As expected, this installment won’t be any more cheerful than the last. I’m writing this account for two reasons, first so that I have a way to deal with my emotions as I have to deal with what’s going on with my wife, my role as the supportive spouse, and the role as parent of a teenager facing the real prospect that he will lose his mother in the next several months. The second reason is in case somebody else finds this account and may be going thru the same cancer in their family.
I would have written sooner but the doctors found ways of delaying the PET scan and coming up with a treatment plan—a plan that while formulated still lacks a start date.
It’s now been about three weeks since the initial diagnosis. In that time, my wife has developed much more difficulty in chewing food since it keeps getting caught on the tumor. Clearly the tumor continues to grow.
The PET scan results were emailed to us and the doctor simultaneously just a few hours after the procedure. The tumor is in my wife’s esophagus just above the stomach. It is 40 v 27 mm in the axial plane (left and right) and 60 mm in craniocaudal extent (up and down). This translates to 1.57 by 1 by 2.36 inches. The cancer was found in only one location and thus excludes a stage 4 diagnosis.
Per several medical studies that I’ve read on the Internet, the over/under on tumor size for esophageal cancer is 3 cm (or 30 mm) in height. Under 3 cm, the odds are much better for survival. Over 3 cm, the odds are markedly worse. Per one study that did three divisions, under 3 cm, 3 to 6 cm, and over 6 cm; the numbers are even worse over 6 cm. This is regardless of stage of the cancer.
The difference between stage 2 and 3 for cancer in this situation is a matter of how many layers of esophageal tissue that the cancer has penetrated. More superficial is stage 2 and more layers containing cancer is stage 3. Given the size of the tumor, I think it’s stage 3, but the doctor won’t commit to saying that. The doctor said that the treatment is the same so why does it matter? As an aside, the doctor capable of making the determination is on vacation so waiting for the endoscopy ultrasound would cause even more delays in treatment.
Oh, the treatment is six weeks of daily radiation and weekly chemotherapy. This will be followed by surgery to remove the cancerous area. Per Doctor Google, as my wife calls the Internet, the surgery portion for this type of cancer is pure butchery. When I think about this treatment plan, I have a mental picture of Star Trek’s Dr. McCoy (Deforest Kelly) mumbling about the damn primitive 20th Century butchers.
Besides waiting to get a start date for treatment, we are waiting to be contacted by a “nurse navigator”. Apparently, this nurse will be our go-to person and point of contact to guide us thru the maze of cancer treatment. My sister says there is also a similar person whose job is to guide you thru the financial and insurance obstacles necessary to get treatment.
After writing this draft we did get more info on the treatment plan from a “clinical nurse navigator”. Also, and I don’t know if its just because its August or it’s a Covid thing, but the radiologist assigned my wife’s treatment is on vacation and thus we are experiencing another delay as we wait for him to return. Ditto for the surgeon. Additionally, due to Labor Day being during the first full week of September, we may be pushed back another week because they want chemo on Mondays (of course they have Monday holidays off). Thus, we are probably looking at another three-week delay before any treatment will begin. Hurry up and wait may be monotonous for military life but for this type of cancer, its just more time for it to grow and spread, two things that make it even more life threatening. I think the doctors should be allowed vacation but the fact that their workload seems to freeze when that happens is concerning. Sometimes it feels like our emergency is not their problem. I’ll post more as things develop further.