My outlook on this subject changed somewhat last year. You see, October is also Liver Cancer Awareness Month. Dan had the rotten luck of not only being diagnosed with a liver cancer, but a rare one at that. (So rare that it was not even included as a part of the American Liver Society or American Cancer Foundation literature until relatively recently.) There are no campaigns to sell merchandise with green ribbons that I am aware of.
Throughout Dan’s seventeen-month battle, it became apparent that the general public’s awareness of liver cancer is… lacking. There is a perception that liver cancer is a side effect of lifestyle choices, and that it only affects older adults. This shows a bigger issue: public awareness of teen and young adult cancers in general is low. 10% of all cancer patients fall into this category. According to the Wall Street Journal, “Survival rates for Teen and Young Adult Cancer patients have barely budged since 1975, while those for children and older people have made dramatic gains. Some 72,000 Teen & Young Adult Americans aged 15-39 are diagnosed with cancer every year, and more than 10,000 die." Only 5% of cancer research funds are used to study pediatric cancers.
Having a “less popular” cancer with few unique symptoms can significantly impair a patients’ diagnosis. Many of these rare cancers go undetected until it is too late for effective treatment. People attribute unusual aches and pains to other causes- pulled muscles, indigestion, and pregnancy, to name a few. It can be difficult for a patient to convince a doctor that his/ her symptoms are severe enough to warrant additional scans and tests to diagnose a problem. This is especially true for children and young adults. No one thinks that a child will get a rare cancer.
“Less popular” cancers receive less funding for research. Until this year, I had never realized that there were several kinds of breast cancer, and that prognosis and treatment could vary greatly. A liver cancer patient has very limited options when discussing treatment plans with their oncologist. The only proven way to treat Dan’s type of liver cancer is surgical resection, such as the one he had in 2005. There is currently no chemotherapy treatment labeled for fibrolamellar. The only options available are chemotherapy regimens labeled for other cancers or for patients to pursue treatment in clinical trials. Both of these options are risky and oftentimes expensive, because many insurance companies will not pay for these treatments. Over the past year, I have seen many cancer patients make these difficult choices. They choose life and hope. They spread awareness every day and inspire those around them.
What can you do to spread awareness in October?
If you are a cancer patient or a survivor, celebrate your victories, regardless of the month, with your support network. If you have taken a more private approach to your treatment, you can still reward yourself. You are a fighter!
For those of you who choose to wear pink: Rock it! But remember that pink ribbons are more than a fashion statement. Tell “your” cancer patient how much they have inspired you. Take the time to do those self-checks.
For those of you who are feeling lost in the sea of pink: Remember that you are not alone. It can be overwhelming when you feel like no one has heard of your cause. Research needs go on throughout the year, no matter what month it is! Maybe this is a good time to send a letter about your cause to lawmakers or researchers, or a donation to the charity/ researcher of your choice, or to reach out for support from others.
Remember that YOU are your biggest advocate. Whether it’s a lump in your breast, unusual skin coloration, a strange pain, or digestive issues with no real cause, it is imperative that you push to find out exactly what is causing an issue. It is YOUR right or choice to see the treatment that you feel is appropriate for you.
Dan was not a “ribbon” kind of guy, but he was a big supporter of those who were feeling the effects of cancer. It is in this vein that I posted this on his page today. Hopefully he doesn’t mind. We will be back to our usual shenanigans soon!
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