Friday, August 17, 2007

24 and facing a foe called Melanoma





It has been difficult to sit down and write this week, especially since my last post about 27-year-old Scarlet and her battle with melanoma. While heartbroken, I have been comforted and uplifted by an email from a young woman named MaryAnn (who is also in her 20s and lives here in Utah).

As I work on revising, updating, and publishing my skin cancer prevention education curriculum for young adults, and gathering stories from people - all over the world - touched by melanoma skin cancer, I am overwhelmed. I am overwhelmed when I think about the number of people, especially those in their teens and 20s, who have faced melanoma. When these people are on the brink of starting their lives, melanoma has robbed them of it. When in your 20s, you should be taking classes and writing essays for college, dating and initiating lifelong friendships, traveling the world, discovering who you are, and preparing for the future. You should be living with passion, enthusiasm, vigor, and be full of hope and vitality. You should be full of enthusiasm and adventure, seeking out truth and knowledge, growing and developing, learning and loving. You should not be facing melanoma skin cancer.

At age 24, I was working on my senior thesis for college (which became the launchpad for my first book) and thinking about my career options. I established, with my dear friend Natalie, a non-profit organization to teach young adults about cancer (especially skin cancer). I was dreaming about my future husband and vacations to Ireland, Australia, Egypt, Greece, and other exotic places. (I still am... Where is Mr. Right, anyway?) MaryAnn, on the other hand; At age 24, MaryAnn was told that a mole on her cheek was malignant melanoma--a preventable, but very aggressive and even deadly form of cancer.

Here's an excerpt from the email she sent me --

"I was 24 years old at the time of diagnosis. I learned of my diagnosis after I had a mole that was on my left cheek removed [...]. The [plastic surgeon] automatically sent the mole in for a biopsy and I received a call that following Monday. My melanoma was at a Clark level IV. I honestly went into a complete numb mode. I was referred to an oncologist that I was told was the best in the West. I did anything and everything he told me to do. I was so scared I didn't dare think anymore than what I was told. It has now been two years since my diagnosis. I return every six months for a check up, and I have had many atypical moles removed since.

When I received the initial call, I told him he had the wrong person, after all I was only 24. This wasn't possible. Then, I called my husband and my mom and cried and cried. I didn't know what to think and neither did they. We all went to see the oncologist together. I was only focusing on the part where he said he was going to cut into my face and I would have a scar. I kept asking how big the scar was going to be and how bad it would look. He finally looked me in the eyes and said, "I'm not really worried about how the scar will look, I am more worried about trying to save your life." I honestly can say I didn't hear much of the conversation after that. I was told that I had skin cancer because I went tanning. I truly thought, "this is crazy." We are told that tanning beds are safe, so how could this be true? I decided that the only way I could become a survivor and not a victim of this terrible disease was to start educating as many people as I could about the dangers of tanning beds. I have now done several interviews, as well as going to the high schools and telling them my story. I will do everything in my power to help our kids learn the truth about tanning beds and what they need to do to keep themselves safe from skin cancer and melanoma. The picture is right before I was heading into the second surgery to remove all the lymph nodes in my neck due [to prevent the melanoma from spreading further."


Thankfully, MaryAnn's dermatologist, plastic surgeon, and oncologist were able to surgically remove the metastic (spreading) melanoma and thus save her life. Yet, many other young women such as Scarlet and others mentioned in this Blog were not as fortunate. Let this be, yet ANOTHER reminder, that there is NO SUCH THING AS A SAFE TAN. Tanning beds are dangerous - period. Ultraviolet radiation from tanning beds are just as harmful (in fact, more so) than UV rays from the sun. There is a great deal of research currently being done about the affects of tanning and its link to a heightened risk for melanoma. And there are various studies on how the cumulative affects of ultraviolet radiation - a known carcinogen - leads to an eventual melanoma.

To learn more about melanoma prevention, detection and treatment, as well as the dangers of tanning pick up copy of ONLY SKIN DEEP? An Essential Guide to Effective Skin Cancer Programs and Research. You can also log on to www.aad.org - the official site of the American Academy of Dermatology and read scientific journals.

Melanoma is an ugly, terrible, aggressive, and deadly cancer that is largely preventable. Truly, with increased awareness, prevention, and education we can stem the tide of this growing yet unnecessary epidemic. In turn, we SAVE LIVES of many of our youth who are, in fact, our future!

Parents, please do not let your teenagers go tanning. Ladies, if you must heed to the fashion of being bronze use sunless tanning foams instead. Everyone - perform your self-skin exams every month and see your dermatologist annually; protect yourself and your loved ones from melanoma.

I wish all cancers were as easily preventable; however, the double-edged sword we face with melanoma is that while it may be preventable, it is a complicated and often misunderstood, dangerous and deadly disease.

So, again, I implore you - forgo the tanning beds, wear the sunscreen, and take all the necessary steps to reduce your risk and protect yourself from skin cancer.

Thanks, MaryAnn, for sharing your story. Thank you to all of you who are fighting for skin cancer prevention, melanoma research, sun safety, and tanning legislation. You are heroes fighting a good fight!

Wishing you all lifelong health and safety,
Danielle.

PS: If you are a melanoma survivor, or have lost a loved one to melanoma, please email me at info@cancercrusaders.org to share your story.

5 comments:

Lisa said...

Congratulations on an amazing blog. I had to write to thank you for all the terrific work you're doing to help educate people about melanoma detection and prevention.

This disease has touched my life yearly since I was sixteen -- not me personally, but the threat. I'd like to share my experience, since you've been so generous by blogging your articles on BlogHer, where I first read you. Skin cancer has been a constant threat in my life - to my family and to my friends.

