Melanoma Awareness Month in 2020

I am writing this on May 1, 2020.  Today is the first day of Melanoma and Skin Cancer awareness month.  May is typically a month where you’ll see news stories on skin cancer awareness and sun safety.  You’ll often see a charity run or walk occurring on the weekend.  It’s a good chance such an event is held to raise money for the Melanoma Research Foundation, AIM for a Cure, or some other melanoma organization. 

However, this year, the medical news is dominated by COVID-19…the pandemic sweeping the world.

There will be no gatherings for a walk.

There will be no gala.  In May, we are slowly trying to reopen the world, but it’ll be a slow and cautious process.  People are not so concerned about skin cancer.

Usually, I would point out that people die of melanoma at a rate of greater than one person an hour. That’s over 9,000 people who will be lost this year.  However, the virus has claimed nearly 63,000 U.S. citizens at the time of this writing within the last 3 or 4 months. 

These deaths do not reduce the significance of the melanoma fatalities by any means. Still, it’s easy for the general population to miss during these times.  I hope that all other deaths outside of the virus will not be forgotten.  The families affected by a death from melanoma, any cancer, heart disease, or any other fatal illness grieve as much as anyone.  This year it might be even harder because the families are not allowed to visit the sick in the hospital.  COVID-19 is killing not only those it affects directly but kills the opportunity to pass on with family near them in the hospital.  Afraid and alone.

2020 is not a typical year.

Please keep all who suffer in your thoughts this year.  Keep those who are trying to keep our sick comforted in your thoughts.  Keep in your thoughts those families who can’t say goodbye, or can’t attend the funeral.

It’s still Melanoma Awareness month, and I plan to post a few more thoughts and reminders.  I encourage you…beg you…to wear sunscreen. I still encourage you to visit your dermatologist on at least an annual basis.  And while you can’t walk or run in a charity event, you can still donate money to the melanoma organization of your choice.

Be safe out there.  And be sun-safe as well.

Melanoma Does Not Discriminate

In this day and age, the term “discrimination” gets discussed more and more.  It seems like not a day goes by where there isn’t some public policy or some celebrity statement that gets labeled as discriminatory.  It’s true that we all have some bit of prejudice within our personalities.  Whether it be an opinion offensive to many or a private irritation with someone who differs from you in some way, we humans all discriminate on some level.  It’s true. 

There are, however a few things in this world that do not discriminate.  The weather.  Aging.  Hunger.  But of course there is one thing in particular I need everyone to understand that does not discriminate.  Melanoma

My Facebook page is approaching 6,000 likes.  I have been followed by people in all 50 states as well as 69 countries…from Algeria to Zimbabwe.  Each one, I assume have been somehow touched by melanoma.  Believe it or not, I have opened the profiles of every person that has followed the “Black is the New Pink – Fight Melanoma” Facebook page.  Every.  Single.  One.  And while not each one allows access to personal information, most share a photo or two that depict not on what is important to each one’s life, but a bit of their personality.  I can assure you that melanoma does not discriminate.

It is true that melanoma is more prevalent in people with lighter toned skin and blonde or red hair.  But there have been many followers of all skin colors all the way to the darkest of dark.  In fact, since it’s harder to detect melanoma on darker skin, the cancer is usually detected at a much higher and deadly level when ultimately found.  It’s true; people of dark skin should wear sunscreen and see the dermatologist as often as someone with pale white skin like myself.

Religion?  No discrimination there as well.  Christian, Muslim, Buddhists, Hindus, Atheists…you name it and someone from each religion has been touched by the black cancer.  No matter the name of your god or spiritual guide, you flesh is as susceptible as the person’s next to you.  Protect yourself!  Especially you sun worshipers!

Politics?  Whether you “feel the Bern” or “Trust Ted,” your political beliefs have no effect at rejecting melanoma.  Democrats, Republicans, Libertarians, Independents, Socialists, Communists, Anarchists…I’ve had them all stop by my Facebook page.  They’ve all been touched.

Do you preach the moral high ground?  DO you work in the adult film industry?  Are you fighting of an addiction?  Do you work as an executive for a Fortune 500 company?  No matter your social or economic status, you all share in that 1 in 50 chance of getting melanoma, and 1 in 5 chance of being diagnosed with skin cancer.

Do you live along the equator?  South Africa?  Iceland?  Certainly, the more exposure you have to the sun, the greater your risk of melanoma.  However, there are melanoma warriors on every continent at every latitude and longitude on the globe.

