Those of us who are forever patients are scanned all the time. We lovingly/sarcastically/mournfully call this process “scan, treat, repeat.” Because of these regular scans, things that would never have been known about the interior workings of our bodies are known and become a potential issue, at least inside my head. I can’t say that I’ve gotten better at dealing with these extra weird things in the last 4 years but at least I don’t always immediately jump to “it’s a met” and dwell there too much; actually, for the record, I still do that.
Enter a lung opacity in my right lung, 1.6 cm x 1.6 cm.
This lung opacity, which is likely filled with fluid and has bubbles in it (a/k/a cavitations), showed up on my March, 2021 PET scan and caused some consternation. The consensus between my medical oncologist and the radiation oncologist who was then treating the pesky pelvic met was that it was no big deal and a chest CT was ordered for mid-May to watch it.
This whole watch and wait thing sucks.
The Chest CT in mid-May showed the same opacity had gotten smaller and was measuring 1.5 cm x 1.5 cm. Knowing that it was still there freaked me out a bit and so I asked for a referral to a pulmonologist to make sure we didn’t need to biopsy the opacity or do something else like antibiotics since one of the options suggested by the radiologist was that it could be an infection.
And yet, I have no symptoms — I suppose it is always possible that a symptom is masked by all of the other things I deal with every day, but all of the expected symptoms when there is an infection are simply not present. I now have yet another doctor, one who has been leading the charge with regard to treating COVID patients in South Florida. It is ironic to think about all those years when I only had my gynecologist that I saw once a year. Now I have a doctor for nearly every part of my body it seems.
So the new pulmonologist is super experienced and has been a colleague of my medical oncologist for a long time, in fact she gave me flowers to take to him during my first appointment, which was a great way to start out a relationship with a new doctor. He looked at my scans, did a physical exam, and talked through the options with me. He treated me as if I had a brain, was involved in my care, and is the boss, which is my preference. One good thing is that he was able to answer definitively (as definitively as is possible) that the opacity isn’t COVID or COVID vaccine related.
The consensus is still to wait, to watch, and to potentially biopsy the small area if I show some symptoms. Again, I say boo to this watch and wait thing. I do understand the risks of any procedure on my body now that I’ve been immunocompromised for 4 years and filling my body with all kind of toxic medications for that same amount of time. From what I understand, if it is an infection and my body isn’t able to handle it, then the antibiotics that I’d need to take to overcome the fact that the opacity is now “walled off” from the rest of my lungs are pretty heavy duty and would have to be prescribed for a long time period.
But at the same time as we were investigating this lung opacity, I now have a surgery scheduled on my jaw. I’d written previously about the affects of taking the bisphosphonate, Zometa, for years and the diagnosis of Bisphosphonate Induced Osteonecrosis of the Jaw (BIONJ) and you can read about that here. The hole in my mouth from losing tooth #18, a molar, has been causing ongoing issues. The gum inside the hole is super delicate and bleeds a lot; I get lots of things, usually food, stuck down in the hole; and caring for my mouth has become increasingly painful. So, my oral surgeon is going to clean out and repair the hole; actually fill it in with fat in my mouth and then stitch it closed.
Thinking about having the pain and irritation of this hole addressed is a pretty big deal.
I am reminded of how often a medical decision isn’t just about the medicine. My new doc, the pulmonologist, said he doesn’t treat the scans, he treats the person. It’s good to hear that from a doctor, that they aren’t just looking at how I present on paper, but also looking at me, at my life, at my activity level, and my quality of life.
My quality of life has taken a pretty big hit with the jaw issues. It’s been just about a year since I was diagnosed and each element of the experience with BIONJ has been pretty negative. I’ve adjusted each time and done my best, but the trajectory of those adjustments have been more and more negative. Knowing that there is a potential fix (with it’s own risks, of course) is huge.
And so, that’s the update. There are always so many moving parts in this living with cancer thing and every time I think I’ve gotten things under control, something else is added to the mix.