Fear of Recurrence

I admit to wondering how I would behave if I'd been diagnosed with an earlier stage of breast cancer rather than de novo (from the start) stage 4 (metastatic) breast cancer. Would I have been thrilled to "ring the bell" and move on without a thought about any cancer recurrence? Would any ache or pain have prompted concerns about aging, rather than cancer progression? I don't know. That's the bare truth. But as someone with metastatic breast cancer, I can understand why many women and men diagnosed with earlier stages of the disease continue to fear cancer, worry about the effects of their past treatments and feel as though they are waiting for the proverbial other shoe to drop.

I can understand because it is a perfectly reasonable fear. Estimates for metastatic recurrence in "cured" breast cancer range between 20 and 30 percent, and 75 percent of patients with metastatic breast cancer had been diagnosed and treated for earlier stage disease. So, it is a disservice when friends, family and doctors talk about whether or not women, in particular, are overreacting to a breast cancer diagnosis — even if the patient has had a successful treatment result. Knowing the facts can help an early-stage survivor better understand how important it is to remain vigilant about the disease and to support herself if others disregard or seek to diminish her concerns.

I know many early-stage survivors, most importantly my own mother, and I would never want them to live the sort of life that a person with metastatic disease can face, with sometimes crippling fear, anxiety and a profound sense of loss. That said, I worry for my friends who aren't armed with facts and knowledge about recurrence, who might ignore warning signs and decide to forgo scheduled appointments. Of course, while the recurrence statistics indicate we have a long way to go to make breast cancer the disease that feel-good stories perpetuate, the majority of early-stage patients won't have metastatic recurrence. However, if these women and men received standard care, including chemotherapy, hormone inhibitors, radiation and/or surgery, they very likely have side effects that can persist well past the final treatment. Lymphedema, peripheral neuropathy, cognitive effects, premature menopause, osteoporosis — these and more demand attention from patients and doctors both for continued care and for the psychological effects of living with long-term impacts of a serious illness.

Unfortunately, because we don't yet understand how to permanently stop, reverse, cure metastasis, it is dangerous to encourage women and men to ignore the facts in order to live without fear of cancer. It is equally diminishing to downplay the serious side effects, mental and physical, of facing a life-threatening disease. As a metastatic patient, I know it is possible to move fear from something debilitating to something that informs my decisions. But it is not easy. When I am fearful, I admit it, I've learned to name it, and I try to let it just be another emotion I feel in a life full of many emotions. When I was feeling overwhelmed and lost about a year after my diagnosis, my first step was to speak with a trained counselor, who offered suggestions and also pointed out that I'd stopped activities that had brought me a sense of peace (I am eternally grateful for her probing questions that reminded me of past successes).

Getting help because of anxiety or fear is not a last-report option. Addressing mental health is a first step, and should be accompanied by an honest conversation with your oncologist about your care going forward. Talk about specific known risks for you, reminders of how to conduct a self-exam regardless of the treatment you've received; what risks/side effects are present due to your treatment; the importance of scheduled tests and scans in monitoring your care; and any other issues that you are confronting. Ongoing concern about cancer risk and effects from treatment are also addressed seriously by this publication and by many organizations. Living Beyond Breast Cancer and Share Cancer Support, for example, have good advice on their websites and offer support through webinars, phone support groups and articles that can help survivors.

If you are a struggling breast cancer survivor, I urge you to not be ashamed. It is a responsible person who is aware of real risks, and there are very real risks for many former breast cancer patients. A responsible and informed person will take their care seriously.