No, melanoma does not discriminate.  But it can be resisted.  As stated countless times, protect yourself by wearing sunscreen and protective clothing and gear.  Stay out of the sun at peak times and seek shade.  Wear sunglasses and hats.  And perhaps most importantly, check your skin!  Check it yourself at least once a month and monitor any changes.  Visit your dermatologist at least once a year!  Prevention and detection are the best ways to fight melanoma.  No matter who or what you are.

FDA Proposal and the Need for Continued Education on Melanoma Awareness

Today, December 18, 2015, the Federal Drug Administration announced a proposal of new rules that would ban anyone under 18 from using tanning beds or tanning booths.  In addition, they would require that tanning facilities obtain a client’s signature that he/she acknowledges the risk to one’s health when using such devices.  They also propose that all tanning devices be labeled with a warning that UV radiation can cause skin cancer, skin burns, premature skin aging, and eye damage (both short- and long-term).  This is an effort by the FDA to “improve consumers’ understanding of the risks related to UV radiation exposure.” ¹ 

The primary resource for the FDA’s decision is a 2012 publication by the British Medical Journal (“Cutaneous Melanoma Attributable to Sunbed Use: Systematic Review and Meta-analysis”) which concludes that “sunbed use is associated with a significant increase in risk of melanoma.  This risk increases with number of sunbed sessions and with initial usage at a young age (<35 years).  The cancerous damage associated with sunbed use is substantial and could be avoided by strict regulations.”²  The study cites well-documented statistics such as tanning beds may emit 10-15 times stronger UV radiation that the sun, UV radiation is classified as a carcinogen, and tanning bed use results in a 75% increase in risk of melanoma (from 40% to 228%) when indoor tanning starts during adolescence or young adulthood.   

The public (including up to 19,000 tanning salons) has 90 days to share comment on the proposal.

This is indeed a great day in the fight against skin cancer and melanoma.  For years, the FDA has been asked to take more action against the use of tanning beds.  Citing the administration’s bans and warnings on tobacco use, the argument was made that more cases of cancer were caused by tanning beds than cases of lung cancer caused by cigarettes.  Today’s action by the FDA is a long time coming.

But this does not close the book on skin cancer prevention.  While there will be harsher warning labels attached to the equipment, the age restrictions apply only to facilities that offer tanning services, such as tanning salons and “health” clubs.  The restrictions do not apply to personal tanning beds.  Additionally, once an individual reaches the age of 18, tanning bed use will be allowed, although the FDA proposal requires disclosure of health risks before allowing an individual to use such a device.  The only real weapon against such use will be in public education.

There are efforts and organizations that are devoted to educating the public on the risks of UV radiation, both from tanning devices and from the sun.  One such organization is the Melanoma Education Initiative.  Founded in 2011, the MEI has been raising awareness about the dangers of melanoma by visiting middle schools with an interactive presentation, visiting high schools and colleges with harder-hitting presentations including first-hand and graphic accounts of melanoma, distributing educational material at community health fairs, and participating in health and wellness events for companies and organizations.

When asked why founder Beth Mancini didn’t just join forces with existing organizations such as the Melanoma Research Foundation, AIM at Melanoma, or others, she responded that “many organizations out there raise money for research which will benefit patients down the road, but we wanted to save lives in a more immediate way by educating people about early detection and prevention. We couldn't find an organization … educating in the way we wanted to, thus, Melanoma Education Initiative was born.”  The MEI was founded and continues advocating near Akron, OH, however Beth. Mancini and her family now reside in North Carolina.  She hopes to expand the MEI efforts within the Tarheel State and beyond.

Much like the aggressive anti-tobacco “truth” campaign to curb youth smoking in the US, the MEI and other organizations hope to equally educate teens and young adults about the dangers of UV radiation.  I encourage you to offer your support to the MEI, or any such educational group in your area as they are in desperate need of volunteers.  While today’s FDA announcement is a red-letter date in skin cancer awareness, the real work of education the public needs to continue.

For more information on the Melanoma Education Initiative, visit their website at http://www.melanomaeducationinitiative.org/.  You can also contact Beth Mancini directly at ewmancini@melanomaed.org.

