Since graduate school, when I had to buy my first computer, a pre-MS DOS machine, I have been online. No, not the internet. The internet did not exist in 1982 when I started graduate school. But leading-edge, circa 1982, online services did exist. In 1982 I would dial out to The Source, and a few years later to CompuServe, when they acquired The Source, and then in the early 1990’s the internet.
One of the things I regularly did online was research medical topics, mostly by reading medical journal articles. I was an early user of the new online repositories for medical journal articles.
As medical questions came up for me or my family, I would be the first to jump online to research the topic. Ten years after graduate school I became a volunteer EMT and did that for over five years in my local community.
Since my wife’s cancer diagnosis in September, I have read all kinds of medical research and information on retroperitoneal sarcomas. While I am no expert, I have learned a significant amount about cancer and her particular type of cancer. I tell this history to make a single point: I am a very knowledgeable medical consumer, with good instincts about cause and effect.
My wife’s cancer spread following her surgery to remove a retroperitoneal liposarcoma. Long before we knew that her cancer had spread, I remember my internal dialog when her surgeon told us, following the surgery, that her tumor had leaked over 3 liters of necrotic fluid containing microscopic cancer cells into her abdomen.
I thought, “This fluid has likely been leaking for the past few weeks. It is unlikely that the surgery was flush all this cancerous liquid and remove all the cancer cells from her abdomen. Cancer has likely made its way into her bloodstream and to other parts of her body already.” I suspected we had gotten her to the operating table too late to stop cancer from spreading.
In the days following her surgery, I tried to speak to the doctors about the impact of the necrotic fluid. I wondered why they did not order a CT scan of her lungs to look for indications of metastasize or order a prophylactic course of chemotherapy once she had recovered sufficiently.
My questions were met with a wall of protocol and smiles all marching down a singular path. There was nothing more to be done. Let her recover and bring her back in four months for a new CT scan. But the intervening four months following her surgery allowed cancer to return around her liver and throughout her retroperitoneal area and to metastasize to her lungs and retroperitoneal lymph nodes.
Today as we try to navigate the next steps in her cancer treatment I am again struggling with concern that even the top sarcoma specialists we see in the hallowed halls of a major cancer center are bound by their own insular world and established clinical processes.
When I spoke to my wife’s medical oncologist last week, a top sarcoma specialist, I asked directly was there more we could be doing? I told him that I had read that the chance of successful chemo for her particular cancer was low, (a statement he never refuted), so was there anything experimental or leading-edge we should be considering. His mantra was simply, stay the course, complete the chemo, and come back in a month for a CT scan.
I mentioned she was having increasing pain in her back and shoulder. He considered for a moment and then returned to his mantra, complete chemo, stay the course, see us in a month. I suggested a CT scan sooner. No, it was too soon for another CT scan, he said, to see if the chemo was effective. Complete chemo, stay the course, see us in a month.
Doctors speak in riddles. My wife’s oncologist did say that “if the tumor stays the same size or shrinks, we would consider that a success.” The same size? What does that mean for her prognosis? My wife is lying on the couch all day, in pain, under the control of narcotic pain killers, attended by her elderly parents. If there is really no hope, tell us. Why make her continue the chemo if she is going to die anyway? Cancer treatments are better than they once were, but they still put patients through hell.
Monday we go for a second opinion with a new sarcoma expert at another top cancer center. I am hoping that he will give us some straight answers without the deflection and smiles.