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5 Reflections on Living a Long Life With Cancer

Reflections on living with cancer from a fellow traveler on this journey.

Key points

  • Sc(anxiety) is a feature, not a bug, of living with cancer.
  • Families and friends are important parts of the cancer journey, long after treatment is complete.
  • Evidence shows that having a health care team you trust is essential to quality of life post-cancer treatment.

This month marks my sixth year since being diagnosed with colorectal cancer (which I’ve written about here).

Since that initial diagnosis in August 2016, I have marked the passage of time with an additional calendar layer dictated by the doctors and nurses that were working to save my life. Initially, this calendar was quite packed and each event felt like a major turning point where I could fall off course: Days of pre-operative assessments, day of surgery, days of hospitalization, visits from the home health care nurse every three days, four weeks until the post-operative assessment, etc.

Then, once the most acute phase of my care was over, the calendar settled into one of surveillance, watching for potentially ominous changes: quarterly blood draws and doctor visits, annual colonoscopies, and—most terrifying to me—annual CT scans to look for metastases to my liver, lung, or something else that it is difficult to live without.

For five years, from August 2016 to August 2021, that was my clock. This is the first August in five years that I have not had to drink 32 ounces of a “mocha shake” (narrator note: tastes nothing like a mocha shake but will ruin frappucinos for you forever) of barium sulfate to prepare for the scan. The first August in five years when I have not felt the terror of waiting alone in the small, cold room—trying to not pass out from fear—after changing into a far-too-large hospital gown. The first August in five years I have not heard the “voice” of the incredible machine that allows my doctors to see what is otherwise impossible for them to assess until it is too late telling me to “Hold my breath ... Breathe” as radiation moves through me. The first August in five years when I have struggled to stay present and think positive as I await the call from my doctor telling me what the scan showed—which for five years was the best news a cancer patient can ask for: “No evidence of disease.”

After five years of such surveillance, the evidence (or, perhaps more cynically, the cost-savings to the health care system) that ongoing scans are worth it from a risk-benefit ratio isn’t needed. And so you get discharged from your cancer care team. Your time and how you mark it, such as it is, is yours again. In the parlance of some (I do not use nor do I like this term), you are a “survivor.”

 Jeremy Vessey/Unsplash
Past self, meet future self.
Source: Jeremy Vessey/Unsplash

And so, in recognition of that time and the lessons I’ve learned during it, I am offering five reflections on living with cancer, intended for others who are on this journey and the people who love them. This reflection embodies much of the empirical research in psycho-oncology that has developed over the past 30 years, summarized earlier this year in an editorial by David Kissane.

  1. Sc(anxiety) is a feature, not a bug, of living with cancer.

The medical profession loves jargon. The term they have coined for the intense fear that most cancer patients who have completed their treatment feel about their disease, especially during those regular blood tests and scans that make up the surveillance component of care, is “fear of cancer recurrence” (FCR), defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress.” The acronym and definition do not even remotely reflect the existential terror that I experienced whenever I would lay down for my CT scan, which bordered on depersonalization.

With the caveat that most studies of “FCR” have been limited to people who have experienced breast cancer, researchers estimate that about two-thirds of individuals report unmet needs related to fears around cancer recurrence, unmet needs regarding information about their health post-treatment, and negative expectations about their lives going forward, etc. The loudness and obtrusiveness of these existential questions (e.g., What will happen to my family if the cancer comes back? What does it mean to be a "cancer survivor"?) that only emerge after treatment is complete are a part of the journey that can be difficult to process, especially because at the beginning the entire purpose of the journey appears to be to complete treatment. But that is a false peak: completing surgery, chemotherapy, or radiation is not the true destination of the experience of living with cancer. They are simply sights along the way. Appreciating that sc(anxiety) is an expected, rational part of the journey is an important component of adjusting to living with cancer.

2. You are not going through this alone.

You are not the only one who is terrified of the cancer returning. Your partner, your parents, your children, your friends, and even your doctors are also fearful of that.

