Cancer Limbo Land: Waiting And Living In The Big Changing Unknown

Eight and a half years out from my breast cancer diagnosis, I still struggle some days with life in "Cancer Limbo Land". The fear recedes as the months and years from diagnosis increase. Still, a cancer diagnosis puts anyone in Cancer Limbo Land for the rest of his or her life. Life in Cancer Limbo Land not only is unknown, it can change.

Several years after my breast cancer diagnosis and treatment, it changed for me when I retested for genetic mutations at the urging of my oncologist. I found myself getting a prophylactic double mastectomy because I learned that I have a recently discovered genetic breast cancer mutation. I was also unhappy to recently learn that there may be a link between my PALB2 genetic mutation and pancreatic cancer as well.

Are we as cancer survivors that different from someone who has never had cancer? I don't think so. Certain diseases, like heart disease, seem to run in families too, and those offspring often worry about their own hearts. People with a genetic or familial inclination to a disease or who are survivors of a disease are going to be more aware. The ability to live life becomes more appreciated and precious—as well as much more worrisome.

Like anyone, cancer survivors just want to "get back to normal" and get on with living their lives. Unfortunately, with a cancer diagnosis, that is a little more complicated. OK, it is a lot more complicated.

Sometimes people in my life who learn they might have cancer approach me. They are waiting, worried and frightened as they stand at the border of Cancer Limbo Land. I try to encourage and reassure them. Sometimes it isn't cancer. Sometimes it is. If it is cancer, I try to gently welcome them to the club they never ever wanted to join. There is still hope, even as newly diagnosed cancer patients try to cope with the possibility of their mortality. Societally, we do not typically handle death or the possibility of death very well.

Stress. Stress. More stress. Death is now out there in the middle of the table! That is deeply scary and often life changing. According to the research, it is possible that twenty percent or more of cancer patients struggle with PTSD from a cancer diagnosis. Cancer Limbo Land is a different country to live in for the long term. Fortunately, there are more and more resources available to help cancer patients and survivors cope with the fear and stress that come with their new address in Cancer Limbo Land.

Stanford Medicine recently defined 10 steps toward emotional well-being. It is important to explore all the resources available to help cope with the stress part of a cancer diagnosis.

Strangely, a change of address to Cancer Limbo Land is not always outwardly visible—kind of like how the rest of the world doesn't know that my reconstructed breasts are not real because they are hidden away under my clothing. Though a cancer diagnosis is not always visible, fellow residents of Cancer Limbo Land can comfort, encourage and support each other. Remember that even though we live in the same country now, we each can have different needs and ways of coping. We can learn to cope with mortality and live our daily lives. Though I am sad that Cancer Limbo Land is so crowded, I am deeply grateful not to be here alone. Living here is doable and we can all be here to help each other.