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A new way to organize cancer support groups: A caregivers’ suggestion

“Does anyone have tips for traveling to Hawaii with a neo-bladder?” the woman asked the group after her husband described his recent reconstructive bladder surgery.

I envied them. I would have given anything that 2013 summer evening for my problem to be about the logistics of traveling to Hawaii.

I had come to the bladder cancer support group alone because my husband Ahmad, who had bladder cancer, was asleep for the night from strong opioids for pain. We had gotten married in Hawaii but would never again travel there together.

The roughly 30 attendees consisted mostly of couples. Only one other person had arrived alone. By the time the Hawaii-bound couple introduced themselves, I had realized mine was the saddest story in the room. Most patients had early-stage diagnoses and were on their way to a cure and a resumption of an altered, but nearly normal life.

I sought support but, despite everyone’s kindness, I felt worse after attending the group. I had expected that others at the meeting would also be dealing with pain management and, like me, trying to process a scary lifespan estimate of eight months to three years.

“My doctor told me I won’t die from this,” the man sitting next to me had said before the meeting started.

At our appointment the week before, the oncologist had emphasized that my husband would die from this. I couldn’t bring myself to tell that to the man next to me.

Attending the group that night crystallized my belief that emotional support for cancer patients should be organized by prognosis rather than organ. Typically, those who are expected to die are routed into support groups with those who are in remission. This is deemed logical because both have a cancer originating in the same organ. But classifying patients this way is meaningless, and oftentimes cruel, because it disregards everyone's emotional needs.

If someone suggested a parenting group that included both parents of healthy toddlers as well as parents of severely disabled toddlers, most of us would find that illogical and unhelpful. We would likely think it cruel to both groups: the parents of the healthy might feel guilty and uncomfortable while the parents of the disabled might feel sad and reminded of their difficulties. But that is exactly how the medical system treats cancer patients and their families.

As I told of the swift and distressing trajectory of my husband’s disease – the rapidly growing tumor pressing on his spine, the escalating pain and heavy-duty opioids just a month after diagnosis, the need for a walker even though he had been jogging just weeks earlier, the 10 days in the hospital for severe blood clots, my inability to get him safely into the shower or the car – the room grew quiet and serious. Fear filled the eyes of the spouses. I hated that I was dragging them down. I hated that I was living the story they most feared. I hated that they were relieved to not be in my shoes.

Metastatic bladder cancer patients probably have more in common with metastatic lung or prostate cancer patients than with early-stage bladder cancer patients. The breast cancer world has recognized this and often offers separate support groups for metastatic patients.

Cancer treatment continues to evolve towards treatment based on the genetic makeup of the tumor rather than on the organ of origin. Similarly, I believe cancer support groups should be based on emotional needs rather than diseased organ.

Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network (BCAN). She lives with her husband, Tim Louwers, in Virginia and San Francisco.

Photo by wollyvonwolleroy

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