Of course, friends and families—even when they mean well—may not be able to provide the kind of support you need. You may even be angry at them for not “showing up” in the way you wanted them to. And if your relationships were challenging before cancer, they will likely also be challenging—potentially to the breaking point—after cancer.

Even if your family and friends are supporting you, it doesn’t mean you wouldn’t benefit from talking to others who know exactly what it is like to walk in your shoes. Support groups are not just for people who are in the thick of cancer treatment—they also serve to support people dealing with the aforementioned existential questions that cancer lays on your table. I only started attending support groups when I was about 12-18 months out from completing my treatment. Most of the people in my group were similarly “seasoned” in their journeys, and many of them were several years out from completing treatment.

3. Hope is a verb.

Getting a cancer diagnosis is traumatic. And we know that trauma can be harmful for mental and physical health. However, we also know that adversity can also spur incredibly meaningful personal growth, compassion for oneself and others, and deep, positive reflection and connections with others.

Research shows that factors that support such positive changes include being physically active and having a health care support team that is engaged and informative. These are modifiable determinants, and should be the focus of post-treatment cancer surveillance care. As someone who was failed by the health care system (by being misdiagnosed for nine months) before I was saved by it, I have a deep appreciation for the importance of having a health care team that sees you as a person, not a patient or a case. And if you do not have that, it may be time to fire them and find a new one.

4. There will come a day when your experience with cancer is not the first thing you think of when you wake up.

For me, that took about 65 months from the time I was diagnosed, but I am finally here.

5. Make peace with your body.

Yes, technically, your body tried to kill you. Cancer cells aren’t foreign invaders: they are your cells, with your (mutant) DNA, growing with impunity in ways and in places they shouldn’t for other parts of your body to work. And as a result, for a long time after my diagnosis I didn’t trust my body. That is to say, I believed it was still trying to kill me, even though my doctors had told me I was NED. Any moment of light-headedness when standing signaled to me that the cancer had spread to my brain. Any shortness of breath from climbing the stairs meant that it had spread to my lungs. For the first few years after my diagnosis, I lived in fear of my body, and what it was capable of.

And then, for the first time in my life, I started running. Not because my doctors told me to or because I had read that it was important for post-traumatic growth, but because—for me—running was one of the few things that helped me form connections between my (fearful) mind and my (recovering) body. I couldn’t think about how afraid I was when I was so focused on keeping my legs moving. After a year, I ran 5 miles, which was farther than I had ever thought possible. The next year I ran a half-marathon. And then a second. And today I don’t run, but I do pilates and strength training, and through movement I have made peace with my body. It is capable of amazing things—of carrying me further and faster than I ever thought possible.

Your body will likely carry markers of your cancer journey forever. Some of those markers are visible to others (I tell people who ask that the round 2-inch scar on my abdomen, a leftover from when my intestines were literally re-routed outside my body via an ostomy, is from the time that I was shot, because that was how acute my diagnosis felt when I first received it), and some of them are not. Those scars, pains, etc. are part of your story, but they are not your whole story—and making peace with my body is what has helped me distinguish the two.

I hope to live a long life, and I look forward to the same milestones that I did before I got sick. I am more intentional about pursuing them now, because I also know that there are no guarantees that I will have the life I hope for. And I work every day to make peace with that fact, using the tools I described here. I hope my fellow travelers on this journey and their families will find this helpful, and I wish you all many years of love, peace, and health as you reset your clocks for the years ahead.

References

Lebel S., Ozakinci G., Humphris G., Mutsaers B., Thewes B., Prins J., et al.. (2016). From normal response to clinical problem: definition and clinical features of fear of cancer recurrence. Support. Care Cancer 24, 3265–3268. 10.1007/s00520-016-3272-5

Shanafelt, Tait, Alex Adjei, and Frank L. Meyskens. "When your favorite patient relapses: physician grief and well-being in the practice of oncology." Journal of clinical oncology 21.13 (2003): 2616-2619.

Urbutienė E, Pukinskaitė R. Fear of Cancer Recurrence as Reminder About Death: Lived Experiences of Cancer Survivors' Spouses. Omega (Westport). 2022 Aug 22:302228221123152. doi: 10.1177/00302228221123152.

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