Getting Off the Merry-Go-Round of Advanced Cancer Treatment

A friend with advanced cancer has been living the best life she can under the circumstances. She engages in activities, gathers with friends and family. She rarely complains, but neither is she a martyr nor suffering in silence; she would always indicate when she was starting to feel pain or discomfort and that it was time for her to go home.

She has been undergoing various treatments, her oncologist trying new and different things, switching as one or the other stopped working or presented difficult, unmanageable side-effects. As for what those treatments were or what type of cancer she has, does it matter? I see them as interchangeable details in the canon of cancer stories.

Just recently, she had a procedure done to alleviate the pain she was feeling in her back. At the same time, a port was implanted in preparation for another round of chemotherapy, which surprised me, because she had said multiple times how difficult the effects of chemo were and that she was ready to get off the treatment merry-go-round.

Less than a week later, she did just that by choosing hospice care, which treats the person and unpleasant symptoms of the disease as needed, but not the disease itself.

"In our current culture and system of cancer care, patients are put on a merry-go-round of treatments and procedures."

In our current culture and system of cancer care, patients are put on a merry-go-round of treatments and procedures. For many people with cancer, the ride is short. They get to NED (no evidence of disease), which is the holy grail for patients with cancer. We all long for cancer to be eliminated completely, but for now, it’s encouraging that NED is increasingly the outcome.

Yet for some of us, NED never shows up or makes only a fleeting appearance. Our goal shifts to progression-free survival for as long as possible.

We can be uneasy with that reality and even defiant, but as uneasy or defiant or anxious or afraid as we may be, the day will likely come when treatment is no longer an option — the cancer progresses or evolves into something that no drug or radiation or surgery can address. Or the next recommended treatment may be one that will extend our lifespan, but for a precious short amount of time and at a great cost — financial, physical, emotional, pick a dimension, any dimension, including that all those dimensions have been drained and depleted already.

I was diagnosed with stage 2 breast cancer in 2000, had a local recurrence in 2004, and discovered the cancer had returned and metastasized to stage 4 in 2016. I am like the Energizer Bunny that takes a licking and keeps on ticking. Oh wait, I am mixing metaphors and advertising campaigns. The point is, I have been dealing with breast cancer on and off for nearly 25 years and I have beaten the odds by surviving metastatic breast cancer for nearly seven years.

Yet seeing what my friend is going through and knowing that my own treatment options are narrowing, I am starting to think more seriously and soberly about my next options and decisions. Will I say YES, continue treatment, continue aiming those guns at me, I’m in this for the duration — the answer expected of cancer patients; or NO, let nature or God or the Universe or whatever force is running this show to take over from here; I want to live whatever time I have left without seeing the inside of a cancer center ever again.

To stay on the merry-go-round or jump off, that becomes the ultimate choice for people with advanced or difficult-to-treat cancer. It’s a deeply personal choice and I believe there is no wrong answer. Either option is right, as long as it’s right for you and your loved ones.

As for me, I am also living the best life I can under my circumstances. I have started to talk more openly about the decision I will make, but talk is cheap and easy. My hope is that I, and all of us facing this situation, will have the courage of our convictions and support of our loved ones when the time arrives to make it.

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

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