Thursday, February 16, 2012

How I spent My Half Day Off - Patient Day with the MRF

Dr. David Ollila and the McDonald Family
I recently attended the “Melanoma Patient Day” symposium held by the Melanoma Research Foundation along with the University of North Carolina Division of Surgical Oncology and the UNC Department of Dermatology.  The Rev. Carol was there as well and I encourage you to read her account of the day.  (Yes Carol, that’s two straight times I’m riding your coat-tails).  Still, I’d like to share a few observations and information that I learned...most of them shared by Carol and some a little more unique.
I was surprised by the first presenter who basically stated that there’s no proof (yet) that sunscreen helps to prevent melanoma.  There IS a recent study in Australia that suggests it MIGHT help.  I had to wonder if his (Dr. Antony Young) findings have been repeated by other studies, or if his results stand alone.  This seems to be contrary to almost everything else we read…so I’ll keep a close eye on this topic and keep you posted on what I find.
Dr. Young also mentioned that sunscreen is designated as a cosmetic in Europe, but as a drug in the US.  He stated that in response to an attendee who asked him if the chemicals in sunscreen are safe.  He assured us that the FDA, which monitors sunscreen, has performed their due diligence to assure the lotions are safe.
One last Dr. Young observation…he states that a person should use roughly 100 grams of sunscreen a day to protect one’s skin.  This equates to 3.5 ounces of lotion a day.  That’s about half a bottle of standard sunscreen each day.  Dr. Young acknowledged that sunscreen isn’t cheap, and cited one calculation that a family of four taking a week long holiday in Spain might likely spend more money on sunscreen than the holiday itself.
The second presenter discussed “pink” melanoma, or that which has little or no pigment.  It was pretty technical, but everyone ended up scanning their arms and legs after this one…it was rather eye-opening.
Dr. Keith Amos presented a very graphic discussion of surgical margins…aka, how much to cut out the melanoma and how to stitch it all back up.  I would have preferred a disclaimer at the beginning of this one…it was very graphic.  But it was also quite interesting to see advances in such work.  Who would have thought there’d be “advances” in reducing scars?
The discussion on Lymph Nodes by Dr. Justin Baker was interesting to me, despite it also being rather technical.  Since I don’t have melanoma, I have only read about people having lymph nodes removed, etc.  But I didn’t really have a full understanding of why.  This presentation taught me.
Nurse Patricia Long discussed the lack of, and therefore the need, to have a celebrity face to melanoma.  She cited the Michael J. Fox Foundation as well as Live Strong and the Christopher Reeve Foundation.  But she noted there was no one speaking for melanoma, despite a few celebrities that she presented as having it (Sam Donaldson, Cybil Shepard, and Arnold Schwarzenegger to name a few).  She mentioned the counter-melanoma group…mostly Jersey Shore and a show I’d not heard of before called Sunset Beach (I think) which was a reality show based out of a tanning salon (think Miami Ink, but tanning beds instead of tattoos).  While this had some interesting facts, I wish there could have been some additional discussion.  Unfortunately, it was time for the group to take a break and folks high-tailed it to the snack bar before one hand was raised for questions.  I would like to have asked what the bigger organizations (such as MRF) were doing to try to secure a celebrity endorser?  (Ironically, I saw Anderson Cooper’s piece for “Out Run the Sun” the night before).  Also, I would like to have at least informed the crowd that there is a vast and growing online community for support, education and advocacy.
During the break, I had the privilege of talking with a few folks. 
·         One couple is starting a new website called Cancer Warriors, sharing a healthy and more holistic type of approach fighting melanoma.  (The website is not yet complete, but I’ll share it upon release). 
·         I talked briefly with a gentleman named Dennis.  He caused the first round of applause at the symposium before it even started by standing and holding a sign that read “Stage 4 Melanoma Survivor.”  It was a touching moment. 
·         I introduced myself and talked with Shelby Moneer, Health Educator from MRF.  I brought “Black is the New Pink” business cards with me to help spread the word about this blog and the Facebook community.  She saw my card and said, “Hey, we ‘Like’ you!”  I was flattered that the MRF ‘Likes’ my Facebook page.  I told her I liked them back!
·         Three other individuals (I am SO bad with names) approached me once they over heard my BITNP connection.  I was thrilled t have ‘real’ people before me expressing thanks for my shared links, articles and thoughts.  I had trouble wiping a smile from my face the rest of the day!
Back to the presentations, there was one scheduled prsentation regarding “Protecting Teens from Tanning Beds.”  Unfortunately, this one was bypassed for some reason.  I was quite disappointed in that this is a very timely subject and I was interested in what North Carolina might be doing to address tanning beds in the legislature.  I’m aware of one bill that floundering “in committee” but would be anxious to know if there is any new legislation planned.  I guess I won’t know for a while.
Dr. Georgina Long talked about the history and details of BRAF.  I found this one a bit technical, but again quite informative.  Great results and they’re now starting clinical trials for Stage 3.
Dr. Moschos gave a presentation on brain metastasis.  This was probably the most technical discussion and I got rather lost.  What caught my attention most is that he recently moved to UNC from the University of Pittsburgh, where my brother first sought treatment.  I believe I recognized this guy’s name and wondered if he had treated Jeff.
Lastly was a very touching presentation by the McDonald family who chronicled their now eleven year old daughter’s journey through melanoma.  They first thought it was a tick, then a wart, then went months before having this growing location on her inner thigh removed by a plastic surgeon.  They finally got a diagnosis and it was touching to hear of the obstacles she overcame.  I caught up with the McDonalds afterwards to thank them personally and share my brother’s story (and another business card) and discovered that they line in the same town as I!  I hope to find them visiting Facebook or BITNP soon!
Overall, it was a great experience.  I thoroughly enjoyed meeting Carol and sitting nearby as we watched the presentation.  I also enjoyed meeting others and hope to meet again soon.  I plan to attend this symposium again next year and invite everyone to visit an MRF (or other organization’s) educational forum near you!


  1. Great Job...Inspired by your work. Very informative and def. a topic that my veins pop with Passion when I hear someone talk about it. Whether they are informed or misinformed, I'm eager to join the conversation and either add, or correct misconceptions. Thanks for letting us all know what is going on. What a wonderful thing that you were there. You are appreciated and of course, naturally Rev. Carol...You too! :-) Jen Christie

  2. WOOT... thank you for sharing. Now I am on the hunt for the specifics on weather sunblock is truly doing its job. I am so glad you were able to attend this and share with others. I do look forward to hearing more.

    Thank you!!!

  3. Looks like it was an informative day! Dr. Amos was my surgical oncologist. I remember him telling me I'd be left with a 'sizeable defect" on my back but that the keystone flap he was doing was the best option. He was a fabulous doctor and I still keep up with him. He made a very scared girl feel more at ease with the whole cancer deal...

  4. Dr. Amos gave a great presentation and was quite enthusiastic and personable...I'm sure it was great to be under his care. And thanks to his presentation, I know what a keystone flap is!

  5. glad he gave a good presentation. and yes the keystone flap - looks like a shark took a bite out of my back ;) but thankful he was taking care of me.