The first Monday in May is Melanoma Monday. It is a designated day to create melanoma awareness and to honor those fighting this evil disease and remember those angels whose fight is over. It is a day to wear black, the color for melanoma awareness (and don't let anyone tell you it is a different color, like orange, because they are wrong!). But melanoma awareness doesn't need to just be -- and shouldn't be -- confined to just one day.
As you probably know, my daughter Jaime was diagnosed with melanoma when she was 20 years old. We had never heard of it before the doctor said those three words that started our nightmare ... "Jaime has melanoma." It took her life ... and along with it, most of mine ... 9 years later. Since her death, I have been obsessed with trying to keep other families from the pain that ours has been through. So please bear with me ... I'm going to throw a lot of facts at you, but these facts could save your life or that of someone special to you.
Your best chance of beating melanoma is not getting it in the first place
As horrific as melanoma is, it can, in many cases, be prevented.
- Be sun smart.
- Avoid excessive sun exposure, especially between the hours of 10am - 2pm. Remember that water, snow, and sand reflect damaging UV rays to increase your chances of sunburn.
- Apply sunscreen with a broad-spectrum (with both UVA and UVB protection) sun-protective factor (SPF) of 15 or higher. Apply 1 oz (a shotglass full) 30 minutes before going out. Reapply every 2 hours, even if it's cloudy (UV rays travel through clouds), or after swimming or sweating.
- Keep newborns out of the sun. When they are older than 6 months, you can use sunscreen on them.
- Seek shade when your shadow is shorter than you are.
- Slip! Slop! Slap! Wrap!: Slip on clothing, slop on sunscreen, slap on a wide-brimmed hat, and wrap on sunglasses.
- Examine your skin often and take note of any changing or new moles.
- NEVER, never, never use indoor tanning beds or sunlamps. According to the World Health Organization, ultraviolet radiation is a proven human carcinogen. First exposure to tanning beds before age 35 increases melanoma risk by 75%. Of the 28 million people using tanning beds in US each year, 2.3 million are teens.
Early detection could save your life
And if not prevented, it can be caught early, which means it is easier to treat and hopefully stop in its tracks. Know the ABCDEs of melanoma. Unlike all other cancers, melanoma is visible on the skin, making it easier to detect in the early stages. Warning signs of melanoma include changes in size, shape, or color of a mole or appearance of a new growth on the skin. Any mole that itches or bleeds warrants a trip to your physician ASAP. However also be aware that these are only guidelines and melanoma can appear entirely different from the ABCDEs, particularly pediatric melanoma. See your doctor with any skin lesion that concerns you. Monthly skin self-exams and annual skin checks by your doctor are important as well.
Melanoma facts you should know
- Melanoma is the most deadly type of cancer of the skin; it's not "JUST" skin cancer.
- Melanoma is the 5th most common type of new cancer diagnosis in men and the 7th most common in women.
- Every hour someone in the US dies from melanoma. Jaime’s hour was 1pm, Friday, March 16, 2007.
- Although the incidence of most cancers is declining, melanoma diagnoses continue to rise significantly, at a rate faster than that of any of the 7 most common cancers.
- The incidence rate for invasive melanoma is highest in Caucasians, who are almost 30 times more likely to develop melanoma than African Americans. However, melanoma can affect anyone, no matter their age, sex, race, religion, or political beliefs. It is an equal opportunity cancer! Although melanoma is uncommon in people of color, when it is diagnosed it is frequently fatal for these populations because the melanoma is more advanced at time of diagnosis.
- Melanoma is most common in men older than 50, more common than colon, prostate, and lung cancer. Men aged 65 and older are more than twice as likely to develop melanoma as women in the same age group.
- Women younger than 39 have a higher probability of developing melanoma than any other cancer except breast cancer and are twice as likely to develop melanoma as men.
- Melanoma is now the most common cancer in the 25-29 age group and second most common for 15-29 year olds.
- Melanoma accounts for about 3% of all pediatric cancers; 90% of pediatric melanoma cases occur in girls 10-19.
- 76,100 new cases of invasive melanoma and 63,770 new cases of non-invasive (in situ) melanoma will be diagnosed in the United States in 2014; about 200,000 new cases are diagnosed worldwide each year. According to the World Health Organization Report, about 46,000 melanoma-related deaths occur worldwide each year; 9,710 US deaths are expected from melanoma in 2014.
- 1 in 52 men and women will be diagnosed with melanoma of the skin during their lifetime; 1 in 5 will develop skin cancer.
