Unhelpful Advice I Received During Cancer

Like many people with blood cancer, my diagnosis came in a rather round-about way, due tests following a back injury that led to a breast exam, then further tests that led to diagnosis with follicular lymphoma. The gynecologist’s office took the usual measurements, which found my heart rate to be about 130 bpm, and that I had lost significant weight (due, I thought, to the muscle relaxants for the back injury) since my last doctor’s visit.

Based on what she considered the most troubling symptom (an elevated heart rate) my doctor thought I might have a blood clot in a lung, and sent me for a CT scan. It was June 2020, and this was a common side effect of COVID-19 infection. Because of the chance I might need immediate treatment for the suspected blood clot, I was told to wait by a dedicated landline in the imaging department for my doctor’s call when the scan came in.

But it wasn’t a blood clot. The scan came back “probable lymphoma, possible leukemia.”I was in shock; cancer hadn’t even been on my radar. Suddenly, my other symptoms — weight loss, sweats, and fatigue — came together in further confirming the diagnosis. A lymph node biopsy done based on the mammogram and ultrasound the gynecologist ordered, done the day before the CT scan, came back the next day, confirming follicular lymphoma. The sinus tachycardia (high heart rate) never was explained, but may have been an immune response to inflammation; it cleared up with treatment for the lymphoma.

People did their best to be supportive, but their definition of “support” wasn’t always something I felt supported by. The most unhelpful comment, by far, was variations on “At least you got a good cancer.” A less common, but equally unhelpful, comment was about the weight loss (I’d lost over 30 pounds in three months, which turned out to be a symptom), and how good I looked, so I should count that as a benefit.

Let me just say this: do not ever say either thing to someone newly diagnosed with an illness. I don’t care what the illness is, the prognosis, how well-meaning you are; trying to find the bright side of any type of illness is dismissive of the issues facing the patient.I have never felt so uncomfortable and unheard as I did when people made such comments, and then went on to tell me about their own (or someone else’s) experiences with something that they considered worse. It probably was worse, but that’s not the point. My world was falling apart, and, with (no doubt) the best of intentions, people kept telling me how much worse it could be, and that I should be grateful that it wasn’t. Later, people who hadn’t seen me since before treatment told me how good I looked, and sounded surprised about it, which was also not reassuring.

Today, I can understand why people might think that such comments might be supportive; my friend’s daughter certainly had a much more difficult time with treatment for Ewing’s sarcoma than I’ve had so far with follicular lymphoma — but “less bad” isn’t really a great comparison, and not at all helpful or reassuring. Please, just don’t go there. If you want to be supportive, show up. Call. Email. Be there, physically if you can, and if the person’s medical state allows visitors, but be there for them however is appropriate and possible. Listen. Run errands if needed. Walk the dog. But please — please — don’t tell them that what happened was better than it could have been, because that just really doesn’t help.

This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.

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