1.          DEPARTMENT OF HEALTH AND HUMAN SERVICES; Food and Drug Administration; 21 CFR Parts 1002 and 1040 [Docket No. FDA-1998-N-0880 (formerly 1998N-1170)] RIN 0910-AG30 Sunlamp Products; Proposed Amendment to Performance Standard.
2.           Boniol, M., P. Autier, P. Boyle, and S. Gandini, “Cutaneous Melanoma Attributable to Sunbed Use: Systematic Review and Meta-analysis,” British Medical Journal, 345:e8503, December 2012.

Jimmy Carter's Cancer and a Guilty Thought

I had a thought this morning for which I’ve felt a bit guilty all day. 

As I was getting ready for work, I saw the story on television where former President Jimmy Carter was going to share more details about his cancer later in the day.  I couldn’t recall such an event before regarding cancer.  Usually, one announced their cancer diagnosis right away…there was no waiting for an announcement of the specific details later.  “Steven Jobs announces that he has pancreatic cancer.”  “Shannon Doherty reveals breast cancer diagnosis.” “Jimmy Carter has….cancer to be revealed next week.”

I wondered what type of cancer he might have, and it occurred to me that whichever cancer he has will get a real boost in awareness and publicity.  I stopped short of it, but I came damned close to wishing that President Carter would announce that he has melanoma.

All of you should know that I would never ever wish cancer, especially melanoma on any person…not even my worst enemy.  Still, there’s always been this near desperation to have a celebrity representative for “our” cancer.  Bob Marley has been our go-to guy…the perfect example of how melanoma can attack the young and those with darker skin.  However, we still lacked a mainstream face, and don’t think that we didn’t search for one.  Remember how we all shared that Hugh Jackman had skin cancer?  Sure, it was basal cell carcinoma (BCC), but it was skin cancer and a celebrity was talking about it.  We were so “happy.”  And yet, none of us are really ever happy for anyone diagnosed with cancer, even BCC.

As it turns out, Jimmy Carter did indeed announce that he has melanoma that has metastasized to his brain and liver.  I feel awful for him and his family.  While there have been many who have survived a Stage IV melanoma diagnosis, the survival rate is still only 15%.  Many have beaten the odds.  More have not.  This includes my brother Jeff.

It was 5 years ago…almost to the day….that my brother announced that he had Stage IV melanoma that had metastasized to his brain and lungs.  I recall talking to him and he stated how he actually felt quite healthy.  He had plans to go to work for a few months and take some time off whenever the treatments made him feel sick.  He simply couldn’t believe he had cancer, especially cancer in his brain.  Less than a month later, I visited him and he could no longer go to work.  He needed a cane to walk.  His memory and brain functions were diminishing.  He, frankly, looked like he had cancer.  Two months after that, he was gone.

While the prognosis remains dim, President Carter has a much better shot at survival than did my brother.   He is being treated with an immunotherapy drug called Keytruda.   This and several other drugs simply didn’t exist five years ago.  Amazing research has occurred.  However, what remains relatively low on the radar is awareness about melanoma.

The public continues to see melanoma as just another skin cancer.  Just like Hugh Jackman’s BCC, many people think that melanoma can be cut out and all that remains is a large bandage on the nose.  This is simply not the case with melanoma.  As with Mr. Carter, melanoma can form inconspicuously on the skin and spread to other parts of the body if it remains undetected.  It can spread to the liver, the lungs, the brain…anywhere!  It can start anywhere on the skin, including places that never see the sun.  (Yes, even “those” places).  It can start in your eyes or in your mouth.  It is simply one of the nastiest and sneakiest cancers there is.  But make no mistake, no matter where it might occur, it’s still melanoma.

One of my good friends and fellow melanoma awareness advocates (Respect the Rays) posted the following on Facebook today:

“I really hope the media starts calling Jimmy Carter’s cancer diagnosis what is it…melanoma.  It’s not liver cancer…or brain cancer.  It’s melanoma that has spread (metastasized) to his liver and brain.”

It’s a common misconception that melanoma in the brain is brain cancer, or that melanoma in the lungs is lung cancer.  It’s not.  It’s melanoma.  Even my brother had a tough time grasping that.  

When I last saw Jeff, we were playing cards.  When he lost the game, he joking said to me, “yeah…big deal that you beat a guy with brain cancer!”  He always looked at the lighter side of life.  Another time, we were discussing various cancer awareness colors.  “Black is for melanoma, white is for lung cancer, and gray is for brain cancer!  Could I have three more boring colors?”  Again, I loved Jeff's humor, but the fact is, he had only one cancer, and that was melanoma. 

