Wednesday, May 13, 2009

My Advice: Don't Get Cancer

DISCLAIMER: I realize as I write this that not all cancers are preventable. In fact, medicine and science still do not understand the cause(s) for all types of cancer. I also believe that it is irresponsible to suggest that childhood cancers are preventable.

If yo
u want my advice, don't get cancer.

It's not
that cancer today is always an incurable disease or automatic death sentence; quite the contrary. Today, more than any time in history, most types of cancer are very treatable and curable, especially if they are caught early through cancer screening. For example, the type of leukemia that I was diagnosed with at age 22, acute promyelocytic leukemia, has a cure rate of about 75% now compared to just 33% back in 1988.

So you see, more and more people diagnosed with cancer are alive today. And that's a good thing, right?

Remember that old saying,
"An ounce of prevention is worth a pound of cure."
Well, when you are diagnosed with cancer, you are trading your ounces of prevention for pounds and pounds of cure. The cure comes in the form of surgery, chemotherapy and radiation. The cure can be very toxic. The cure can actually kill you. The cure kills lots of healthy cells in your body in addition to the cancer cells. The cure has some really nasty side-effects.

But if you have cancer like I did, I know you aren't thinking about this, because it is pretty clear: if you don't attack the cancer, you won't survive. So if, like me, you get cancer, don't feel bad about yourself and certainly don't waste your time trying to figure out if something you did or didn't do caused your cancer. You have more important things to worry about.

I just had chemotherapy, but because I had leukemia, I had a lot of chemotherapy. They gave me so much chemotherapy that the doctors completed wiped out my bone marrow and just left the stem cells. From the stem cells, I regenerated my bone marrow and all my blood cells four times---four courses of chemotherapy. The only patients who got more chemotherapy than I did were the ones who had bone marrow (stem cell) transplants; they got a bit more which wiped out their bone marrow and stem cells.

When I was treated for leukemia back in 1988, statistically I only had a 33% chance of survival. My doctors were focused on attacking the cancer; they weren't planning for the long term each time they admitted me to the hospital for my next round of chemotherapy. We were all elated when I made it through treatment alive and cancer-free and I became the newest member of a small but growing group, leukemia survivors. I had beaten the odds.

Maybe I was naive or uninformed, but when I beat cancer, I thought I was done and my days of illness were over. I honestly thought I got to go back to my life, pick up where I left off and, once I made it to the magical 5 years of remission and was "cured", I'd never have to so seriously worry about my health again. Maybe, because there really weren't a lot of leukemia survivors around in 1988, everyone on my medical team truly believe the same thing too. But for me, the cruel irony of having cancer is that once the cancer treatment was over, my days of living with illness were only just beginning.

What I am living, and the medical community is learning, is that chemotherapy (and radiation) causes long-term late effects. The cure is very toxic. The cure can injure your body. The cure damages healthy cells and organs in your body. The cure has long-term side effects.

For years I have intuitively known that I live in a body that doesn't function quite right. I used to joke that my doctors' forgot to give me the owner's manual to this new, cancer-free body they created for me. My primary care doctors scratched their heads when I came reporting the most unusual symptoms and never quite understood what was wrong with me. After about 10 years, I started feeling like a hypochondriac, when in reality, I was experiencing unrecognized and undiagnosed late effects from my cancer treatment. It wasn't until 18 years after my cancer diagnosis that UCLA opened the LIVESTRONG Survivorship Center of Excellence and began in earnest to start tracking and researching the late effects of cancer survivors like me.

So my advice is don't get cancer, not because you can't beat it, but because you don't want to survive and live with chronic health problems like me.

And if you are a long term cancer survivor like me, please find a survivorship clinic like the one at UCLA so you can become informed about your risks for developing late effects and what you can do to screen for and treat them. Please visit My Favorite Links for the Cancer Surivors Project, Long Term Cancer Survivors List and Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
which are all resources that can help you get started.

I am grateful for living in a time when cancer is a treatable illness. I am grateful for being a "first generation" cancer survivor. My hope is that one day medical science develops cancer treatments that kill only cancer cells, leaving healthy tissues intact and sparing future generations of cancer survivors from late effects.

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