Friday, December 22, 2017

The Young Adult Ignored Cancer Patients

This is one of my pet peeves. Children with cancer have their mature, sane parents advocating for them. Adults with cancer can advocate for themselves.

The young adults - 15 to 30s - often don't find the same support or resources. First they are still trying to figure out who they are and what they will do with their life. Second, they are learning to be independent and should be focusing on their education and careers, not going to chemotherapy. There is hope now that online resources can help fill the gaps for the patients and maybe for the doctors as well.

"In addition, they will probably go on to live long lives and the harsh realities of their cancer treatment can leave them fundamentally changed forever. Issues such as infertility, cardiac damage, or even damaged blood vessels from infusions can further complicate their lives forever.

Teen and young adult cancer patients may live a long time, so it's "important to pay more attention to the quality of their survival -- and not just to their survival," Grundy says.
In other words, long-term side effects from their treatments, such as infertility, need to be avoided if possible or, when unavoidable, must be managed. A weaker heart caused by chemotherapy is not the same for an elderly adult who has only a decade left to live as it might be for someone with decades to go.

According to Grundy, the inspiration for singling out this demographic for special care can be found in a graph of US data from the 1980s and 1990s, showing improvement in survival among different age groups."

All age groups show improvement in cancer survival rates between 1975 and 1997 except young adults - where the rates were lesser or even decreased, for 30-34 year olds.

""In children and older adults, there had been substantial improvement in survival, but where the least amount of improvement had occurred was in this gap between ages 15 and 39," said Grundy, who is also an expert in pediatric, adolescent and young adult oncology with the Canadian Partnership Against Cancer.

Why worse improvement in survival for those patients?

"First of all, they get different cancers [usually] than either older or younger patients," he said. And even when teen and young adult patients get more familiar cancers, like breast cancer, it's usually in a more aggressive form.

There's also "a knowledge gap," Grundy said. "Most clinical trials are either in children, or they're in adults."

Clinical studies, which test medications for safety, dosage and effectiveness, have shown that children can tolerate more intense doses of chemotherapy than adults, he explained. Since people older than 40 are 98% of all adult cancer patients, they make up the overwhelming majority of adult clinical trials.

This means oncologists may be unsure what dose to give a teen or young adult, Grundy says."

In the meantime, it is important for patients to find the support to help them get through cancer. I learned this at my first diagnosis at age 19, when there was no internet or other cancer patients to talk to. By my second diagnosis at 45 I dove in social media to find other cancer people like me.

My points here are for young adult cancer patients:

  • You are not alone. Go to social media and find other people who are coping. In addition to 
  • Your doctors may not be used to cancer patients your age so speak up, ask questions, ask about side effects.
  • Draft a friend, spouse, family member to be your cancer buddy to take with you to doctor appointments to help you digest what you learn at each appointment. 
  • Take things one step at a time. Educate yourself in stages. Don't worry about radiation until you get through chemotherapy. Don't worry about chemotherapy until get through surgery.
And if you have cancer and need a shoulder to lean on, try me. Leave me a message with contact info or find me on Facebook. 

In addition to all the social media resources in the article, my favorite one is

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