- Melanoma can develop on any skin surface, even where “the sun don't shine” and in the eyes, nails, and soles of the feet.
- Excessive exposure to UV radiation from the sun or tanning beds increases your risk for melanoma as well as basal cell carcinoma and squamous cell carcinoma. About 86% of melanomas can be attributed to exposure to ultraviolet (UV) radiation from the sun.
- The survival rate for patients whose melanoma is detected early is about 99%; the survival falls to 15% for those with advanced disease.
- According to the National Cancer Institute, the estimated total direct cost associated with the treatment of melanoma in 2010 was $2.36 billion in the United States
Risk factors you need to think about
- Just one severe, blistering sunburn can double a person's chance of developing melanoma later in life.
- Workplace exposure to coal tar, pitch, creosote, arsenic compounds, or radium increases your risk.
- Exposure to tanning beds before age 35 increases a person's risk of developing melanoma by 75%.
- People with fair skin that freckles easily, blond or red hair, and blue or green eyes are at greater risk for all three types of skin cancer.
- Anyone who has more than 50 moles or large or unusual moles is at greater risk for melanoma.
- Anyone who has a blood relative who has had a history of melanoma is at increased risk.
- Previous melanoma or the more common types of skin cancers as well as cancers like breast or thyroid can increase your risk.
Don't be blind-sided by melanoma like our family was. Become educated and prevent it from entering your lives!
For more comprehensive information on melanoma, see www.AIMatMelanoma.org
Melanoma Mama (Jaime's mom, Donna)
@melanoma_mama (Twitter)
http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)
It's May!! A beautiful month, marking the end of Spring and giving us hints of Summer. It starts with May Day, rounds out with Memorial Day, and has Mother's Day planted in between. (For a lot of reasons, Mother's Day is not one of my favorite holidays ... but that's another blog all on its own.) May is filled with end of school years and graduations, saying good-byes and looking ahead to new beginnings. It is the month where the cool temps of Spring start to warm, reminding us that the heat of Summer is not far behind. It is bursting with vivid blankets of brightly colored flowers, and ... Achoo! did I mention pollen? May has something for everyone.
So why do I want to see the merry month of May painted black? Because May is Melanoma Awareness Month, and black is the awareness color associated with this evil disease. Melanoma is an often fatal form of skin cancer that seems to have a mind of its own. Melanoma is not full of hope like the month of May, although with new treatment options, hope is shining brighter. It is a disease that is dark, deadly, and foreboding, and unlike other cancers, the cases of melanoma are increasing. And it can, in many cases, be prevented. Melanoma needs to be stopped. Too many hearts have already been broken; too many lives have been shattered.
Although May is shared by many other diseases/disorders as an awareness month, it is melanoma that will get my support this May, as it does every month. You may or may not know that my daughter Jaime lost her life to melanoma when she was 29, so I have a very personal reason for giving this disease all my energy, time, and anger and for wearing the black ribbon to honor, remember, and respect my baby girl during May. She was diagnosed when she was 20 years old, back in 1998. Melanoma has progressed since that time from a disease I, and most people, had never heard of to one that is often in the news. I would love to see black as prominent during May as pink is during October for breast cancer awareness.
Jaime and I used to wait eagerly for her melanoma specialist to return from cancer conventions to learn of any new treatments ... but he was always empty handed. I know that he hated facing us with the same results from the previous years. The look on his face told us without him speaking that there was nothing new or nothing even close to being new. Now melanoma treatments are the highlights of those conventions, but it took a very long time ... too long for Jaime.
At one melanoma walk shortly after Jaime's death, I was asked if I was a survivor (they had special t-shirts for survivors). Without much thought, I said yes. I had fought that damn disease with every breath I had along side my brave daughter ... and yes, I did feel like I had survived even though Jaime did not. It certainly did not seem fair at all, but I had survived whether I wanted to or not. In the process though, I had lost my heart and my life as I had known it. My sons had lost the mother they once had. I was no longer me, thanks to melanoma. And I know that way too many of you reading this understand what I am saying. We MUST work harder to educate and advocate so that others will be spared the pain and anguish that we live with daily.
Your best chance of beating melanoma is not getting it in the first place! So you will be hearing lots more from me this month about melanoma, particularly on Melanoma Monday (May 5 in 2014). I will be sharing facts about melanoma, risk factors, prevention, and detection and information on the other more common forms of skin cancer. Why? Because you need to be armed with information to protect your family and yourselves. Melanoma is unforgiving ... it has no cure. Once melanoma has touched you, it is for life. The fear of a recurrence and the pain of surgeries and treatments involved ... or the fear of it ending your life ... never goes away. Melanoma never goes away!
