Tuesday, April 3, 2012

Why Melanoma MUST Be Taken Seriously By EVERYONE!

My brain pays attention. Often a little too late to do me any good, hence, I'm dealing with melanoma. But please follow me here, because maybe this will help educate us about some stuff we all, no matter what our skin color, age, race, religion, politics, or gender, need to know.

Efforts are increasing to spread "melanoma awareness" and I can almost hear a lot of yawns. And frankly, I'm beginning to get that. I don't like it, but it is what it is. I think people are being made "aware," but we're stopping short at "educating" the masses. Big difference. We keep throwing stats showing alarming rates of increase at people, and if a person doesn't happen to be a young female who goes to the tanning bed and is pale, and let's face it, that isn't the sum total of the world's population, folks can and do, tune out. Same old, same old. And we in Melaland can and do get frustrated.

We keep warning about UV rays and there are people who want to remind us that there have always been UV rays. People never used to worry about melanoma so why worry now? People have always worked outside, with no sunblock, lived well into their 90s ...so what's the big deal now?

OK, without getting into the heated debate of "Global Warming" there are some facts about the changes of our Earth's atmosphere, over time, that we all need to educate ourselves on. This applies to the country we live in, whichever country on God's earth that might be. This applies to everyone with skin and I think that will include all of us.

I'm just lifting up one article that explains the changes the earth's atmosphere has been undergoing since the Industrial Revolution began. There are many more but this is easily understood and concise. The changes have been gradual. Our great-grandparents weren't affected by the changes because they weren't as sweeping as they are now. Scientists didn't begin sitting up and paying attention until the 1970s and it wasn't until the 1980s that "alarm bells started to ring." Please pay close attention to "2) Damage to the ozone layer."  Pay attention to the last sentence in that section, "The emission of CFC's into the environment is now greatly reduced, unfortunately the damage has already been done and the CFC molecules, thanks to their stability, are still causing ozone depletion." For that reason alone, melanoma will continue to rise around the world, some countries more than others. It will not care what your skin tone is or if you've ever stepped foot in a tanning bed.

Then there is tanning bed usage. According to wikipedia, tanning beds were brought to America in 1979. This is copied/pasted from the section Current Trends:

"A growing trend is the home tanning bed. Many people are now opting to own their own tanning system instead of going to the salon. The primary reasons are for convenience and privacy. As more states seek to ban young adults from commercial salons, home tanning with the control of a system that allows UV by skin type and a timer may encourage additional sales (stress mine). The average home system has 16 to 24 lamps, and costs $2000 to $3000, making its price competitive (over a number of years) for tanners who frequent salons regularly. This has led to an explosion of retailers that feature smaller, home style tanning beds both on the internet and in traditional retail stores.
Another trend is spray on tanning (a form of sunless tanning), using either special booths or a hand held setup similar to an airbrush. Many people who try spray on tanning often still go to the tanning salon, and use the spray on as a way to jump start the appearance of a tan, while others use it as a way to look tan while avoiding UV exposure of any kind. This is also demonstrated by the large number of indoor tanning lotions that have "bronzers" included, which is similar to the chemicals used for spray on tans, DHA.
The Indoor Tanning Association now estimates a 30 million customer base in the U.S.—about 10% of the total US population. 2.3 million of these customers are teens. 18.1% of women tan indoors while 6.3% of men tan indoors. 13% of indoor tanners are teens, 20.4% are young adults (age 18-29), 13% are adults (age 30-64) and 9.8% are older adults (age 65+)."

The numbers are alarming! What this article does not make clear is that the people who use these devices are people of all skin tones, not just Caucasian. These figures are only based on US usage and are not world-wide numbers. For this reason, alone, melanoma will continue to rise. Couple this with the changes in our atmosphere and it's not hard to understand why melanoma is starting to be referred to as being an epidemic by some doctors.

This has been swirling in my brain for several days now, ever since someone did a search for "melanoma not taken seriously" and was led, by Google, to this blog.

I've been paying attention to the info we put out there and where we put it. People who don't tan don't take the threat seriously. People who rely on the atmosphere of their great-grandparents don't take the threat seriously. And until we make it clear just how awful melanoma is and how it works, why should they?

Some awareness materials call it skin cancer. There are people who refer to melanoma as just skin cancer and think it's a small price to pay for a tan. We who try to spread awareness and educate must stop calling melanoma skin cancer. Calling it that sets people up for failure because they think skin cancer is something they can cut out, have a few stitches, and life will go on no big deal.

And I should know. Most, maybe all, of us who have been diagnosed didn't understand what melanoma really is. I'll speak for myself here, but I'm well aware that many can and do say the same thing. I knew my mole had melanoma in it. Over the course of two weeks, it began at the tip of my mole as a "bubble" and within two weeks the entire thing was evenly raised, black, and what was once two moles that overlapped, was now one big even circle of a mean looking "have mercy."

