If you get a cancer diagnosis, it’s increasingly important that you understand the unique testing and treatments that are exploding and available to you, and to maximize the positive impact of behaviors only you control, such as diet, exercise, rest, attitude, and adherence to doctor’s orders. I see online grassroots groups as the most likely source of the services you need to engage.
A Story of Success Due to Active Engagement in Cancer Treatment Decisions
Norman was desperate. His wife Anita had been diagnosed with a rare cancer (a gastrointestinal stromal tumor) for which there were no treatments available. Grasping for a way out, he got Anita into a clinical trial of a new drug (“Gleevec”). It was the first test of the drug with her cancer. Luckily, Anita made an amazing recovery. Her success meant her cancer went from lacking a treatment to becoming treatable, and it was one of the first instances where a patient advocating for personalized medicine made a huge difference.
A Story of Problems Due to Inadequate Education and Support
Becky is the caregiver for her husband, Bill, who has colon cancer. Becky and Bill are smart, well-educated engineers. When Bill was diagnosed, they thought they were actively engaged and on top of his treatment. But without help at critical turning points, Bill progressed from the detection of cancer (“Stage 0”) to the spread of his cancer to other organs (“Stage 4”), and he has had to endure a series of debilitating chemotherapy treatments. Becky is convinced that if they had had access to an online support community sooner, Bill’s cancer would have been addressed sooner, with a better outcome. “If we would have had a community of people advising us, we would have done things so differently. After the Stage 4 diagnosis we fired our doctors and went to an academic cancer center, and they told us about an online community of people with colon cancer (Colontown). The people in the community could commiserate. They could advise us on which clinical trials to look into and could explain them. We learned about requesting DNA. We learned about diet. People have been warm and helpful with advice. I think it would have been different if we had had Colontown. When Bill was Stage 0, his cancer should have been kept in control better. I’ve gotten to know the people in the community, and they help me translate and get us smarter. We were just too shell-shocked in the first go-round.”
You Need to Be Actively Engaged in Your Treatment
If you get a cancer diagnosis you need to actively engage in your treatment, or else bad things can happen. Putting all your trust in the medical system – or avoiding the medical system – might have worked for you in the past, but it can be fatal with cancer. You cannot make informed, educated decisions about your care or navigate your care treatment, unless you actively participate. For example, your doctor may recommend an invasive treatment like surgery or chemotherapy, which are standard, when you have other, less invasive options, but are more experimental. You need to personalize your treatment by gathering diagnostic data and identifying targeted treatments unique to you, advocate for access to the latest care options, and learn about and follow guidelines for a healthy lifestyle.
Complication: Almost No One Wants to Be Actively Engaged in their Treatment
Those who are interested and have the resources to actively engage in their own care, like Norman and Anita, are a small subset of the entire population, since most people would prefer to either avoid the issue, let their doctors make all the decisions, or they can’t afford the money or energy to engage. You may be in awe of your physician and not feel comfortable or equipped to ask questions or share in the decision-making about your care. Given these realities, how can you find out more about what you need to know about your disease and advocate for yourself?
Call to Action: Join Grassroots Online Cancer Communities
You and your caregiver should join some of the many grassroots online cancer communities to learn about your disease and treatment options, like Colontown, which was so helpful for Becky and Bill. These online communities can provide useful, specific, and timely information in ways that are easy to digest. Another example of online resources is SequenceMe, which explains the power of genomics and makes the case for getting your tumor DNA analyzed. You can also subscribe to online services, like Cancer Commons, to get advice on your best treatment options. And you should also consider joining groups which specialize in organizing activities to accelerate development of innovative treatments for your cancer and can help you get access to them, such as the Multiple Myeloma Research Foundation, the Global ROS1 Initiative, the Pacific Pediatric Neuro-Oncology Consortium, and the Count Me In initiative (currently organizing research for metastatic breast cancer, metastatic prostate cancer, and angiosarcoma).
I would appreciate any help you can provide in building out the problem and solution to increasing active engagement in cancer treatment.
- What arguments can get attention? Do you have any stories you can share of people who were persuaded to actively engage in their cancer treatment?
- How to reach people? What channels have you seen that get the attention of people with a cancer diagnosis?
- What are the solutions? Have you seen approaches you can share that effectively persuaded people with a cancer diagnosis to actively engage in their treatment?