Remission: Uncertainties of Life After Cancer

When my sister’s oncologist told me she was in remission after her autologous transplant, I was shocked. Remission had always been our hope, but her journey defied expectations at every turn and for several years, remission did not seem a real possibility. Once the reality set in that she was cancer-free and in remission, I realized I was unprepared for what life would look like after cancer. The main challenge was navigating the uncertainty of this new phase, as remission turned out not to be the end of cancer in our lives, but rather the beginning of another unpredictable chapter.

Prior to transplant, her care team said things like "we hope" or "that is the goal." In almost five years of cancer, the after of cancer was only discussed at diagnosis — which was before we grasped her cancer’s complexity.

The plan was six rounds of ABVD, follow-up and monitoring, as Hodgkin Lymphoma cure rates were said to be high, so her prognosis was thought to be good. My sister’s life was expected to return to normal post-treatment. Unfortunately, nothing about my sister’s treatment or cancer journey went to plan. Changes and adaptations had to occur, and every expectation that we and her care team had had we replaced by fear and uncertainties.

Upon receiving her first dose of ABVD, she had a mild reaction. And while we did not know it then, that was a foreshadowing event for all that was to follow. Almost no therapy came without complications. Even when there were no immediate reactions, her body seemed to be keeping score, in which she would eventually some to have dangerous and life-altering side effects to several of the therapeutic approaches attempted. Bleomycin toxicity from the ABVD regimen led to PCP pneumonia, marking treatment failure. Her inability to finish ABVD allowed the cancer to regrow, refract. With each setback, looking ahead felt unproductive and, at times, cruel.

Getting my sister into remission for a bone marrow transplant was so difficult that we rarely discussed life after cancer. Hope mattered, but guidance for life beyond transplant was not a pertinent focus given the difficulties of just getting her through each day and phase of cancer. Still, remission brought cautious optimism as we stayed near her treatment hospital, Presbyterian St. Luke’s in Denver, for step-down care. My sister faced many more complications and although in remission, infections caused us to question if there would be an after-transplant for her. This uncertainty shaped our roles, especially mine as a caregiver.

My sister faced ongoing mental and physical complications from years of treatments. Once she was in remission, my role as caregiver did not end. The demands were overwhelming. Although I was grateful for professional support, it was limited. Many in our family assumed remission meant cancer was "over." For us, though, it was a new turning point rather than an endpoint. The journey remained isolating but hope for a new normal kept me moving forward. Even while the worries of relapse persisted, my focus was on supporting my sister’s adjustment from patient to survivor. Each step reminded me how much guidance was still needed as we transitioned to this next chapter.

I wish I had known even to ask for more guidance during the transition from active cancer to after cancer. I do not want to negate the support that was received, because I am most grateful. My sister and I just needed more to assist with navigating the after cancer phase that we went through. I encourage anyone who is going through cancer to begin the conversation with your care team, or the care team of a loved one if it is not already happening. Remission is not the end of the cancer journey. It is a new stage that demands ongoing support and resources and these conversations can help with the many unknowns after remission. Seeking guidance at every step is crucial for both caregivers and survivors in the unpredictable journey beyond remission.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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