Wednesday, March 14, 2012

The forgotten population

Are young adults with cancer really the forgotten population? That's what the American Cancer Society tells us. They are also the ones who labeled us all 'survivors' which is another term I am not too fond of. They don't tell us why they are forgotten but they are labeled.

Young adults are diagnosed with cancer at much higher rates than pediatric cancers and have much lower survival rates. Its only in the last ten years that attention has been paid to their specific needs. I can understand both of these issues.

As children we are taken to the doctor by our parents and have regular well being check ups. Once we graduate high school and are out on our own, we aren't as motivated to go to the doctor as we are usually relatively healthy  and don't feel the need for medical attention. Our mothers aren't making us our doctor appointments and taking us there. Besides they might cut into our social lives. Also, doctors are less likely to expect cancer in a young adult than in an older one because statistics tell us they aren't as likely to get cancer than older populations. And unexplained aches and pains can often be attributed to an active lifestyle.

Cancer was always for old people so support systems were not created for the younger adults who might be in need of them as well. Children with pediatric cancer live with their parents who provide a built in support system. As a young adult, age 19, at my first cancer diagnosis, support groups were for old people. No one talked about long term issues. Old people talked about, well, old people stuff - like their grandchildren or their arthritis. At 19, I wasn't interested in either topic.

Young adults have other issues - like dating, fertility, long term side effects, financial challenges - working a lower paying, entry level job and paying medical bills if they are lucky enough to have health insurance. Also, the big question - what is my life going to be like now that I have cancer? Doctors are used to talking to older people about these issues.

"People are really trying to establish their identities, their sense of themselves, their ideas about the world, their careers, families, intimate relationships. And those things are all going on at the same time as a young adult has cancer," said clinical psychologist Karen Fasciano, who runs the young adult program.

That can bring financial challenges and concerns about long-term side effects from treatment.

I personally know people who had cancer as young adults and then died as the result of long term side effects from treatment. This is a real fear. When the FDA approves a course of treatment, they look at the five year health of the people who received the treatment, but what about the thirty year health? Those studies don't exist. Just call us the guinea pigs

The young adults with a cancer diagnosis should not be forgotten. They are gaining their voice and making their presence known with organizations like, also known as Stupid Cancer, or the Young Adult Cancer Conference held annually in Boston and taking place March 24 this year. Let's not forget the young adults with cancer. I was once a young adult with cancer and I can say we are people too.

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