posted by Amy on Sep 11
When I was in Philadelphia last June I came down with pneumonia and ended up spending 28 hours in the ER. They gave me IV antibiotics and pain killers, monitored my progress, and sent me home with a week’s supply of pill versions of the two antibiotics they’d been putting in the IV. I returned to Denver, recovered from the pneumonia (or so I thought) and went on about my business.
Then one night when I went to bed I felt something like strained muscles on the right side of my back, over the rib cage. I thought, “What did I do to pull muscles on just one side of my back?” In the morning I realized it was a milder version of the pain I had when the pneumonia first flared up. I called my primary care provider and explained I had recently been in the ER with pneumonia and thought it might be coming back. The person answering the phone offered me an appointment two days later. I said, “Do you really think it’s a good idea for me to wait two days to find out if I have pneumonia again?” She said there was nothing she could do. I guess primary care providers no longer keep open slots in their schedules for patient needing urgent care. Instead you have to go to one of those new “doc in a box” places that don’t know you, don’t have your records, and may not be covered by your insurance. Or you go the ER.
“Lucky” for me I’m a cancer patient, so I called my oncologist’s office, and they got me in within the hour. The nurse practitioner put me back on the same two antibiotics, this time for 10 days, and ordered a scan of my chest. While I was still taking the pills I saw my oncologist for a treatment appointment, and she extended the time period to 14 days. She also freaked me out with probing questions about whether it was actually an infection (Did I have a fever? Did I get better with antibiotics?) and a suggestion that I look into palliative care. And she said I should go consult with radiation oncology. She showed me the scan. The metastasized breast cancer in my right lung is blocking the airway. The infection is “downstream” from that, and my body can’t clear it. Radiation treatment could shrink the tumor and allow my body to defeat the bacteria that I’d been harboring for so long.
This is the first time in over five years that my stage IV cancer has directly affected my health. It was sobering.
I made an appointment with radiation oncology. The first doctor I talked to, a senior resident, asked me what I understood about why I was there. I told him. He was surprised, I think, that I had such a good grasp of it. We talked some more, about my history with cancer, my health overall, and my life. I told him we’d been getting good cancer control with chemo almost everywhere, and my lungs are the only real problem area. He talked a bit about why it’s hard to control lung tumors with chemo. In the course of that conversation he changed his mind about how much radiation I should get and what the treatment goal should be. He said, “You look really great. You don’t look like you have cancer. We were going to do a short course just to shrink the tumor temporarily, but, though I have to get my attending physician to agree, I think maybe we can get rid of it.” I told him I’d been wondering for at least two years about local treatment for my lungs, and I was all for it. His boss agreed. They listened to my lungs and said the lower right lung was blocked again. I saw my medical oncologist later that week, and she prescribed another 10 days of antibiotics.
The next week I went in for a preparatory appointment where they made a “cradle” for me to lie in and gave me some tiny tattoos on my abdomen so I can be lined up in exactly the same position every time. They also did imaging so they could do 3-D modelling to plan where to aim the radiation. About ten days later I had my first radiation treatment. I have had four of the first six daily (Monday through Friday) sessions. After I’ve had six there will be a six-day break. Then I’ll go in for further imaging, and be scheduled for another six treatments at a higher dose. The reason for that is that initially it’s hard to tell cancer from infection. It’s hoped that there will be less cancer and less infection after the first round, so the radiation can be focused more precisely on the cancer. So far I’m tolerating it well, with few side effects. And my symptoms are diminishing.
The other day I had a thought. If local treatment is a good idea now, after a trip to the ER and walking around with a chronic bacterial infection for two and a half months, wouldn’t it have been an even better idea back in March, when a scan showed I had no detectable cancer in my body except in my lungs, and the cancer there was getting more active?
I think what is needed here is a more robust definition of “palliative intent.” Since my cancer is not curable, my treatment goal is “palliative:” to keep me as comfortable and healthy as possible, and to enable me as much as possible to live the kind of life I want for the time I have left. It seems to me that there is a lot of overlap between “palliative” and “curative” care. This situation is a perfect example. Getting rid of the cancer in my lungs with a proven, relatively low-risk therapy, even if it comes back later, is much better than sitting by and watching it grow, and letting it cause consequences like pneumonia. I have been getting cancer drugs continuously for over five years. They must be doing some good in my lungs, because I’m still alive, but it obviously hasn’t been ideal. Six months ago I was half a year younger and less sick. If I’m a good candidate for a relatively aggressive treatment plan now, then it was all the more so then.
I’m going to have a chat about this with my oncologist.