Everything Changes - The Guide to Young Adult Cancer

Want to find the best vegan burger shack in town or a late night sushi-karaoke bar? Turn to Zagat. Want to find a good doctor? Now you can turn to Zagat too. WellPoint, one of the country’s largest health benefits companies, is contracting Zagat to create a patient review system of doctors. How egalitarian, how patient powered, how much more can you miss the mark?

Italian Vogue?
This new Zagat system of voting and popularity contests will lead young adult cancer patients (and others) towards making less educated and poorer choices about their doctors. Here are a few reasons why:

1. What if 42 patients give their oncologist a high score because they love the Italian Vogue mags in the waiting room and the friendly smile of their oncologist but don’t know that this doc has four violations pending against her with the state medical board? Zagat is not the answer.

2. What if six patients give their oncologist a low rating because the wait is long and the staff is rude, but they don’t know that this oncologist just flew to MD Anderson last week as the foremost expert in the world on your specific disease type and stage, and presented a paper on a new molecular treatment that has fewer side effects and avoids the need for surgery? Zagat is not the answer.

3. What if a patient on Zagat has extensively researched an oncologist, stating he is the most highly educated in the city in lymphoma care, but the patient is basing this information only on the fact that the doctor graduated from Harvard? Harvard alone does not a good doctor make. Has this doctor published research? Is he or she an active member of the international oncology community? How do they continue to educate themselves? Zagat is not the answer.

Taking Candy from Strangers
If you’re visiting Chicago for the first time and trust a stranger on the street to give you a recommendation for the best pizza in town, the stakes are not so high if their recommendation sucks. But we are talking about cancer, not pizza. You should not take the advice of strangers but rather turn to the most educated, medically astute friends, colleagues, and doctors you know to become your advisors – not a group of joe schmoes on-line. (I talk more extensively about this in the Working The System section of my book Everything Changes.)

I’m not alone in this thinking. Most of the medical ethicists and docs interviewed on the subject in the New York Times agree.

How you do decide what doctors to use? Do you think the Zagat guide is a good idea? Would you use it?

I spent five hours sitting on a dumpster dived sofa in an apartment in San Francisco, transfixed in conversation. I was interviewing Wafa’a, a lymphoma patient in her early twenties, for my book Everything Changes. We ranted about parents, dating, and loneliness. At the end of our rapid-fire conversation, Wafa’a clearly, slowly, and eloquently stated a list of pointers she would give to newly diagnosed patients. I thought I’d make my own list too:

1. Climb. If it makes you feel good to climb a mountain or run a marathon with cancer, fantastic.

2. Cry. If you cry yourself to sleep and cannot scrape your depressed head off the pillow in the morning, that’s pretty normal too.

3. Reality. Don’t believe the hype that we can choose whether or not cancer is going to get the best of us. Cancer is not an attitude. It is a disease.

4. Smash. Put one foot in front of the other, roll with the punches, yell, cry, and break things as needed. (I recommend smashing a dozen eggs in the shower: cheap, satisfyingly messy, yet easy to clean up.)

5. Ask. Ask for help when you need it from people who are good at giving it.

6. Learn. Make educated choices while realizing there is no guarantee that the right choice will yield desirable results.

7. Love. Love those who support you and take a break from people who just don’t get what you are going through.

8. Science. Get constructively pissed off at the system, but stay curious about science.

9. Change. Don’t work too hard on using your cancer experience to change your outlook on life; it will do that all on its own. (And if it doesn’t, don’t worry, some of us prior to cancer already had great outlooks that didn’t need much changing.)

10. Vulnerability. Create your own definition of strength and let it change as needed. For me, strength comes from recognizing that I am vulnerable.

What are some cancer truths, or pointers, you would give to newly diagnosed patients?  Are there any of mine that you disagree with?