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Search Results for: "skin cancer"/communities

February 9, 2012 By e-Patient Dave 58 Comments

Time to practice what I preach: I have skin cancer again.

Photo of the lesion, Nov. 15
Photo of the lesion, Nov. 15 (click to enlarge, if you really want)

Update Feb. 11: I’ve decided to publish what I want to find in a provider: see this post.

Be sure too to read the substantial information contributed below in comments, some by e-patients and some by participatory providers. This process is interesting to observe!

An odd consequence of speaking at medical conferences is that sometimes my face is displayed, real big, on monitors at the front of a room. That happened in November at the Aligning Forces for Quality (AF4Q) annual meeting in Washington.

At the end, Lisa Letourneau MD, MPH of Maine Quality Counts raced up, pointed to my jaw, and said “You should have that checked.  I think it’s a basal cell.” (That’s the least serious type of skin cancer – see Wikipedia: “Basal-cell carcinoma (BCC) is the most common type of skin cancer. It rarely metastasizes or kills.”) A few days later I took the picture at left, and started watching.

I had a basal cell removed from my nose 30+ years ago. (More on this in a moment.)

To me it was just a shaving cut… but, I realized, it wouldn’t heal. For the next two months I was a slug (a not-engaged patient!), but I did take pictures, and son of a gun it did not get better, even when I thought it was finally going away.

When I had my annual physical recently, I asked my doctor, and he looked and said, “Get a biopsy.”  I did, this week, and today they called. Yup, it’s a basal cell. Thanks, Dr. L!

Remember how you’ve always heard that a warning sign is “a sore that won’t heal”? I guess they mean it. I kept kidding myself, thinking I was continuing to re-injure it shaving. (Not bright, I know.) Then, just before the physical, I ran across a summer photo, and there it was. So I guess it was there longer than I realized.

I’m going to blog this experience, as I try to practice what I preach: get engaged, learn what I can, explore my treatment options, connect with other patients.

[Read more…]

Filed Under: Uncategorized 58 Comments

September 16, 2014 By e-Patient Dave 13 Comments

The diverse nature of patient communities: a prostate cancer patient’s experience

During my illness, my patient community at ACOR.org (now SmartPatients.com) played an important role, but it’s not easy to find a good community for most diseases. (For instance, the most common cancer in the world is skin cancer, and I haven’t found a single smart, active community for its patients.) So several years ago I started a Patient Communities page on this site, to collect whatever information we can find.  Maybe someday we can get some funding or a volunteer team to organize it better, but for now (as patients always do) we’ll make do with what we have!

Last week in Vermont, at the VITL health IT conference, after a workshop session, audience member Damon Lease said he’s found several different communities for prostate cancer, and found that each has its own personality. In my view that’s no surprise – people are different, and there’s no standardized way for communities to form and grow. Consider the diverse nature of the groups Damon found, on this one disease. From his email: [Read more…]

Filed Under: e-patient resources 13 Comments

February 21, 2012 By e-Patient Dave Leave a Comment

Experiences exploring BCC patient communities, part 1

On my first post about my BCC (basal cell carcinoma), seeking patient communities and other information, I was pleased that people submitted four communities.  I posted them to my very informal patient communities page:

  • Basal cell carcinoma
    • EmpowHER basal cell community
    • PatientsLikeMe basal cell skin cancer
  • Generic skin cancer
    • American Cancer Society: http://csn.cancer.org/forum/145
    • Inspire.com: http://www.inspire.com/groups/skin-cancer/

Tonight (Feb 20) I’m exploring them for the first time.  I didn’t find any useful information yet, so you may want to come back another day.:)

  • If you know of other communities, please submit the URL in a comment below.

This won’t be of interest to most people – it’s mostly for people who want to study what a site should be, and the process of exploring.

Preface – my purpose and context

[Read more…]

Filed Under: Uncategorized Leave a Comment

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