Cancer Positivity Can Isolate Those With Poor Prognoses

Cancer support groups

A couple months after my first husband, Ahmad Khoshroo, was diagnosed with metastatic bladder cancer, I decided to go to a support group. He was too tired to go so I went alone. I hoped that I would meet others who were experiencing the same challenges that had come upon us quickly – managing pain and pain meds and making sense out of this devastating diagnosis.

About 30 people attended, mostly couples. I talked briefly with the man next to me.

“My doctor told me I’m not going to die from this,” he said.

All I could think was that my husband’s doctor told him that he would die from it. And already I felt worse than before I had arrived. I quickly realized, as people introduced themselves and told their story, that I had the worst-case story in the room. I dreaded telling our story.

Seek out others with a similar prognosis

The breast cancer community has realized there are benefits to having separate support groups for patients with metastatic disease. Their concerns and problems are very different than those of patients who are in treatment for a limited time and who are expected to survive long-term.

As I told our story that night, I could see the fear in the eyes of patients and caregivers who faced early stage diagnoses. I hated that I was dragging them down. And I could feel the envy welling up inside of me: they talked about the challenges of traveling to Hawaii with a neobladder. I so wished that traveling to Hawaii was our problem. Instead, I was worried about how to safely get my husband to the shower when he was groggy from pain medicines.

We live in a culture of positivity about cancer

We live in a culture in America that encourages us to stay positive when it comes to cancer. In many ways, this is helpful and terrific. Especially for those who are on the path to recovery. I fully support positivity in the right contexts. But for those who have been told that they are likely to die at some point (maybe soon, maybe a long time from now) from their cancer, our culture doesn’t really accept that as a possibility.

And so, it can result in those patients and caregivers feeling incredibly isolated. If they don’t talk positively, people gently scold them. They are often discouraged from expressing their deepest fears based on the medical information they have been given. As a result, they often suffer alone.

Connect with others

If you are in this situation, please know that you are not alone. If you know someone in this situation, consider reaching out to them (consistent with cues from them) about their deeper thoughts and feelings about what’s happening. Try to connect with others in the same situation if you face a metastatic diagnosis. There is no need to suffer alone. Maybe not everyone can understand or acknowledge the situation but finding those who can will help you immensely.