Building Supportive Communities for Patients Navigating Cancer

Martha Carlson received a diagnosis of metastatic breast cancer in 2015. Read all of Martha's blogs here!

This World Cancer Support month, I’ve been thinking about what it’s like living full time in “cancer world.” Not only do I live with stage 4 cancer, my days also often include time spent talking with other people touched by cancer.

Most often this is because so very many people lives are affected by cancer. It can be hard to find the information you need right now, and I am grateful to have access to resources. When I was first diagnosed, it took me over a year and a half to connect with other people living with my diagnosis. I knew one person who was living with a Stage IV cancer (colon), but he was not connected with the larger cancer community.

We were able to commiserate with each other, but in terms what I actually needed (and didn’t know I needed), our 2-person cancer community was a bust. I also knew a number of women who had had early-stage breast cancer and though they meant well, their experiences were really nothing like what I was confronting with a prognosis that gave me just 3 to 5 more years (thankfully, I’ve lived well beyond that dismal statistic) and three pre-teen and teen children.

When I met my first fellow metastatic breast cancer (MBC) patient, she immediately connected me with organizations that had plenty of relevant information and opportunities to meet other people living with MBC.

People living with a specific cancer often know more about available resources than even our healthcare providers (sorry docs), because it is their own lives they are wanting to save. When I am asked for help from someone newly diagnosed or their loved one, my first response is to reach out to the many advocates I know from nearly a decade of involvement in the cancer world. There is something to be said for the so-called hive mind when it comes to getting the right care for cancer. I'll shoot out an email asking if anyone knows the best doctor, hospital, or treatment for liver, lung, or brain cancer and get back multiple suggestions, usually asking for more information because cancer is so complex there is almost always a need to drill down into the specifics of an individual’s diagnosis.

Though I don’t like the need for it, I do enjoy sharing what I have been told about cancers less familiar to me than breast cancer. However, what I really love is that most of these emails include offers to speak directly with the patient or family member, links to patient groups that provide factual and helpful information about treatments, side effects, support groups, and other resources.

When you know one person in the cancer world, you will never be alone. You will be surrounded by hundreds or thousands of people who want you to get the right care, who will help you find the words that a busy doctor will understand, who will explain the ins and outs of managing disruptive side effects, and remind you to live one day at a time and to remember that you are here now, living.

Recently, I was asked by my husband if I knew anything about oncologists specializing in colon cancer in Chicago. I know very little about colon cancer, but I knew exactly what group to turn to and they did not disappoint (colontown.org), helping this sister of a newly diagnosed young man find information as he starts his care. Because here is the truth: being diagnosed with cancer is a shockingly lonely experience even if you are surrounded by family and friends who love you deeply. There are a lot of unknowns for most of us and sometimes even the most expected choices (like searching the web for patient groups) may not come to mind because you don’t know they even exist.

When you’ve been healthy and suddenly are not, you deserve good information and support. I am forever grateful to my cancer advocate friends who remain willing to share everything they know if it might help someone else. In a time where too often people are focused on keeping everything for themselves and letting others struggle, it is impossible to overstate the gift of the cancer community.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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