Melanoma May ... to create awareness, to educate, to honor & remember
So as we focus our attention on the beautiful month of May and all it has to offer us, please support melanoma awareness and/or donate to melanoma research. Matter of fact, don't just support it in May ... it needs your support, your attention, your donations all year round.
For comprehensive information on melanoma, visit www.AIMatMelanoma.org
Social media is an amazing tool, and I am in awe of its power. It can unite thousands who thought they were fighting a disease alone; it can bring about positive social change. I am delighted to report that social media has had an impact on those in the melanoma community ... and on anyone who has skin!
I was fortunate to be part of a group representing the melanoma community that participated in a teleconference with the American Academy of Dermatology (AAD) regarding their upcoming May Melanoma/Skin Cancer Awareness Month campaign. The AAD is an organization of over 17,000 US and international dermatologists, dealing with any and all skin conditions/diseases. Its support is valued by the melanoma community (melanoma is the type of skin cancer that can be deadly), although the melanoma community has proven that we can, if we must, stand alone. But we would rather stand together!
The Orange Crush Campaign
Many may remember that the AAD's May 2013 campaign caused quite a ruckus. I understand that their intent was to draw attention to skin cancer, but in the process, they managed to offend most of the
melanoma community by attempting to change our awareness color from
black to orange. And yes, the ribbon color is a BIG deal to those fighting a disease or disorder. It identifies and creates awareness (just look at the pink ribbon, if you don't believe me).
The dermatologists were encouraged not only to wear orange but to throw parties with orange
cupcakes and orange confetti on Melanoma Monday ... because melanoma is
so much fun??? It was painful and disrespectful to those fighting and
to the families who have lost loved ones to this ugly disease. We were appalled that the same dermatologists who treated our disease,
who watched our warriors suffer and die, were celebrating Melanoma
Monday rather than honoring melanoma patients and remembering those who could not be saved.
But it goes further than that. One major problem with educating the public about melanoma is the idea that it is "just" skin cancer. Cut it out and go on with your life ... which is far from true. So it is certainly not helpful to have melanoma thrown in as just another skin cancer. It needs to be respected and feared ... and that is just not compatible with Popsicle orange.
Are You Listening???
Through social media, the melanoma community fought back while at the same time trying to educate the public about melanoma. We explained that black is our awareness color because melanoma actually means "black tumor." Yes, it is depressing and sad but so is melanoma ... and dark and evil. There is nothing cheerful, happy, or vibrant about melanoma. One person dies in the US every hour from this vile disease.
Plus,
to add to the pain, orange is the color of the sun ... a reminder to
many melanoma warriors fighting for their lives of how they got started
on their cancer journey. Each new "orange" event introduced during
the month of May was like a dagger in the heart of the melanoma
community.
We were hurt; we were offended; we struck out through our tweets and Facebook posts. Yes, we were obnoxious and loud. I
confess to making a few ... okay, a lot ... of smart-ass remarks myself on
Twitter and Facebook during May to defend the melanoma community and our
BLACK ribbon.
David vs Goliath
Although we were small in numbers, we were heard, which brought about our teleconference with the AAD. We used social media and brought about change ... and it will be beneficial change for the melanoma community, as well as for those who want to avoid joining this type of cancer group (which should be everybody).
This year the AAD will be supporting the melanoma community during May because we are now working together. Dermatologists will be asked to wear BLACK on Melanoma Monday, and melanoma will be the focus of the AAD's campaign not just for one day but for the whole first week of May. Their campaign will promote early detection of skin cancer ... instead of the color orange.
There probably will be bumps along the way, but I think we are headed in a positive direction. And thanks to the power of social media, and to the AAD for being receptive, our voices were heard and lives will be saved. Over 7,200 supporters joined a group on Facebook to wear black for Melanoma Month last year, so we are not as weak in numbers as we thought. But joining with the AAD and their dermatologists will make us even stronger and able to save even more lives through early detection, information, prevention, and research. And it feels really good!
As a follow-up to this blog and to see how it all turned out in May 2014, see http://melanoma-mama.blogspot.com/2014/05/it-sounded-so-good-when-i-wrote-it.html
Melanoma Mama (Jaime's mom, Donna)
http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)