The same is true of President Carter.  He has melanoma.  As a result, the world might learn a little about the disease.  And despite my early morning thought, I really wish he didn’t have it. 

I wish there was no melanoma at all.

A Month of Facts

May has come and gone this year.  Melanoma Awareness Month 2015 is over.  But I’d like to think that the results of actions taken this month will extend well into the following months.

I decided to take my action by sharing a skin cancer or melanoma facts throughout the month.  Each day, I posted a specific fact about the cancer.  The only exception was on Melanoma Monday where I posted a plea to simply be aware of melanoma.  Some people doubted particular facts, but I assure you that each was quoted from a legitimate source.  In most cases, the true raw source was available from the source I cited.  For instance, I read the fact that UV radiation is a proven carcinogen, which was cited from the Skin Cancer Foundation website.  The true source listed within the site was the National Toxicology Program. Report on Carcinogens, Twelfth Edition. U.S. Department of Health and Human Services, Public Health Service, National Toxicology Program. 2011: 429-430.  It was a little hard for me to fit all that in the space provided in each fact snippet, so I simply referenced the Skin Cancer Foundation as my source.  If you doubted any of my sources, please dig a little more to find the raw source.

The most doubted, yet most shared fact was that more people develop skin cancer because of tanning than develop lung cancer because of smoking.  In case you wish to research this a bit more, the raw source was from the following: Wehner M, Chren M-M, Nameth D, et al. International prevalence of indoor tanning: a systematic review and meta-analysis. JAMA Dermatol 2014; 150(4):390-400. Doi: 10.1001/jamadermatol.2013.6896.

Anyhow, I was asked a few times to share all of the month’s fact at one time, so you’ll find the entire list and the general sources lists below.  But before I share the list, let me make a few statements. 

First of all, many of the statistics I've shared relate to cancer and death.  You can change these statistics!  You can help prevent melanoma primarily by protecting yourself from the UV rays and seeing your dermatologist regularly. If we prevent the disease, the depressing and alarming statistics would no longer exist.

Secondly, for those of you who have melanoma, the statistics I've shared apply to people in the past…they do not apply to you personally.  Statistics do not define your fight…your hope…your triumph.  You do! 

Lastly, let me share a few more statistics.  I posted 31 different facts.  These facts were read by over 325,000 people on Facebook alone.  The facts were shared on Facebook a total of over 4,800 times.  I shared the facts on Twitter and Instagram as well, so the exposure extended even further.  This has been a true example of spreading melanoma awareness.  It indeed spreads and it works.  Grassroots campaigns such as Black is the New Pink and countless others work.  Please, please, please continue to spread awareness to your friends, families and total strangers.  It makes a difference! 

Thank you to each any every person who read, liked, or shared these facts during Melanoma Awareness Month!  Also, thank you to staff member Donald at the Waterside Resort in Hilton Head Island who helped me work out some technical glitches with my tablet so that I could continue posting these facts even while I was on a family vacation!

Here are all the facts:

