Why It’s Important to Take Action to Fight Rare Cancers

Cycle for Survival

This time of the year is particularly inspiring for me because it marks the end of months of fundraising and events around the country for Cycle for Survival. Started by Jennifer Goodman Linn and her husband, Cycle for Survival raises money for rare cancer research. Every year, thousands of people (including some here on the Dr. Oz team) fundraise to support research into what causes these cancers and how we might go about treating them. Why research these cancers if they’re so rare? Because taken together, rare cancers aren’t actually so rare. About half of all cancer diagnoses are rare cancers — that means that even if you haven’t heard of them, they impact the lives of thousands of people. Today, I want to spend some time talking about rare cancers and how you can help win the battle against these devastating diseases.

The Problem With Focusing on Common Cancers
Cancers like breast, lung, prostate, and colon cancer often make the news and for good reason. Together, these cancers kill hundreds of thousands of American every year and affect many more who are lucky enough to beat cancer. Our efforts in fighting many of these cancers has helped save countless lives. Rare cancers, on the other hand, affect fewer than 200,000 people at any given time in the United States. If you’re anything like me, you’re probably thinking that number doesn’t sound so rare. In fact, when you tally up the total number of people who fall into that rare cancer category, it ends up being about half of all people with cancer including all cancers that occur in children.

So why do we have this “rare cancer” term in the first place? The term allowed the medical community to focus on the areas where we would be most likely to make an impact. Targeting our time, money, and research to the most common cancers means finding treatments for diseases that have the potential to help a large number of people. But the drawback to that focus on “most common” is that the least common cancers get ignored. So while focusing on the most common cancers has done a lot to save the lives of those who have them, it’s also drawn attention away from the many thousands of people diagnosed with cancers that aren’t well understood.

More: 22 Ways To Cut Your Cancer Risk

Poor Understanding Makes Treatment Challenging
What we’ve discovered about cancer over the many decades that we’ve been fighting it is that cancer is actually many diseases. Our experience treating patients with many cancers has shown that some treatments seem to work, sometimes for a long time, while others don’t work at all. Which treatments would work for who and why often mystified oncologists in the early days of cancer research, but we now know it all has to do with genetics.

Cancer is a disease that actually has many different genetic triggers and many cancers have a unique genetic fingerprint. All cancers are united by lost control over growth. Cancer cells pull out all of the stops that normally determine how many times they divide, how they interact with neighboring cells, and where they can and can’t go. As a result, cancer cells grow out of control, pushing out healthy cells and spreading near and far. But there isn’t just one control for these abilities. Instead, many cancers play with different parts of that control system to gain their deadly abilities. That means that a treatment aimed at shutting down one of those damaged controls might halt one cancer in its tracks while leaving another completely unfazed.

As research has progressed, we’ve figured out which treatments work the best for different types of common cancers and we’ve even started to figure out which specific drugs work best for cancers with specific genetic changes. The same isn’t true for rare cancers. Because these cancers have their own special fingerprint of gene changes, the treatments that work well for colon cancer may not be so great for salivary cancer. This can even be true within cancer types, with some treatments working for breast cancer with one mutation type but not another.

Experience Can Be Hard to Come By
Another issue oncologists run into is that their experience is often limited in treating these cancers. When you spread the thousands of cases of rare cancer out over the U.S., it often adds up to only a handful of cases in a lifetime for some cancer specialists. Like any area of medicine, oncology is a skill as well as a science, which means that experience is critical. When doctors don’t have enough experience with a certain type of cancer, they turn to their colleagues and the scientific literature for help. But without significant research into less common forms of cancer, oncologists may not have a strong foundation to guide treatment as they enter unknown waters. That can make effective treatment even more challenging.

Research Is Critical and You Can Help
But this lack of funding and understanding means that your efforts have the potential to make a big impact. Chances are good that you, a family member, or a friend has been touched by a cancer considered to be rare. I want you to take action today to raise awareness and funds to help figure out how we can move these cancers from being a dangerous unknown to diseases that we understand how to treat. There are two main ways to do this. One is to donate to an organization like Cycle for Survival that provides general funding to researchers trying to understand and treat all forms of rare cancer. Another way is to find an organization that focuses on a cancer that has touched your life in some way, whether it’s pancreatic cancer, a childhood cancer, or some other form of cancer. Many of these organizations have ways to donate to push forward research into these specific diseases. Once you’ve picked a place that could use your dollars, set up an event and get your family, friends, and community involved in donating to this important cause.

We’ve already made dramatic strides in fighting cancer, but we’re far from done. We need to make remission in rare cancer the norm, not the exception. Your efforts can make a big impact when it comes to helping us learn about how we can best treat rare cancers that affect hundreds of thousands of people.