My most popular post last year was the housekeeping post I wrote in October 2011 to explain my diagnosis in further detail. This post, as well as my About page and Updates page, were getting a little out-of-date. So I deleted my Updates page, made my About page more in-date, and i’m writing this post to replace my prior housekeeping post (now called “housekeeping: part 1”).
It occurred to me that because my posts are so vague, it’s difficult for my readers to tell what is going on with my treatment. I don’t like to give too much detail because A) it’s not necessarily my intention to give treatment advice to fellow pancreatic neuroendocrine cancer patients–everyone’s case is different–and also because B) this blog is primarily a place for me to talk about what it’s like to live with cancer as a 20-something year-old woman. The details about my diagnosis and treatments are almost secondary to the fact that i’m trying to live my life with this disease. Still, I would be curious if I were you. So I invite you to read on and to ask me questions via email or in the comments.
My boyfriend tells me that the most frequent question he gets when he tells people is: “Wait–she still has cancer?” Yes, if you haven’t gathered that already, I still have cancer. It is possible to have cancer for many years and not die from it or get cured. I started feeling symptoms almost three years ago and I was diagnosed two years and two months ago, but I have probably had it for many more years than that. When I was diagnosed I had a primary tumor in my pancreas and metastasis in my liver. I had surgery two years ago to remove many of my tumors but there are still some left in my liver.
My cancer is considered chronic. It is something the doctors say I can live with for a long time (I am a liver), but at the moment there is no treatment that is likely to send it into remission. When I am not actively treating it, it is growing, so over the past two years I have tried three different oral chemotherapy regimens in an effort to keep it from growing and, if i’m lucky, to shrink it. One regimen didn’t work, one worked really well for over a year, and the latest worked half-heartedly for six months.
Right now my tumors are growing because i’m waiting to see what comes next. I’m starting to feel some of my early symptoms again, like nausea and the food pickiness that came with it, and the small pain that has been present off and on since last year at this time.
The timing of this post is fitting because it is a new year and it seems that I have now reached another turning point in my treatment.
Instead of my oncologists reaching for the next drug they can prescribe, they are talking more seriously about the “other” treatment options. These include the “ation” procedures I have previously mentioned (here and here). These are achieved through interventional radiology; one of my oncologists calls them “locally destructive,” meaning they target the tumors that remain in my liver with either chemo or radioactive microspheres. You may remember that liver transplant was on the table at one point. It doesn’t really seem like it’s an option anymore.
They are also talking more seriously about what seems to be the most promising of all treatments for certain types of neuroendocrine tumors (NETs): peptide receptor radionuclide therapy (called PRRT). The fact that it is not yet approved by the FDA and offered at only a few centers around the world, most of them in Europe, makes it sound even more exciting and mysterious. The fact that it is not covered by insurance makes it sound impossible, because it is expensive. But it is so promising that a lot of NET patients scrape together the money to do it and it will hopefully soon be offered at lower costs to more patients through well-funded clinical trials. I will write about this more when the time comes.
But now, for the first time since my last surgery, my doctors are talking about doing more surgery on my liver. Knowing everything I know now about surgery having already been though it once, the thought of going through it again is jarring. But if my options are that or deserted island, I will probably pick that.