Scans and “Scanxiety”

Metastatic cancer patients, regardless of the type of cancer they have, quickly become used to the routine of “scan, treat, repeat.” On some interval, usually 3 months, you have CT, bone, and/ or PET scans that show whether a drug regimen is working. If it is (or if the results are stable), you continue until the cancer starts growing again. If not—you move on to something else, for as long as something else acceptable is available and tolerable. The time around these scans is usually quite nerve-wracking—hence the made up word known as “scanxiety.”

Last week I had a brain scan and a CT scan. The brain scan showed that the radiation worked on the areas treated, and the tiny seeds in the brain itself, not in a place at the moment to cause symptoms, grew slightly. The CT scan, however, showed definitively that the drug I am currently on is not working—the spots on my liver, in particular, got larger. So I am off that drug, an oral chemotherapy, and am waiting to hear what is next—one of two clinical trials, or possibly another chemotherapy. (One of the trials involves immunotherapy, which has been successful in other forms of cancer –especially melanoma–and is now the subject of a number of trials in breast cancer as well. )

I have now had a total of eight series of scans since my diagnosis of metastatic breast cancer, and all but two have involved bad news. I have not been one of those people who hear that their cancer has shrunk dramatically, or has become invisible on the scan (No evidence of disease—doesn’t mean there is no cancer, but that it can’t be picked up on a scan).  Rather, each new drug regimen usually fails, increasingly by the first set of scans.

On some level, I realized the other day that while I’m not particularly fatalistic, I have now come to almost expect this.    The news, however disappointing it is to hear at the time, doesn’t hit me quite as hard as it did earlier in the process. The only positive in my case is that the cancer, though obviously very wily (since I go to Mass General, I joke that my cancer is so smart it got into Harvard…..) is also not particularly fast growing—for example, my liver lesions grew by only about a centimeter over more than a three month period, and the lymph nodes by much less than that. I also had a harder time on this particular drug than on previous combinations, so in a way I’m not sorry to move on.

Still, it is increasingly hard to approach the “next thing” with the same optimism I felt a year ago. Fortunately, I still feel relatively well and have options left—that’s one of the advantages of being at a state of the art center such as Mass General–but obviously, the opening is narrowing. The conventional wisdom is that as the cancer continues to morph, each treatment generally has a lower percentage chance of working than those that come before. This does not mean that the next thing can’t work, but the fact that I have cycled through so many treatments in such a short period of time is objectively not a good sign.

My main goal at the moment is to stay in balance—to neither fall into despair, nor have unrealistic hope. Probably the most difficult thing to deal with is the fact that no matter what I do, I am ultimately not in control what happens with the cancer. I am only in control of how I choose to respond to it. In a future post, I want to write about the influence of living in Asia on my reactions, as I’ve increasingly realized the degree to which I have absorbed, albeit unconsciously, a certain acceptance of the great uncertainty of life.  And so, I move on to the next thing.

3 thoughts on “Scans and “Scanxiety”

    • The content of your post reflects the difficult challenges of living with metastatic cancer. This post also reflects an optimistic view by participating in the clinical trial. I feel that you do have a balanced philosophy of life. Your emotional and physical stamina have required an amazing amount of strength. We need to be a support for your continuous strength. Love, Selena

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  1. And once again, I sit and nod. The scanxiety is real and so is the loss of control. Unfortunately, it annoys me. Thank you for your honesty and sharing what we’re all feeling…. makes one feel less alone. 😊

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