Side Effects and Psychologic Distress May Stick Around After Remission

I have witnessed firsthand through my sister and other patients how difficult cancer can be. While some effects of cancer are visible, others are not. Beyond treatments and diagnosis lies an incredibly in-depth psychological layer that those of us who haven’t ever been diagnosed will always fail to fully understand. That, however, doesn’t mean we shouldn’t be trying harder.

Historically, care during the course of cancer has been largely relegated to the treatments, not really considering what patients experience during or after those treatments come to an end. Thankfully, we have made incredible advancements in the field of oncology medicine, meaning that overall survival rates continue to improve. The reality, though, is that focus on the care after treatment ends has not followed.

My sister was lucky to receive care from the onset of diagnosis for both the physical and psychological complications. Unfortunately, like many adolescent and young adult (AYA) patients, she declined some of that care. While she is seeking treatment now, it is harder for her to cope with all that happened while she was sick than it may have been for her had she sought that available care throughout her journey with cancer.

Before each treatment, a team would consult with both her and myself about what was going to happen and what the goal was. After the complications to her initial treatment, what to expect was no longer important. Both her team and we, as her family, simply learned to always expect the unexpected. Even with that attitude, it isn’t easy.

Living with cancer is a daily struggle of consistently facing the unknown, wondering if treatments will work and how sick will you be, having anxiety over whether the next clinic visit will be the one where they tell you there isn’t anything left that they can do, and always pondering life and death and wondering if remission or a cure will ever happen.

Having spent so much time beside my sister, I know that these questions plague her just as they do for so many other cancer patients. No matter how difficult it may have been and is to watch another endure cancer, nothing will ever compare to the level of difficulty for those who live with that diagnosis daily.

Previously, cancer was often considered to be a terminal illness, but as we make remarkable advancements, cancer is now much more of a chronic illness. Lingering effects vary from treatment to treatment, but it is common for some kind of effects to stay after remission.

Like so many issues related to cancer, the topic of psychiatric care is difficult. That doesn’t make it any less important of a conversation to have. Through resources like palliative care and support groups, we have resources to help patients cope. And on a personal level, I think those in the medical community can do better to try and bridge the gap between treatments and associated psychological issues that many patients like my sister experience.