Cancer in young adults: Report and reaction

Hey, gang,

It’s nice to be back in your inbox again. We’ve had a busy couple of weeks at RealTime Cancer thanks to the extensive coverage on the study of cancer in young adults released last Tuesday.

As the study proclaims, it is the most comprehensive study ever done in Canada involving young adults and cancer. This is a huge step for all young adults dealing with the unique issues that come along with a cancer diagnosis; people are paying attention. As you may have guessed, I have some definite opinions about the study and the messages that have been put out in the media.

So I thought I’d share them with you.

On our website, and in this message, you’ll find a collection of links to information about the report and the media coverage that has resulted from its release. But in this message, I want to hit on a few of the key points that jumped out at me.

First, the fact that a significant percentage of the country is talking about young adults dealing with cancer is huge. It’s a massive push in awareness both towards improving things for young adults and for RealTime Cancer’s programs. Here’s a big thumbs up to those who committed the resources and did the research.

Secondly, although this is a huge step, I was troubled, and even a little frustrated, to see that the first message and headline in the study was a positive statement about incidence rates, when the fact is that young adults have to deal with significant and unique challenges when diagnosed with cancer.

I’m not a scientific researcher and thus I approach this topic from a survivor’s perspective. Suffice it to say I would have chosen another message–maybe something along the lines of “Cancer is different for young adults, different approach required.”

Thirdly, the study looks at young adults aged 20-44. This isn’t something I’ll delve into much, but in my opinion, this is a stretch. In addition, another charity released a position connected to this report highlighting its definition of young adults as being 20-49 years of age.

My purpose for raising this issue is not to instigate the dialogue on the definition of young adult for the purposes of cancer programs, though it is one we constantly discuss at RealTime Cancer. My purpose is to point out that some of the major messages pulled from this report can be disputed if you adjust the definition of “young adult.”

For example, a message that I pulled directly from a study done by Dr. Archie Bleyer, a member of RealTime Cancer’s health advisory board, states that incidence rates in young adults aged 15-29 years has been increasing faster while mortality rates have been increasing slower in the past 25-30 years than those in younger and older age groups.

Not to get too distracted by that point, but it is one I felt I should make here. I chose not to have this discussion with the media in the past few days as it would surely have clouded the issue. Hopefully it hasn’t for you.

My fourth and final point is that another very positive thing this report has done is to allow RealTime Cancer and young adult survivors to voice their opinions about why cancer is different for young adults. These issues are the same as the things you’ll read on our website and that I write about: fertility, finances, dating/relationships, education, and career have all come up in the past week.

As for next steps, it is my understanding that Cancer Care Ontario, the driving force behind this study, is planning another extensive look into what adjustments are required to better service young adults. This would be another huge step toward the actual implementation of programs focused on the needs of young adults within the Canadian healthcare system.

Outside the system in the community where RealTime Cancer operates, I have a clear idea of many of the things that need to happen.

We have been saying for a long time that there is a “gap” in the cancer community and young adults are the ones caught in it. It is the sole reason RealTime Cancer exists.

This gap is most evident when looking at community support programs. For example, in 2005, RealTime Cancer raised $75 per new young adult cancer diagnosis (roughly 2000 a year between 15- to 30-years-old). However, if you were to look at the annual revenues of most major national cancer charities and then look at their target audience (i.e. the number of new cancer patients in their target audience diagnosed each year), you’ll discover they raise at least $1,000 per cancer diagnosis each year. Some raise more than $1,500 per patient.

We know we have a long way to go to level the playing field, so to speak, and provide young adults with community support programs similar to those available for younger and older patients. But our mission is crystal clear: create more awareness of the issues and of our programs and raise more money to allow for the growth of our programs and to help more young adults deal. The details of how that will flow occupy more of my time these days than ever.

I can’t help but continue to feel that the best is yet to come!

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