A diagnosis of cancer is the last thing anyone wants to hear. It can be a struggle to understand what you’re dealing with and sometimes it can seem like you need a PhD to understand what to do. That’s because cancer is increasingly complicated.
It’s not just that you have abnormal, malignant cells growing in your body. It’s also about what type of cells they are, how many, where are they going, and whether they have a vulnerability that can be exploited by one medicine or many – and dosed in which order? Whew!
A diagnosis of cancer is the last thing anyone wants to hear. It can be a struggle to understand what you’re dealing with and sometimes it can seem like you need a PhD to understand what to do. That’s because cancer is increasingly complicated.
It’s not just that you have abnormal, malignant cells growing in your body. It’s also about what type of cells they are, how many, where are they going, and whether they have a vulnerability that can be exploited by one medicine or many – and dosed in which order? Whew!
Patients used to just rely on their doctors to know what to do, but now more of us are not always sure the first cancer doctor we see (usually a “generalist”) really knows the score. It’s not just complicated for us, it’s complicated for them! And it’s easy to get confused.
Valerie Harper at a Lung Cancer Foundation of America event. Photo courtesy of LCFA.
For example, you may have followed the many recent articles and interviews about actress Valerie Harper. It turns out that she doesn’t have brain cancer, like she thought. In 2009, she was diagnosed with and treated for non-small cell lung cancer. What she’s dealing with now is lung cancer that has spread to her brain, a totally different cancer biology.
Sometimes the distinctions don’t matter. Whether it’s this cancer or that, cancer is a heavy emotional load. But clinically the medicines used will be completely different, and the prognosis may be different too. Also, how you should live your life may also be different.
Living well with cancer means you have to work harder to “get smart” about your cancer and partner with your medical team for good information. As just one example of this, there is a barrage of US television commercials urging Americans to get a shingles vaccine shot. That’s a bad idea for patients with chronic lymphocytic leukemia, as we learn in Patient Power’s video with Dr. Neil Kay from the Mayo Clinic.
Patient Power remains committed to bringing that ever deeper, more specialized education to patients. In the coming weeks you will see us focus in on specific conditions and increase the content we offer for those impacted by them. We’ll also step up the frequency of updates. But we have a request of you too. Be sure to be signed up for “alerts” on our website for your condition. That way we can help you earn that “graduate degree.”
Also, from time to time we’ll produce town meetings in which experts and patients really explore key areas of concern in depth. The next one is Nov. 23, 2013 on myeloproliferative conditions at MD Anderson Cancer Center in Houston.
Fortunately, more of us are living with a “chronic cancer” and we continue to thirst for information over time: What’s new? Do I need a better treatment now or soon? Is there a clinical trial I should know about? How do I manage symptoms and side effects? Is there an expert I should go see? How do I speak to others about my condition? Where are other people with the same diagnosis?
Yes, it’s complicated and no, you didn’t “sign up” to be a cancer expert. But it’s worth a little effort to be knowledgeable. You can count on me, and the communities of people we work with at Patient Power, to help you navigate, be educated, and be empowered.