnosis in 2011 and has felt relatively healthy throughout the last six years.
When I asked Janet how that diagnosis affected her, however, she declared, “I was just pissed!” She explicated, “for one thing, it was my third cancer, and I felt that because I had regular mammograms, and had been under constant doctor’s care, the thought that it would be diagnosed at Stage IV, it was like someone is not doing his job! But apparently the kind of cancer I have is mucinous, it’s very rare. Less than 5% of cancers are [mucinous] anyhow, and it is known for not showing up well on mammograms. Often, as in my case, it did not show up on the sonogram either. But the advantage is that it almost never metastasizes, except, sometimes, it does [and mine did] … There were things about it that indicated it would be fast growing, but it hasn’t been.”
While Janet had practically no side effects to medications for four years, she has struggled with having to change drugs over the last few years and the side effects that have come along with those medications. In total, Janet has gone through four major treatment drugs. She changed treatment because of progression after the first two drugs and because of side effects after the third. The most recent drug, however, has been working well while not creating the high/low energy bursts she previously experienced with other medications.
As David and I talked about his role as a caregiver, he insisted that he did very little in the way of caring for Janet. However, as our interview continued, it became apparent that David has played a role that has assisted Janet with what he sees as small things but which have made an enormous difference to Janet. For example, David drives her to appointments and listens carefully to the conversations between Janet and her doctors, so that he can help her respond to their questions and remember what they said later on. Of this, Janet noted, “It’s important so you don’t feel quite so outnumbered… I really do need someone there who is hearing what I’m hearing and seeing what I’m seeing, and to remind me what I promised to do.”
Janet’s experience spoke to the ways that women face specific challenges with negotiating cancer treatment. She felt more comfortable with female doctors, but for a while her insurance would not cover visits with the female doctor who she wanted to see. Janet had to persistently advocate for herself. She frequently insisted that symptoms be looked into and thoroughly investigated, even when doctors shrugged off those details. Her vigilance helped her to get second opinions which, particularly in the case of diagnosing her breast cancer, were essential to her treatment. Janet mentioned that by speaking with other women, particularly friends in Texas, she found that the culture of a geographic region can also play a part in whether or not women are willing to speak up to doctors. Her brother Christopher advised that she “channel her inner New Yorker” to advocate for the best care possible.
Fortunately, Janet now sees a female doctor who is open to new ideas about how to treat patients. For instance, when Janet brought in research articles to suggest particular treatments which are not yet the standard, her doctor has tried these new avenues with Janet. In addition, Janet has been forward with insurance companies in order to straighten out inaccurate bills. She advised that for many insurance companies, “no” does not necessarily mean no, but that there is often some leeway in order to get payments straightened out. Persistence is a must, which is usually taxing emotionally and time-wise for cancer patients. “People don’t realize when you do things wrong and you send them to a cancer patient, it can be devastating,” Janet said, referencing both the inaccurate diagnoses and insurance bills she has received over the last five years.
While Janet has been doing remarkably well, she also fears what the next steps will be. “I guess what I’m concerned about is that from this point on, every medication is going to have worse side effects, but then David may get to do some caregiving.” She confides, “At this point, my hair is thinning … if I go bald, suddenly people will think of me as a person with cancer.” In the face of these concerns, Janet still seems upbeat. Having cancer has also opened up new doors for Janet, which she and David readily acknowledge. After she was diagnosed and David retired a year earlier than expected, they moved from Fort Worth to Ithaca. Janet had a wonderful experience with the cancer center in Texas, which led her to attending the Cancer Resource Center in Ithaca once they relocated. She was particularly drawn into the support groups at the CRC. Janet and David also talked about attending the cancer seminars presented by Cornell students who intend to focus their careers on cancer research and treatment. “We’ve been to a lot of those seminars”, Janet explained, “and it’s not a question of curing cancer, [it’s that] I want them to cure my cancer, which is apparently different from everyone else’s cancer. It’s nice to know there are all these bright people working on it.”
Janet and David’s love for the outdoors was apparent throughout our conversation, and both are avid walkers and bikers. In addition, the pair recently accomplished their goal of traveling to New Zealand and Australia. Towards the end of our conversation, Janet reflected on what it’s like to expect to live until eighty or ninety, and then to have that plan changed and be able to monetarily afford to live in the moment. Certainly, living with cancer has allowed them to seize the moment and do things that the couple would have normally put off for another decade or more. Janet laughed as she said, “If I live to be ninety years old, I’ll write a book about how I survived thirty years with metastatic breast cancer!”
Written by Sarah Brewer