posted by Amy on Mar 28
I live in three-month intervals between PET scans. When I get a “good” scan I can quit worrying and go back to pretending I’m perfectly healthy. My latest scan showed that my cancer is stable: no new lesions, and not a whole lot of change in the size or glucose avidity of the areas we’ve been watching. That’s excellent and happy news.
I was worried about this scan because just a couple of weeks before I went in to get it I began getting markedly more winded when climbing stairs or hills. Admittedly I’m overweight and out of shape, but the change was sudden, and came on for no apparent reason. I was also experiencing unusual levels of fatigue. And the voice production problem I’ve been having for about 16 months was getting worse. Sometimes while talking or singing I run out of air abruptly, and the sound cuts out. That was an acute problem a year ago and had gotten quite a bit better, until recently.
About a month before the scan I went to a cabin in Vermont for the weekend. It was a lovely retreat, but there was a lot of wood smoke, and I’m allergic to smoke. Then two weeks before the scan I spent three nights and four days in a building that has what I assume is mold contamination. I am extremely sensitive to mold, and I had a severe histamine reaction. My nose ran like a faucet. My head hurt, my body ached, I was exhausted, and I was coughing and congested.
I had the scan on March 20 and got the results on March 23. The report said that an area in the lower lobe of my left lung had collapsed because of pressure from the inflamed tissue in that area. Ah! A collapsed lung! That could explain the breathing and voice production problems.
The December scan report was the first one to label the inflamed areas in my lower lungs as “neoplasms,” and the first to describe “atelectasis” in the lung. When I read that report I emailed my oncologist and her assistant to say,
As thrilled as I am overall with my latest PET report, reading it reminds me that there is still some unfinished business with the pneumonia, interstitial lung disease, pneumonitis, or whatever you want to call it in the lower lobes of my lungs. This radiologist calls them “neoplasms” and concludes that it’s a tumor causing the atelectasis. He might be right, but he’s not basing that on a definitive diagnosis. As Dr. W said about a year ago, we’re treating an image.
I think I should have a workup done by a pulmonologist (one who doesn’t simply assume he/she knows what it is without investigating). That inflammation might be a chronic infection. Even if it’s cancer, given the good responses in other parts of my body, maybe we should think about local treatment. And in any case I’d like to have a plan for clearing out the goo and reducing or stopping the coughing.
Although my oncologist responded, “I agree,” nothing happened. When I met with her assistant on March 23 to talk about the next scan report I again said I wanted to be referred to a pulmonologist. I said my breathing had gotten worse, and I was experiencing fatigue. I said I was concerned about my collapsed lung. She said she’d talk to Dr. W and get back to me, but she didn’t. She also pushed back on my idea about local treatment for the cancer. She said that isn’t done with Stage IV cancer. I told her I know there is research showing that surgical removal of lung metastases prolongs survival. The next day I sent Dr. W a follow-up email that said,
I want to preserve lung function and breathe better, cough less. That may involve treating the inflammation and/or blocked airways. That might entail physical therapy. That might involve some kind of local treatment of cancer in my lower lobes. We don’t actually know what all is going on. . . . [but we do know that] (a) all the cancer drugs I’ve been on can cause lung damage (and so can GERD), (b) Kadcyla seems to have been the hardest on me, and the other side effects it caused are only now resolving, over a year after I quit taking it, and (c) it’s possible I have some other, or additional, disease or condition that’s causing (or exacerbating) the pneumonitis besides cancer.
I went to my primary care provider and got a referral to a pulmonologist. She cautioned me that it might not be possible to “fix” whatever the problem is. I said I understand that, but since we don’t really know for sure what the problem is, it is irresponsible to conclude that it’s not fixable. In any event, I am entitled to palliative care. I then called and scheduled an appointment for March 30 in the pulmonolgy department of the hospital where I am being treated for cancer.
In the meantime, I Googled atelectasis and learned that it can be helpful to: sit up straight, breathe deeply, and cough deeply. I also read something that made me decide to try periodically taking a deep breath and then holding it while thumping with my fist all around my ribcage on the left side. I do this “thumping” when I notice my exhales have become “ragged” or when I have a voice production problem. It usually makes me cough up some goo. My yoga teacher also suggested things I can do to improve my posture and my core strength, to keep from compressing my lungs.
Whether from those efforts or just because I’m farther out from the last allergic reaction, I am already getting better. My ability to climb stairs without stopping to catch my breath has returned. (That’s especially important because to get from the trolley to my front door I have to climb 93 steep stairs.) More dramatically, my singing is the best it’s been in over a year. My voice is stronger and clearer, it’s not cutting out, and I’m more easily hitting the high notes.
I don’t think Dr. W has been stonewalling me on this issue. I just think she’s too busy with her other work. But this is not the first time I’ve noticed that I’m far more interested in my health than anyone else is. I don’t find that scandalous or surprising, and I’m good at looking out for my own interests. But what about people who don’t have three college degrees or who have been acculturated to defer to and obey people in white coats?
With the internet it’s both easier and harder to be one’s own advocate now than it used to be. On the plus side, there’s a lot of good information, such as the article from the Mayo Clinic that I found about atelectasis. On the other hand, there is every sort of charlatan, flake, con artist, conspiracy theorist and snake oil salesperson on the web, and the stuff they put up is totally unfiltered and unregulated. Health care professionals probably hear all kinds of wacky things that patients found online, and no doubt get tired of debunking it all.
I did get just the slightest hint from both the oncologist’s assistant and my own primary care provider (a Nurse Practitioner) that they think I might be in denial. I’m not. I know I have Stage IV breast cancer. I know I’m most likely going to die from it eventually. But that doesn’t mean I shouldn’t keep trying for the best possible quality of life I can have. I’m not alone in my assessment. Dr. W has also expressed puzzlement about what’s going on and has shown interest in getting more information.
A PET scan is a good but blunt tool. It shows where there is inflammation, but it can’t distinguish between different kinds of inflammation. For example, I have a nodule on one side of my thyroid that also lights up on PET scans. It has been biopsied and found to be benign, yet it displays glucose avidity that “waxes and wanes,” to quote one radiologist. When, two years ago, I asked to have a biopsy of the left lower lung lobe, the cancer board originally said no, because it didn’t look like cancer. Then they agreed. The biopsy was positive, but the report said the cancer cells were “scant.” I know people shouldn’t go around getting biopsies willy-nilly, but I think it might be time to revisit that question.
In the meantime, I’ll keep working on my breathing, and hoping for the best.