Young adults with cancer: The forgotten generation

In my Own Words!

 

Last week was a great week for young adults with cancer in Canada. Nothing concrete has changed, no new treatment or major shifts in priorities, but the major issues surrounding young adults and cancer have been given some big-time profile. It was muchneeded, and much more is needed.

This week the Cancer Advocacy Coalition of Canada (CACC), of which I’m a volunteer board member, launched the tenth Report Card on Cancer in Canada. Within this year’s report was an article I authored, with major help from many, to instigate the dialogue on cancer issues facing young adults (YAs).

Today, I will put my article in my own words–which is to say I might swear. I will certainly use incorrect grammar (hehe), and get a little more riled up than in the report.

Survival and survivorship

It is safe to say that these two issues, which are umbrellas under which many more lie, will be the focus of RealTime Cancer’s life as an organization going forward. We’ll look at them separately.

Last Halloween I wore this awesome brown ultra suede jacket which was my dad’s– in the ’70s. When it comes to cancer survival rates, as a young adult, it might as well be the ’70s ’cause our survival rates haven’t changed since then.

Not only are Generations X and Y unique for our social appetites and innovative thinking, but we are also the only generations that can boast (or bitch) that we have seen none of the advances in medical research in over 30 years (see the graph in my article that looks like a “V,” young adults are in the valley). The kids, adults, and seniors have all seen substantial improvement in survival rates, but what about us?

If you’re a pediatric oncologist looking after the kids, 90 per cent of your patients are under 15. If you’re a medical oncologist looking after everyone else, more than 90 per cent of your patients are over 40. Young adults are 10 per cent of everyone’s work!

Healthcare is no different than any other area of life in this respect, the 10 per cent gets neglected. Cooking dinner for the family is the 90 per cent, cleaning underneath the fridge is the 10 per cent. Getting ready for work in the morning: 90 per cent, getting to the gym before work in the morning: 10 per cent. The report due this week: 90 per cent, cleaning underneath the fridge: still 10 per cent. You follow? I’m sure.

So survival improvement is nil. My next thought was, “What are we doing to improve this in Canada?” We reviewed all new research funding in 2006 which includes research by the Terry Fox Foundation, Canadian Cancer Society, and the federal government (the largest contributor), and found one grant representing less than 0.1 per cent of new research funding focused on a young adult cancer issue.

It was a grant to research fertility preservation–a big issue for young adults–in female patients valued at $61,061 (total research spending was about $76 million).  Here’s where I feel I have to get personal.

Name three prominent cancer survivors off the top of your head. In Canada of course we’d say Terry Fox, in the US they would certainly name Lance Armstrong and Susan G. Komen, and in Aussie land, they definitely say pop star Kylie Minogue. 

Depending on your NHL loyalty you might also mention Mario Lemieux (as I would!), Saku Koivu, and even if you hate the Leafs, you surely know that Jason Blake was diagnosed with leukemia in 2007.

Put the hockey players aside for a moment and you will realize the most prominent cancer survivors ARE young adults. This is irony that hurts.

Back to Survivorship

The other side of this coin is the life side. Survival is whether you live or die; survivorship is your life. It’s what happens from the moment you are diagnosed ’til the moment you go to that tropical island where there are no other men and an unlimited supply of Bud Light (if you know the commercial this is funny, but it’s also always been my view of where I’m going next, hehehe).

Now I’ll never say that cancer is more difficult for young adults than the kids, adults or seniors, because I don’t believe that to be true, but I’ll beat you into submission, if needed, telling you cancer is different for young adults.

First, most of us have to beg, plead, and sometimes, demand the mammogram (or applicable test) to investigate the suspicious lump that is not going away because in the eyes of many “you’re too young for cancer.” The 6,500 of us a year inducted into our YA cancer club say we aren’t.

Second, once the diagnosis has finally arrived, it’s combined with relief and isolation. While the local cancer support group is nice, and I’m sure helpful to many, it’s not relevant for young adults. Most of us deal with a host of other issues, like a loss of independence, fertility, dating/relationships–I could go on, in total isolation from our survivor peers who truly “get it.” This goes on despite a 2006 study that found YA survivors ranked a connection with other survivors higher than support from family and friends, which is alsoimportant, but just not the same.

Third through 100 and so on, life is different for YAs; it just makes sense the same applies when dealing with cancer.

Why the isolation? Because there are only four YA support groups run out of cancer centres in the whole country, and those even have restrictions. In Ottawa, for example, you can’t attend the group unless you are treated at the Ottawa Regional Cancer Centre. Don’t get me started on this one–too late–so if you live in Ottawa but have been or are being treated in another hospital, you can’t go hang out with this group. Bureaucratic bullshit at its best.

Now there is another issue here that I raise hesitantly, partly because I feel the case for more resources, which must include better access to clinical trials, more appropriate treatment and major investment in research on diagnosis, treatment and support, is solid in its own right. 

But when you consider this next perspective the whole issue is even more significant. Here it goes:

The term “potential years of life lost” (PYLL) describes the true impact of a disease at the societal level. It isn’t the one you hear quoted in the news all the time as cancer and heart disease take turns as “Canada’s number one killer,but I argue, and many more besides me with many more letters after their names will, too, that PYLL is the number that really matters and our spending (i.e. healthcare investment) should be based on it.

I ask what has a greater impact on society, 1000 people dying at the age of 80, or 1000 people dying at the age of 30? This is the concept behind PYLL.

For my article I accessed (through Dr. Tony Miller) the data on PYLL for the ages 0-69 years. YAs represent less than 10 per cent (there’s that number again) of all cancer cases in the range, BUT we represent almost 30 per cent of the potential years of life lost due to cancer.

Put the massive impact on the individual, their family, and their friends aside for only a split second to consider that cancer in YAs is a societal issue and one that demands attention.

Enough of the “data talk” for a minute. What I’m saying is the time for change is now, and I, along with RealTime Cancer’s growing community and influence, look forward to influencing that change and I’m prepared to do just about anything to make it happen.

This isn’t the type of issue that gets handled with a few media interviews or a very long email/blog by me. We need help from individuals and organizations big and small. It is time to take our vision to a whole other level and this week was the start of that journey.

The best thing you can do right now is talk it up. By reading this info, you have knowledge that most health professionals don’t event know.

Thanks for your time, hope it was worth the read.

Always…

Live life. Love life.

Geoff

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