Of Course I Worry: Living With Uncertainty Six Years After Remission

Last January, I went in for my regular biannual oncology check. When I made the appointment, I wasn’t expecting anything to happen; nothing had shown up as even potentially worrisome for several years, to the point that my oncologist had suggested at my previous visit that this one could be a tele-health call rather than an in-person visit. But follicular lymphoma - a form of blood cancer that is considered very treatable, but chronic and incurable - has a nasty habit of recurring, even after a complete response to treatment (no signs of cancer on repeated scans), and a significant passage of time. Six years after I’d been declared NED (No Evidence of Cancer - remission in non-medical terms), there was something potentially problematic on my annual CT scan. So I worry - even though it might be nothing. Even though many people don’t understand why I don’t wait and see, because it might - could easily be - nothing.

Part of the “potentially problematic” was that the radiologist who read the scan saw two enlarged lymph nodes in my right lower mesenteric region - so behind my intestines, and below my rib cage. By itself, it could be nothing. It was also open to interpretation. The radiologist noted that this was the area from which the lymphoma had grown previously - which was news to me, as I was diagnosed at stage 4, meaning it had spread throughout my body, which is not particularly unusual for follicular lymphoma, which tends to be diagnosed late; there are no tumors until the lymph nodes start clogging with cancer cells, and no symptoms. If there was an identified starting point for my cancer specifically, no one had ever mentioned it to me.

My oncologist, on the other hand, noted that there were no clear indications of lymphoma, because enlarged lymph nodes can be caused by a range of issues, the most common of which is infection. He gave me three options: to get a biopsy, to undergo a preventative course of immunotherapy, or to wait six months and get another CT scan. There are pros and cons to each one.

The biopsy would be definitive, if cancer cells were present in the sample - but there’s a fair chance that even if it is cancer, those cells would be missed by a needle biopsy. There’s also a chance that the needle would perforate the intestinal wall, or angle needed to avoid that would make it impossible to get a sample.

Immunotherapy is well-tolerated, but as with so many medications, it can be overused and the targeted cells become resistant. If this were anything but a recurrence, it wouldn’t be in my best interests to use that medication now. Then, too, I had just found out that I will eventually need to have a hip replaced for reasons unrelated to cancer, taking a medication that caused immune suppression when surgery was a near-term possibility didn’t seem like the best choice. As I found out when I met with the orthopedist a couple of weeks later, the hip replacement is inevitable but not imminent - but I didn’t know that then.

That left waiting 6 months for another scan, which is scheduled for late July. I’m still waiting. There’s been no definitive signs of recurrence - but that doesn’t prevent me from worrying. There’s nothing I can do to change things, except try to eat well and exercise, which I’d be doing anything. There are no preventatives, no supplements, no activities beyond those for general health that will have any benefit, and a fair number of options from alternative medicine sites that are potentially detrimental, if not outright harmful. So worrying won’t do any good - but that doesn’t mean I can stop worrying.

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