Monday, June 25, 2012

Melanoma online resources

Question of the day: Does the well-informed, well-supported cancer patient have a better chance of survival?

My answer: Sure, that totally stands to reason. If you know what to expect (as best you can) from your type of cancer and understand your treatment options, then you can make wise, informed decisions about what’s best for you if and when the time comes to make them. And if you have the emotional support of others against whom you can test your ideas, you can further improve your odds. It helps to have people in your life who can “talk cancer” without a lot of drama. In my experience, conversations of any emotional depth rarely happen with medical professionals—they’re too busy and aloof to bother. It’s too bad there isn’t a reimbursement code for providers who will drink a microbrew with a cancer patient at the corner bar. Now that’s  a form of healthcare reform I could get behind.
Fortunately, it’s not hard to stay reasonably well informed about melanoma. There are foundations and other nonprofits, blogs and assorted news sites that collectively provide patients and their caregivers with lots of useful and (mostly) reliable information (see list below). I’ve also found it helps to cultivate friendships with others who are contending with melanoma. The best people are those in similar clinical circumstances with whom you match up intellectually. I’m happy to be the emotionally supportive half of a friendship, if necessary, but there are times when I appreciate some real give and take. In cancer care, we’re all beggars and it helps to have friends to tell us where we can find a morsel of bread when we’re hungry.

The Melanoma Research Foundation, which puts on a series of symposia around the country, does as much as any organization to keep melanoma patients informed and supported. At its annual Seattle meeting a few weeks ago, the oncologists who served as program directors were patient and responsive toward all sorts of random questions. Nothing takes the place of expert opinion of this caliber. It might take a psychiatrist to explain this, but I left the event feeling my “cancer burden” had been lifted. If indeed information is power, then occasions when patients can get questions answered to their satisfaction by those with expertise should be made more broadly available and better publicized. We would be healthier for it.
This list of online resources for those with melanoma is incomplete, but it's at least a start for those building up a melanoma database. What you won't find here is a place where serious questions about melanoma can be answered by medical professionals. Peer-to-peer bulletin boards have their place, but it shouldn’t take an appointment and a trip across town (or longer) to get an urgent question answered by a professional. Where's a good online onco-doc when you need one?

·        Melanoma Research Foundation: www.melanoma.org

·        International Melanoma Foundation: www.melanomaintl.org

·        Shade Foundation: www.shadefoundation.org

·        Aim at Melanoma: www.aimatmelanoma.org

·        American Cancer Society: www.cancer.org (search for melanoma)

·        National Cancer Institute: www.cancer.gov (click on melanoma)

·        “Black is the New Pink”: www.blackispink.blogspot.com

·        American Society of Clinical Oncology: www.asco.org

·        Skin Cancer Foundation: www.skincancer.org

·        Melanoma Resources: www.melanomaresources.info

·        Assorted melanoma blogs: www.xraytechnicianschools.net/features/melanoma

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