The day it started to bleed I was positive melanoma was in it. When I had it removed that afternoon at Duke Urgent Care, I was relieved to "know" the problem was gone, my long incision would heal, stitches would be removed in time, and my life was fine yet again. Problem solved. While I was smart enough to know melanoma was in it, I was naive enough not to know what melanoma really is.

When I heard the voicemail the following week from the doctor at Duke Urgent Care, I was not surprised when he said I had melanoma. Yeah, yeah. It was cut out, so what? It was his next sentence that reduced me to tears, "I've made you an appointment with a Duke oncologist to see what we're dealing with." I knew what oncologists were for. I didn't like the idea of having something to deal with because, in my mind, I had already dealt with it!

I didn't know melanoma can get into lymph nodes. I didn't know that all the time I had that blasted mole sitting on my arm that cells were multiplying and making their way through my system. I didn't know that the day was fast approaching that I would undergo awful procedures to track down where it had spread, be injected with nuclear material and light up a machine, and have two back-to-back surgeries removing all 27 lymph nodes under my left arm. I didn't know I'd develop lymphedema and have to wear a compression sleeve and glove the rest of my life. And I didn't know I'd be given a set of statistics with the words, "You may get more primaries on your skin, but if yours comes back it will be in your brain or lungs."

I didn't know. I didn't know what stage 3b meant until I had to learn. I didn't know that I will now live appointment to appointment, never knowing if I have a renegade cell waiting to cut loose and go to work in my organs. And that's a major place I see many, not all, melanoma awareness efforts falling short. We aren't telling people the ins and outs of this disease. We're doing great at telling people it's cancer and it's deadly. But we aren't telling them the MO of melanoma.

So, here it is in a nutshell: I don't give a fig what color you are or how old or young you are (because melanoma doesn't care), keep a thorough, head-to-toe check on your skin. NOT just moles. If you start to notice a change of any kind, new growth, a new lump or bump anywhere, get it checked out immediately. Thorough means thorough. Keep a check on your eyes, mouth, and even genital areas that cannot be seen. Keep a check on all nail beds, the palms of your hands and the soles of your feet.

If you go to a doctor, of any kind and they tell you it's nothing but your gut tells you differently, insist on complete removal and pathology (if they remove it, it has to be pathed). If for some reason your doctor isn't cooperative, get another doctor. That simple. You must be your own best advocate and your children's best advocate because it can strike them too. Refuse to let an uncooperative doctor let you die. Refuse to let a place on your body bring you down. Don't let what could be a stage 1 melanoma become advanced.

Understand that happens far more than it ever should. Melanoma is not going to just sit ever-so nicely in a mole, freckle, lump, or bump while it is watched. If melanoma is present it is growing and spreading. Some melanomas spread outwards and some spread inwards. This isn't some kind of reality show...don't watch it. Remove it. Path it. Deal with it. Deal with it now or it will deal with you later. Melanoma does not play nice. It doesn't play around, period. Once it hits your lymph nodes or bloodstream (and that does happen), you've got real trouble. It is cancer and it is vicious. It is deadly. It is called the beast and for good reason. Our color is black for a reason. While black is a great fashion color, don't let it become your cancer color if you can help it. There's a good chance that will happen though.

One thing that I do not see mentioned in awareness and educational material is the fact that melanoma is not only the fastest growing cancer in some demographics, but it is on target for being the deadliest of all cancers in all demographics by 2022, just ten years from now. It will overtake breast and lung cancer. We also aren't doing enough to educate the population about the connection between breast cancer and melanoma.

We've got a ways to go. We're learning, research is progressing, we're getting the word out there and hopefully people are becoming more aware. I'm concerned that too many won't get it until they get it because we're stopping short in our campaigns. People are getting the message that melanoma is on the increase. They're being told it's deadly. But we're not getting the full scope of the problem out there and we're not telling them how melanoma operates.

It's not just about the tan. It's also about our atmosphere. It's not just skin cancer. It's melanoma. You can't just cut it out and be done with it. That attitude and lack of knowledge is deadly.

Information is prevalent. Those of us with it are increasing and are increasingly willing to share our stories. But people without it must take those of us with it seriously. We all must take this very real threat seriously. There are excellent sources of information readily available, but it's up to each person to avail themselves of the info. Check out:

Aim at Melanoma

Melanoma Research Foundation

National Cancer Institute

Skin Cancer Foundation

I'm one of the ones who didn't get it until I got it. I wish I had taken it more seriously. I knew I had a ridiculously troublesome looking mole, and a family history, and a few sunburns under my belt. I knew when I had that thing removed it had melanoma in it.

I didn't know what that meant. If I've helped educate anyone on what that means...

I am grateful.