I Was Unprepared for the ‘Stark Realities’ of Cancer Survivorship

Survivorship is that thing that everyone diagnosed with cancer strives to achieve. We yearn to be able to say, “I survived cancer” and get past all the treatment, endless clinic visits, tests and scans. We want to be able to celebrate victory, and to move beyond the present and focus on the future.

But there are so many facets of survivorship that no one prepares you for. Despite the assertion that oncology clinics are trying to ensure that they arrange survivorship appointments with all their patients when their active treatment nears an end, I don’t think they are not doing a very good job on this front.

Personally, I never had any survivorship appointment at all, and I was woefully unprepared for some of the stark realities that survivorship brings with it.

Here are just a few of the lessons that I have learned about survivorship, either through my own experiences, or through talking with other cancer survivors and providing support to them.

1. As patients approach the end of active treatment, they are released from such frequent follow up, and the regular appointments that have become quite customary suddenly cease. After such an intense period in a person’s life, this feels like the health care team is suddenly abandoning you. For me, it was very much of a “Huh??” moment when, one by one, all the people I had come to depend on told me that I didn’t need to see them anymore (this included my oncologist, my surgeon and my physical therapist, amongst others). It is a stark wake-up call when the security blanket of regular check-ins is suddenly removed, and you are given a smile and a wave and told that you are done, and you realize that you are now expected to just move on with your life. Which brings me to the next point.
2. You are not “done” after treatment ends, and life does not “go back to normal.” Cancer forever changes a person. There is a very real physical and emotional toll that being diagnosed with cancer and undergoing cancer treatment takes on a person. For some people, they might have permanent effects from chemo, radiationor surgery. However, those scars may not be confined to just physical impacts. There are also very real psychological scars. The ever-present fear of recurrence fundamentally changes a person at their very core. This part is incredibly difficult for family and friends who have not personally experienced cancer to really appreciate. Cancer truly messes with your head in a very profound way. It can twist reality and alter a person’s perception of what is and is not real, especially when it comes to the potential for recurrence. Perseveration and catastrophizing are very real, and these are tendencies that are incredibly difficult to avoid or correct. For some people, survivorship is harder than active treatment.
3. The collateral damage of cancer is all too often invisible. For instance, for those women who have hormone-driven cancers (such as breast cancer, ovarian cancer or endometrial cancer), part of treatment may include hormone blockade and inducing menopause, either through medications or surgeries. For women who are young at diagnosis, this can have a profound and permanent impact on their ability to bear children in the future. Cancer is the gift that keeps on giving — or more correctly, keeps on taking — from too many people for far too long.

Survivorship is the end-goal for many people diagnosed with cancer. However, the road to reach this goal is far from direct and comes with inevitable ups and downs and abrupt twists and turns.

The medical community tries to provide social and emotional support to cancer patients, but unfortunately, I feel that they are utterly failing at this endeavor. I make this statement as a part of the medical community myself (I am a physician in addition to a cancer survivor).

They try, but especially after the COVID-19 pandemic, the medical community is in crisis mode, and they are simply unable to provide for what their patients need after cancer treatment is over. They are struggling to keep up with simply providing the medical care that comes with a cancer diagnosis.

There are, however, many organizations and resources that provide this type of support outside of the conventional clinic-type medical model. These can take the form of traditional support groups, or one-to-one peer matching services which can be an invaluable source of emotional support during and after cancer treatment.

Survivorship is an entirely new ball game, and navigating this sometimes-unpredictable phase requires time, patience and grace, understanding and most of all support as a person evolves from being a cancer patient to a cancer survivor. Finding this type of community support, from people who truly “get it,” is an essential part of the journey into survivorship and beyond.

This post was written and submitted by Natasha Carlson. The article reflects the views of Natasha Carlson and not of CURE®. This is also not supposed to be intended as medical advice.

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