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Paging Dr. Web

Surprise! You can’t believe everything you read on the internet!
PUBLISHED March 21, 2019

Kevin Berry is an 13-year mantle cell lymphoma survivor, in his third remission. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna. He lives in Central Florida with his wife and adult children.

Every cancer survivor remembers D-Day in grotesque detail. The look on the doctor’s face, the ice-cold shock filling our veins, the first words said in the parking lot afterwards. The other thing we all do within a couple of hours is to consult "Dr. Web." This is also known as the Internet.

We remember going to our computer and searching the term: “survival rate” for our specific cancer. In 2005, my results said: “Mantle Cell Lymphoma (MCL) is an incurable subtype of Non-Hodgkin Lymphoma (NHL). Chemotherapy usually results in a response but unmaintained remissions are short and the median survival is 3 to 4 years.” Grim news. Even back then this was not really true.

Dr. Web is a plagiarist!

MCL was a recently identified and little understood disease then. Most scholarly articles and “popular” sites (such as the Leukemia and Lymphoma society’s page) used these identical words, obviously copied from each other.

Dr. Web is a bad research source!

Researching current scholarly articles, especially from Europe, showed that the three-to-four-year survival rate was “old news.” Cutting-edge research was being done in Germany, which moved to England, then to Canada, then to the U.S.  The information in peer-reviewed, publicly available articles was quoting three-to-six-year-old data. In fact, by mid-2006, many new treatments in Germany were showing promise and the median rate of survival was over eight years. While eight years isn’t a lot more encouraging than four, it was moving in the right direction.

I was fortunate that one of the leading MCL researchers in the world was at the closest regional mega-cancer center. Due to the rarity of the disease he saw few new patients. He spent a lot of time with us explaining the progress of current treatments. “Your goal,” he said, “is to get into remission, to give the science time to catch up to you.” There should be new treatments available to me if or when I fell out of remission.

He was right. I’ve had MCL three times over the last 13 years. Each time, when I needed it, new drugs and treatments were available to put me back into remission. There’s already a very promising procedure being used if I relapse a fourth time.

Dr. Web is a pessimist! Things may not be as bad as you read.

This article boils down to a few key points:
  1. Don’t believe everything you read on the internet. Especially popular articles. Even articles in scientific journals can’t be seen as definitive, since the purpose of them is to promote debate and discussion among researchers
  2. Don’t believe the percentages. These are averaged over all ages, overall health, and decades. Since most cancer patients are very old, the survival rate for middle aged, or young people, are likely to be much higher, according to the National Cancer Institute.
  3. If any popular article about your cancer is more than a year old, it’s obsolete. Scientific articles might be accurate a bit longer. Remember, major conferences about your specific cancer happen at least yearly. That means a 3-year-old article is suspect
  4. Don’t automatically trust your local, general purpose oncologist. Many do a yeoman’s effort keeping up with progress, and (hopefully) research your particular kind of cancer. But with hundreds of cancers, (90 Non-Hodgkin’s Lymphomas alone, up from 40 a decade ago), there is no hope they are an expert in your cancer. If you have one of the “Big Three” (breast, colon, lung) there is a large body of knowledge and well-understood treatments. MCL accounts for less than 0.25% of cancers, for instance. There are only a handful of researchers worldwide. Getting seen by a specialist for your specific cancer is a key recommendation for new patients.
  5. Ask about genetic typing for your cancer, no matter what kind you have. Cancer is a very individualized disease, and there may be as many kinds of cancer as there are patients. There are often multiple treatment choices and genetic testing may guide you into the best choice.
Besides the other wonderful blogs on CURE®’s site, I hope you'll visit my Taking Vienna site. I also encourage readers to visit the Be The Match site to learn about registering as a potential stem cell donor.
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Talk about this article with other patients, caregivers, and advocates in the Mantle Cell Lymphoma CURE discussion group.

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