Source	Statement
SCF	One out of every five Americans will get skin cancer in their lifetime.
ACS	Each year there are more new cases of skin cancer than the combined incidence of cancers of the breast, prostate, lung and colon.
AAD	The annual cost of treating skin cancers in the U.S. is estimated at $8.1 billion
	The literal definition of "melanoma" is "black tumor."  Today is Melanoma Monday.  Please wear black today to help up raise awareness and to honor those touched by melanoma…past, present, and future.
SCF	About 90 percent of nonmelanoma skin cancers are associated with exposure to ultraviolet (UV) radiation from the sun.
MIF	Melanoma/skin cancer is the most underfunded of all cancers by federal and private agencies
http://mfne.org/	Melanoma accounts for 5% of all skin cancers and 71% of all skin cancer deaths.
AIM	The incidence of melanoma has increased 15 times in the last 40 years. This is a more rapid increase than for any other cancer!
Cleveland Clinic	Melanoma is the most common cancer in women ages 25 to 29
Cleveland Clinic	Melanoma is the second most common cancer in women ages 30 to 34, as well as in men ages 30 to 49.
http://mfne.org/	Thirty percent of all melanoma in men arises on the back
AAD	Melanoma is the fastest growing cancer in the U.S. and worldwide.
About.com	Melanoma often starts out as a mole and can be removed if caught early.
MIF	From 1970 to 2009, the incidence of melanoma increased by 800 percent among young women and 400 percent among young men.
ACS	In 2015, it is estimated that there will be 73,870 new cases of melanoma in the United States
AAD	One in 50 Americans will develop melanoma in their lifetime.
AAD	On average, one American dies from melanoma every hour.
Cancer Research UK	The average age for melanoma diagnosis is 50, compared to other cancers, which is closer to 65-70 years old.
AAD	In 2015, it is estimated that 9,940 deaths will be attributed to melanoma — 6,640 men and 3,300 women.
AIM	People under age 45 account for 25% of all melanoma cases.
AIM	10% of all people with melanoma have a family history of melanoma.
SCF	Of the seven most common cancers in the US, melanoma is the only one whose incidence is increasing.
SCF	On average, a person’s risk for melanoma doubles if he or she has had more than five sunburns.
SCF	Regular daily use of an SPF 15 or higher sunscreen reduces the risk of developing melanoma by 50 percent.
SCF	Ultraviolet radiation (UVR) is a proven human carcinogen.
SCF	More people develop skin cancer because of tanning than develop lung cancer because of smoking.
SCF	Contrary to popular belief, 80 percent of a person’s lifetime sun exposure is not acquired before age 18; only about 23 percent of lifetime exposure occurs by age 18
2011 study on solar altitude	UV eye exposure is greatest during early morning and late afternoon when the sun is lower.  Wear your sunglasses!
EPA	Cloud cover reduces UV levels, but not completely. Depending on the thickness of the cloud cover, it is possible to burn on a cloudy day, even if it does not feel warm.
EPA	Surfaces like snow, sand, pavement, and water reflect much of the UV radiation that reaches them. Because of this reflection, UV intensity can be deceptively high even in shaded areas.
My Brother Jeff	Melanoma may start on your skin, but it can spread to your lungs, brain, and other organs.  It can kill you.

  

Melanoma Awareness...It's That Simple!

Source: dollarlanguage.com

After my brother passed away from Stage IV melanoma, I had questions; simple questions really.  What is melanoma?  How does one get it?  How does one prevent it?  How can I know if I have melanoma?  I browsed many websites and read many articles from different perspectives.  The answers I formulated were relatively simple as well.  I was astonished that my own ignorance of melanoma could have been easily eliminated by some simple information, so I decided to share my findings with others through my efforts in “Black is the New Pink.”   My guess was that sharing such simple messages would enlighten others and that would be that.  There would be no opposition to simple fact, right?

It got far more complicated than I ever imagined.  For each simple message, there has been some type of opposing and obstructive point of view.  Pro-tanning.  Anti-sunscreen.  Big Pharma Conspiracy. There have been times that I wondered if sharing the message was worth the hassle.

It is.

If I was to imagine a conversation to summarize the message and opposition, it would probably go something like this:

Me: Melanoma is a skin cancer…

 Them: Oh thank goodness!

Wait…what?  What is good about that?

Well, melanoma is just skin cancer, so it’s not a really big deal.

No, that’s not true.  Melanoma is a skin cancer, but it’s so much more.  It’s one of the most deadly and aggressive cancers that exists.

But you can just cut the melanoma out…right?

Yes, if caught at an early stage, but it can spread to other organs very quickly and be very deadly.

But it’s not as deadly as other cancers.

It’s true that there are more cases of other cancers, but one person dies of melanoma every hour.  While most cancer deaths are decreasing, melanoma deaths are on the rise.

It can’t be all that deadly…I’ve never heard anyone famous dying from it.

Have you heard of Bob Marley?  He died from melanoma that occurred on his toe.

Yes, I know who Bob Marley is, but I thought you said melanoma is a skin cancer.  How could he have got it on his toe?

Melanoma is deadly that way.  It can spread all over or even form in places other than the skin, such as the toe, the eyes, the genitals…all over.

So what causes it?

Many things, but mostly it’s caused by ultraviolet radiation from the sun or tanning beds.

Yeah, but tanning beds are safe because they’re controlled.

Source: askanesthetician.wordpress.com

No they’re not.  Some tanning beds can emit up to 12 times more radiation than the sun!  It’s my hope that legislation will pass across the country that would ban minors from artificial tanning.

I believe the government should have no right to dictate such things.  The parent should be responsible for determining whether or not a child can visit a tanning salon.

