The All or Nothing Cancer Narrative: Why ‘Living With Cancer’ Is a Confusing Phrase

Article

A mother of a breast cancer survivor who has lost loved ones to the disease explains why the phrase “living with cancer” doesn’t make sense, because there is no escape from it after diagnosis.

Like many people, before supporting my daughter through breast cancer treatment when she was diagnosed at 27, I thought I had a handle on what a cancer diagnosis meant. After diagnosis came treatment and it either worked, or it didn’t. If it worked, you walked away and resumed your life as it had been and lived the rest of your years cancer free. If it didn’t, you died.

Have I ever learned a lot since then?

There is no narrative wherein you are diagnosed with cancer and you neither live nor die, or where the treatment works but the side effects of treatment and living with the fear of recurrence aren’t an ongoing struggle. Yet there are so many people who have been diagnosed with cancer who live in that space between.

If you are one of the lucky ones and treatment works, it still doesn’t mean that there is an end date to cancer for you. Survival statistics tell you how much of a chance there is that you will be around in five years, or 10, depending on what stage you are when you are originally diagnosed.

Some days it’s easy to situate yourself in the plus column, where you are part of the group that makes it.Then an ache or an itch or a rash will happen, and you are tossed over the net into the opponent’s side — and then hang out there until a test result comes back to put you in the clear.

This “new normal” means that for the rest of your life you are a ball in cancer’s court, and you have to learn to live with the knowledge that at any time an ace could knock you out of the game for good.

And if your cancer is metastatic, the game is rigged from the beginning.

It can be very confusing to hear someone say they are “living with cancer” because the common narrative doesn’t include that as an option. People living with metastatic cancer can often look and live like they’re fine — going to work or school, attending soccer games, hosting dinner parties.

Perhaps you’ve heard they were diagnosed, and you see them and assume it’s over because they look like they did before, and when they say, “Nope, I still have it,” you’re stumped at what to say next. Or you encounter them a few years after you assume they are cancer-free, only to find that the ravaged body you see has been dealing with the invader the whole time. Most of us have no frame of reference for that type of discussion and the bewilderment we feel makes it very difficult to respond.

I have been told that living with cancer can be a very lonely place to be because the lack of understanding about it means the patient with cancer either has to be the educator, which can be exhausting and triggering, or they have to shrug it off because talking about it openly makes the other person too uncomfortable.

Cancer is often spoken about in whispered tones because that all or nothing narrative is so persistent.In early days when someone was diagnosed with AIDS it was a death sentence. Now people — including public figures — live with AIDS and if we sit across a desk and a doctor tells us we are HIV-positive, we take for granted that living with it is possible because the public narrative has advanced along with treatment.

There is a growing voice in the stands watching the cancer ball get volleyed back and forth that is asking for more attention to be paid to the fact that many people are living with cancer and we need to talk about that. Openly.

We need to hold space for people who are seeking treatments to let them live longer when the one they are taking stops working. We need to normalize the idea that for most people who are diagnosed, regardless of status, there is no end date to cancer. We need to recognize that the time gained from treatment may be just enough for that magic potion to be found.

And most importantly we need to change the narrative so that we can all acknowledge that for people living with cancer, the hope is that at some point it will simply mean living and our job right now is to support that goal in whatever way we can.

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