Posted 12 February 2016
One of the hard things about having cancer is the uncertainty about what the future holds.
Of course, life is uncertain for everyone. At any moment of any day, something can happen that changes — or ends — your life.
But having a cancer that is considered incurable, as mine is, adds an immediacy that feels very different from the generalized uncertainty of life.
From the day of my diagnosis, the message, both explicit and implied, was that this cancer was something I was unlikely to survive.
In the language of cancer treatment, my chemotherapy is palliative, not curative; the goal is remission, not cure. Cure is considered possible for intestinal cancer only with surgery, and they won’t do surgery once a cancer has metastasized (as mine has).
For some cancers, such as testicular cancer and Hodgkin’s lymphoma, chemo is now curative for many patients. But for metastasized intestinal or pancreatic cancer, chemo typically provides, at best, only a period of remission following treatment.
I have duodenal adenocarcinoma (probably, see next section), which is quite rare — about 5,000 cases a year in the U.S., compared with 250,000 cases of breast cancer, 225,000 cases of lung cancer, and 50,000 cases of pancreatic cancer.
In contrast, the National Cancer Institute (NCI) estimates that there were 9,410 new cases of duodenal cancer (including all types) in 2015, as well as 1,260 deaths.
Only about half of duodenal cancers are adenocarcinoma, as I have, which is a cancer that begins in cells that make and release mucus and other fluids. The statistics, unfortunately, lump duodenal adenocarcinoma together with the other half of duodenal cancers, made up of sarcoma, carcinoid tumor, stromal tumor, and lymphoma.
Assuming that the various types of duodenal cancer are equally reflected in the data, about 650 people will die this year from duodenal adenocarcinoma. That’s 0.1% of the almost 600,000 people expected to die from cancer this year.
Because it is uncommon, there is very limited data about duodenal adenocarcinoma, are there are no specific treatments. I am being treated as if I had colon cancer, because that is the closest thing for which there is a treatment protocol.
My pathology reports first said pancreatic or duodenal, probably pancreatic. After that, they settled on duodenal, but it has never been clear to me what degree of confidence anyone has in this diagnosis.
For pancreatic cancer, the most deadly of all common cancers, the NCI estimates that there were 48,960 new cases in 2015, along with 40,560 deaths.
My tumors have responded to the chemo more than is usually seen with pancreatic cancer, says my oncologist, and this reinforces the diagnosis of duodenal over pancreatic. But it still seems disturbingly vague to me.
After cycle 6, I’ll be getting another CT, and I plan to have that one read by multiple radiologists. I’ve never felt that the CT interpretations, which are done by someone I never meet and have no way to contact, were as clear, thoughtful or helpful as they could be.
So How Long Do I Have?
Early on, when I had chronic pain and it was deemed likely to be pancreatic cancer, it felt like I had only a few months to live. Now, having had the pain eliminated by the biliary stent and the tumors responding well to the chemo, I feel like I’ll live a year, maybe a few years if I’m lucky, assuming that there’s no breakthrough treatments.
My two best hopes for more than a couple years are either to be one of those rare cases that goes into remission and doesn’t recur, or for a new drug to be tested in a clinical trial that works for my type of cancer — in time for me.
Statistics can be dangerous, but I am someone who wants data. So I’ve gone looking for the best data I can find on survival rates for different types of cancer.
What I’ve found is that the data isn’t very good — not just in terms of the results that it shows, but in terms of the usefulness of the data. Most fundamentally, it is too old.
At cancer.org, the American Cancer Society’s site, the 5-year survival for stage 4 duodenal cancer is shown as a dismal 5%.
This data, however, turns out to be based on people diagnosed 13 to 17 years ago! That is long before any of the current treatments were in use.
For stage 4 duodenal cancer, the NCI reports a 5-year survival rate of 41.2%. This data covers people treated through 2010, so it is much more recent than the ACS data. Still, it stops short of when widespread treatment with FOLFIRINOX began.
Because pancreatic cancer is much more common, there is much more data about it. Unfortunately, the results are almost uniformly dismal. In comparison to the 41.2% rate that I quoted above for duodenal cancer, for pancreatic cancer that has already metastasized upon diagnosis (i.e., stage 4), the 5-year survival rate is 2.4%. That’s about as bad as it gets.
Stats are Years Behind Treatments
Five-year survival numbers are intriguing, mostly because 5 years seems like a very long time from my current perspective. But these statistics have at least two serious flaws.
The biggest issue is that the 5-year results are from people who began treatment at least 6 or 7 years (and generally much longer) ago.
The FOLFIRINOX chemo regimen, which I am on, was not in widespread use until at least 2012, well outside the window for all of the published data. It is now the standard treatment for colon cancer.
FOLFIRINOX was also the first chemo regimen to show real, if modest, progress for pancreatic cancer, so it was a compelling choice for my chemotherapy.
The study that demonstrated these results was published in 2011. This study triggered the widespread use of FOLFIRINOX. That was just barely five years ago, and it will take at least another year or two for someone to compile and publish results. So none of the available 5-year survival data reflects the current treatment regimen, and it won’t for two or three more years to come.
Individuals Aren’t Statistics
The other giant issue with any such statistic is that it applies to a population, not to an individual. I am both younger and healthier than many patients. I have good insurance, a great medical team, an incredibly supportive spouse, a comfortable home, and a pretty relaxed life (since my forced semi-retirement; the prior 4 decades or so weren’t so relaxed).
One can never tell what the factors are that matter, but it seems reasonable to assume I have a good shot at doing better than average. Whether the 5-year survival rate is 2.4% or 42.1%, it is not 0%; some people make it for five years.
What accounts for the wide variation in response, from one individual to another, to treatment? As best I can tell, having read quite a bit and talked with several oncologists, no one knows.
For me, having goals and things that I am passionate about, as well as hope for the future, are important — and are the subject of an upcoming post.
Likelihood of Recurrence
The ultimate key factor in the survivability of a particular type of cancer is often the likelihood of recurrence, when the tumor reappears in the same or a different location some time after chemo is stopped.
For my type of cancer (colon-like or pancreas-like), the presumption is that the rate of recurrence is virtually 100%, over a matter of months or a year or two. So if all goes well with the chemo, I will be able to stop at some point and have a period of remission — but the threat of recurrence will always be right there.
Sometimes the same chemo regimen will work a second time, when there is a recurrence; other times the cancer will have become resistant. Then there will be other treatments to try, and decisions to make about at what point to stop.
Back to the Moment
But I am getting ahead of myself. Today, on just the second day after completing cycle 5 chemo, I feel pretty good! I am excited about the warm weather expected for the weekend, and I’m enjoying watching the beginnings of spring in the garden.