Many parents simply don’t understand the dangers of tanning.  There are many young adults who have melanoma now because their parents allowed them to go tanning as teens.  Such age-limiting laws have been in effect for years to protect children from parents’ uneducated decisions.  Alcohol, smoking, pornography, driving, gun use…the list goes on.  Tanning is no different.

But I’ve read that tanning beds are good for you.  They give you Vitamin D.

That’s not true.  Most tanning beds emit UVA rays which have nothing to do with Vitamin D production.  There are some UVB beds, but dermatologists recommend using diet and supplements to increase your Vitamin D.

What about psoriasis or seasonal effect disorder?  I hear that tanning beds cure those.

No they don’t.  The National Psoriasis Foundation does not endorse the use of tanning beds, and SAD is treated by a different kind of light.

Well, at least you can get a base tan from a tanning bed and that will provide you with protection while you’re on vacation.

Not really.  In fact, there is no such thing as a healthy tan.  Even a base tan is a sign of skin damage.  The most SPF a base tan can provide is around 2 or 4, which is hardly enough to protect you at all.

What about people with naturally dark skin?  Don’t they have some built-in SPF?

It’s true that the darkest skin has a natural SPF of about 12, but again, constant exposure to UV radiation can cause damage over time.  While lighter skinned people are more susceptible to melanoma, those with darker skin can get melanoma as well.  In fact, the darker the skin, the harder it is to find.  That’s why melanoma is usually deadlier in darker toned skin…it is often difficult to find at an earlier stage.

Melanoma is not just a white person’s disease?

No.  Again, I mention Bob Marley.

Wow.  So, I guess you want to ban the sun as well?

Not at all.  I love being in the sun!  But you really need to protect yourself from the UV radiation.

Why?  The sun is as natural as water.

True, but you’d wear a life jacket in deep water if you didn’t know how to swim.  The same concept applies to the sun and sunscreen.

Source: justaskmarlene.com

But sunscreen is dangerous!  There are chemicals in sunscreen that have been shown to cause birth defects and other problems.

True, there are such chemicals in some sunscreens, but they’re at such a low dose that there is no danger.  The studies that showcase the dangers use so much more sunscreen on a mouse than would ever be applied proportionally to a human.  Even so, there are sunscreens available without those chemicals.

But if more people are using sunscreen yet melanoma is still on the rise, doesn’t that mean that

sunscreen might be causing melanoma?

No.  The problem is that people are using sunscreen incorrectly.  They put it on at the beginning of the day and never reapply it.

They don’t need to if they buy a high SPF.  An SPF 30 lotion will protect me for 30 times longer than without sunscreen.  That means if I burn in 15 minutes, I can put on SPF 30 and be safe for…um…15 times 30 equals…um…450 minutes which is equal to 7 ½ hours!  So I just need to put it on in the morning!

You’re right about the meaning of SPF, but what you forget is that sweat and water causes the lotions to wear off or wash away.  Sunscreen needs to be applied every 2 hours or after you’ve been swimming.  And you need to cover your entire body thoroughly.

But I use water proof lotion!

There’s no such thing as water proof lotion.  The FDA ordered that all such claims be disallowed.  You can use a water resistant lotion, but even that will wash off in water and sweat.

So all I have to do is wear sunscreen and I’ll be protected from UV radiation?

Well, it’s important to understand that sunscreen doesn’t provide all the protection.  Make sure you wear a hat, wear sunglasses, wear tight knit or UPF clothing, and stay in the shade when possible.

Okay, I think I understand all of that.  So how do I know if I have it?

First of all, see a dermatologist.

No thanks…they’ll cut me open just to make a buck!

Source: sutterhealth.com

What?

Dermatologists are in cahoots with “Big Pharma.”  They get kick backs from the sunscreen companies and encourage the dermatologists to cut out the occasional mole in order to scare patients into using the sunscreen.  It’s a big conspiracy.

<sigh>  I don’t have an argument for that except that I know many doctors that are honest people and their chief concern is treating the patient.  Some doctors may cut out moles more aggressively than others, but many lives have been saved when a biopsy comes back with unexpected positive results.  I strongly urge you to see a dermatologist.

Can’t I just check for spots myself?

Yes you can…along with an annual visit to the dermatologist.  Many recommend that you check yourself monthly by following the ABCDE method.  I’ll send you the details of that later.

Okay, I think I get it.  But I have one more question.  Why do you say “Black is the New Pink?”  Do you have something against breast cancer awareness?