- I lost a dear friend and colleague, age 37, to melanoma. She had a simple mole on her leg. Her suffering before she died was shocking. She grew up in California, but her tanning wasn't vanity -- she was an accomplished marathoner before cancer stole her from us.

- Another dear friend and colleague has had her nose rebuilt after the birthmark on her nose led to Stage II melanoma. She lives under the constant threat of a recurrence. She is the family's primary breadwinner and mother to two teenagers.

- My father has had melanoma and is currently in remission. His inner ear and part of his outer ear were rebuilt by expert plastic surgeons. And he has had 30 perhaps 40 different procedures done on his body for basal cells (superficial skin cancers, a very different beast from melanoma). I don't know what my dad looks like without a hat, and I'm glad.

- My mother also has a recurring history for basal cell cancer. Her nose alone has been operated on five times.

- Because of this family history, when my son was seven, he had outpatient surgery to have all his birthmarks removed as a preventive measure.

I hope that this comment will inspire other readers to comment too. Thank you so, so much for your writing.

Lisa said...

P.S. MaryAnn: You are gorgeous. It's great to see this picture of you! Congratulations to you and your family for a successful procedure. You'll be in my prayers for a speedy recovery.

Anonymous said...

I was impressed by your comment on Blogher and how you stated your case for melanoma support.

I wanted to share that comment with your own blog readers.

Thanks for your comment and the great things you're doing.

Marta

"There are so many worthy causes in need of our attention and ACTION.

As a cancer educator, I must say that I am deeply concerned that melanoma - which is a largely PREVENTABLE but often misunderstood, complicated, and very DEADLY disease - is killing more women ages 20 -39 than any other cancer.

Often times, when think a disease is preventable we dismiss it and therefore focus our attention and energies on other health-related issues. All forms of cancer require and deserve our support and attention (believe me, I was orphaned as a teenager when breast cancer killed my mother). Fortunately, many cancers - especially breast cancer - are receiving widespread media coverage. Alas, melanoma is consistently ignored.

Is it that the general public feels that skin cancer is an unimportant issue? Do people not realize that melanoma skin cancer, in particular, is extremely aggressive and does, in fact, kill someone every hour? Is it that sporting pink ribbons is far more fashionable, and breasts are easier for us to relate to emotionally (since we, as women, have them and it's part of our femininity) than discussing "ugly" moles and stripping for the dermatologist?

It seems to me that we are in a unique and incredible position; We are in a position where we can make a profoundly positive impact on the cancer community, and on health care in general; to significantly improve the overall quality of life by reducing the number of cancer-related (melanoma) deaths; to steam the tide of an exploding and yet unnecessary epidemic; to set a precedence and a standard; to SAVE LIVES. With proper education, resources, research, funding, activism, campaigning, and effort, we can save people - especially young women - from having to face a foe known as the "Black Tumor". What an incredible opportunity, not to mention a profound responsibility, we have to protect people from a [largely] preventable disease.

We support, rally behind, and fight for other diseases. Melanoma should be among our list of preventable but deadly diseases in which we must crusade against and protect people from....

Thank you,

Danielle M. White"

Anonymous said...

I wish I had read this 6 years ago. I'm 24 years old and may have skin cancer. Waiting for the results. Worst 2 days of my life knowing that if indeed I do have it, it's my own fault. I have gone to tanning beds since I was 16 years old. I'm extremely fair skinned but vain enough to care if I am tan or "pale" and stupid enough to think I would be lucky and not get skin cancer. Tanning beds have to be outlawed. Knowing that there are women my age dying from this is an outrage. I remember going to the tanning bed after the FDA released it's warning in August about tanning beds and the workers handed me a flyer with reasons to CONTINUE tanning and proof that the tanning bed was not a danger at all. Deep down, I've known every time I got in that tanning bed that this week would come and I would be told I may have melanoma. God bless Scarlet and her family. Her story needs to be told.

Jess :) said...

Ok, I can't tell you how much I balled from reading your blog...and knowing that at 24 years old, I am not the only diagnosed and currently fighting melanoma. I would like to share my story - in a lot of ways, I can relate.

I was a constant tanning bed user - all the way from about 16 to 24 w/ the diagnosis. I was the girl in high school that would go to the beach almost daily and use BABY OIL. Although, I have been told by my dermatologist that just b/c you tan - doesn't mean that IS why I have gotten it due to other factors. I have a family history - and my grandfather actually died from melanoma that spread to his lungs. He was diagnosed in his 30's.

I keep on hearing that "it is so uncommon for someone at age 24 to get it." For whatever reason, I have a immune system that does not recognize the melanoma cells - and it has been genetically passed to me from a lot of genetic testing I have undergone. From what we can all gather, nothing is 100% on why or how someone gets it.

To this date, I have had 4 melanoma spots removed in less than 6 months. I have a oncologist and a melanoma specialist that I see regularly. For whatever reason, I just continue making them.

It is difficult living w/ this, but not because it's "cancer" but b/c of the scarring, and who is at 24 - very self-conscious of my body. I am single as well and each melanoma removing, I have 30+ stitches. I worry about having kids and passing this gene on to them. Luckily, I have been blessed w/ a great job and was able to go to nursing school before everything was known.

I would by no means say that my life is over...but, just different. I have grown tremendously on my walk with the Lord since and help to be a advocate to people to GET CHECKED! I have always said fromday 1 whatever the results are/will be - I would gloify the Lord and still trust that He knows what he is doing.

I think the biggest fear that I have is that I will develop a melanoma in places that you can't see....ie, the eyeball, the vagina, rectum, etc. and then metasize in my body w/ the very aggressive form that I have.

But, more so, I hope that my story can encourage you and readers out there to show you are not alone. If you have been blessed w/out melanoma - continue to get checked and WEAR SUNSCREEN. :) thank you for your blog - and a passion to help others.