No…the title represents the wish from my brother that the melanoma awareness campaign might one day be as successful as the pink breast cancer awareness campaign.

Okay, that’s fine.  But why black?  The black ribbon is supposed to represent when someone is mourning and more recently, as support for “Black Lives Matter.”  I thought the color for skin cancer was orange.

Unfortunately, we have a dual-color campaign.  Traditional skin cancer awareness sometimes uses orange to represent the sun’s role in skin cancer.  Those who have been touched by melanoma typically embrace the black color because the literal definition of melanoma is “black tumor.”

So if I understand you right, melanoma is a deadly, aggressive skin cancer that anyone can get mostly from UV radiation which comes from the sun or tanning beds.  I need to protect myself by staying away from tanning beds, and using sunscreen when outdoors, along with wearing other protection.  I need to see a dermatologist every year to get my skin checked and I should check myself every month or so to see if there’s anything suspicious.

Yes…it’s that simple! 

Aggressive Melanoma Advocacy - It's Getting Attention!

Advocacy is defined as a process by an individual or group which aims to influence decisions within political, economic and social systems or institutions.  In the skin cancer and melanoma awareness world, advocacy occurs through various means.  Groups and individuals lobby for tanning legislation. Those who have been touched by melanoma share their stories in social media.  Other organizations organize fund-raisers and educational forums.  Public Service Announcements from the Melanoma Research Alliance appear on TV or on YouTube.  “Dear 16 Year Old Me” from the David Cornfield Melanoma Fund continues to be the benchmark for all PSAs.  This is advocacy in its purest form. 

And then there is advocacy with a kick.

While general advocacy oozes into the public consciousness, more aggressive advocacy gets right in your face.  Sometimes the ads don’t necessarily scream at you, but they give you a cerebral slap and make you think about the issue just a bit more.  A few months ago, there was presentation on YouTube called “How the Sun Sees You.”

This video showed people to looking at themselves through a UV camera which highlighted previously unseen skin damage.  Many were shocked at what they saw, and then even more shocked when they saw how sunscreen can have such a dramatic positive effect.  To date, that piece has received over 14.7 million views.  It got people’s attention.

Then there is what I’d call extreme advocacy.  A good example is the “Truth” campaign against tobacco use.  Many of their ads depict deathly ill individuals or people who have been severely affected by smoking.  They don’t tell you that smoking is hazardous to your health; they flat out tell you that it can kill you through an ugly and horrid death.  The folks who advocate against underage drinking have also put out some effective ads.  One spot shows a mother talking to and putting earrings on her daughter, who lies dead in her coffin.  These are the types of ads that shock you…and get your attention.

The folks at Mollie’s Fund have recently released their own “extreme” ad.  Called “Free Killer Tan,” it shows free tanning sessions being offered in the city on a cold wintry day.  Promoters are walking the streets, holding signs and encouraging folks to warm up by getting a tan at “Vitamin Sun.”  Some patrons decide to check it out.  They enter the new tanning salon, complete with tanning products in their lobby.  After a quick sign-up, they’re given a towel and goggles and told to proceed down the hall way through a curtain.  What they find on the other side is a funeral parlor with a tanning bed instead of a coffin before pews of mourners.  Atop the coffin is a photo of the potential tanner with the statement “In Loving Memory.  You are gone but not forgotten”. 

So far, it has received about 300,000 views, but there’s a lot of buzz in online magazines and publications.  I suspect this ad will get many more views.  It’s getting people’s attention.

But not all aggressive advocacy needs to be surrounded by promises of death.  While many of us have followed traditional advocacy by placing “Melanoma Awareness” bumper stickers and magnets on our car, there’s one lady in California who has taken car accessorizing to a new level.  Take a look:

Yes, Kristi Donahue has plastered her Toyota with melanoma messages and images from top to bottom.  The car even displays dozens of photos of melanoma angels…those we’ve lost to the dreaded cancer. Her intent is to get the message out and it’s definitely working.  She shared one experience of driving her car to take her son to the lake to feed the ducks and ended up giving an impromptu lesson on melanoma awareness to curious passers-by.  Her message is being heard and her car is definitely getting attention!

I am very proud to be a part of melanoma advocacy.  My blog and Facebook postings fall within more traditional advocacy, but these aggressive campaigns are inspiring.  It shows me that we can go a little farther…dig a little deeper…and be encouraged that we are being heard.  Whether we shock the public or turn their heads with a loudly decorated car, we’re starting to get people’s attention!

"Only Good Things Can Come From That"

This evening (December 10, 2014) I was fortunate enough to attend the 2014 GSK Melanoma Virtual Summit.  This was an online gathering of bloggers and melanoma advocates and organizations to discuss recent developments in the fight against melanoma.   I’ll admit, I wasn’t very good at keeping notes, so what I share here will be a very summarized and abbreviated account of the 90 minute session.

First of all, we all introduced ourselves.  I was thrilled to see the faces of familiar friends and “meet” those I’ve followed for a few years.  I’ll share respective blog and websites at the end of this piece.  There were also representatives from various melanoma advocacy groups (see the list at the end).

First on the agenda was a discussion of a patient’s perception during initial diagnosis.  GSK, as a drug manufacturer, interacts primarily with doctors and medical facilities and not so much actual patients.  They’ve been investigating the patient point of view more and presented some insights.  The most riveting part of this section of the summit was not GSK’s presentation, but the opportunity for melanoma warriors/survivors to tell their tale.  My friends Timna and Rich shared their reactions and experience with initial diagnosis.  It was encouraging to see a representative of the “Big Pharma” corporate healthcare world (GSK) listen to real human stories and emotions.

The next segment dealt with updates on recent policies related to melanoma.  July’s “Call to Action” by the Surgeon General emphasized.  This is not a federally funded venture, but a true call to action in local communities.  Organize the building of shaded areas in parks.  Increase awareness of UV dangers.  Promote sun-safe policies in schools and in the community.  Participate in fund-raising and awareness-raising activities.  Support legislation to ban the use of tanning beds for minors.  While it may have been the same message from July, it was an effort to recharge our efforts.

Others also presented updates on the recently signed Sunscreen Innovation Act.  Now, new formulations of sunscreen will be expedited for FDA approval.  This will introduce a slew of sunscreen formulas to the United States that already exist in other countries.  I asked if the increased options in sunscreen might help reduce the price of sunscreen…perhaps through increased competition.  Unfortunately, this could not be predicted or known at this time.

Additionally, there was discussion about the FDA Guidelines on sun lamps (warning stickers and reclassification of tanning beds), funding for various research, and details about research on genetic testing, specifically on those melanoma patients not fortunate enough to have the B-RAF gene (as there is no effective treatment for this 50% of the melanoma patient population).  This last effort is lead by the SU2C/MRA Melanoma Dream Team.  In addition, there was a report on the Brain Mets tissue bank to help research brain metastasis.  Over half of all melanoma deaths occur from brain metastasis.  Count my brother Jeff as one of those.

The summit closed with a brief impromptu discussion about pediatric melanoma and the apparent increase in such cases.  It was noted by one participant that 10 years ago, melanoma research concentrated on men in the 50’s.  Now, the research is heading to younger ages…20’s and now even to pediatric patients.  It’s a disturbing trend.

With the upcoming merger/acquisition/whatever of GSK with Novartis, there’s some concern that this summit will continue going forward.  The GSK group seemed confident that it will continue.  I certainly hope so.  Does this group of bloggers and advocates create new and innovative “legislation” against melanoma?  No.  But as my friend Rich commented, “The value of these things is to establish and build personal connections and relationships in the melanoma advocacy community.  Only good things can come from that.”

Thank you to the following organizations for your participation:

AIM at Melanoma – aimatmelanoma.org

Melanoma International Foundation – melanomainternational.org

Melanoma Research Alliance – curemelanoma.org

Melanoma Research Foundation – melamoma.org

Skin Cancer Foundation – skincancer.org

Skin of Steel – skinofsteel.org

The following is a list of attending bloggers as supplied by the GSK organizers.  My apologies for any that attended but were not on the provided list or that I simply forgot to type (it’s late at night…lol):

TJ Sharpe - http://www.philly.com/philly/blogs/patient1

Timna Understein - http://respecttherays.blogspot.com.es/

Steve and Jennifer “Who Dat” Martin - http://martinfamilyjourney.blogspot.com/

Martha Bishop - http://melanomas.bishless.com/

Alisa Linton - http://joshalisa.blogspot.com/

Julie Marzano - http://juliesmelanomajournal.blogspot.com/

Chelsea Price Dawson (and her little dog, too) - http://adventurewithmelanoma.blogspot.com/

Rich McDonald - http://hotelmelanoma.blogspot.com/