Not "Just" Skin Cancer

I recently read a post where some members of our community felt the sting of having others minimize their skin cancer experience because they did not go through chemotherapy. Some related that coworkers, friends, or family have made comments that they should be happy with “only” having skin cancer. This makes my blood burn a tad because we are skin cancer survivors. Second class cancer survivors? I recall the early days of my journey being at a local bike-a-thon for cancer research and having the emcee over the loudspeaker call out for cancer survivors to come to the podium to share their stories. He added the proviso that he didn’t need skin cancer “patients” to join him. The implication seemed to be that skin cancer was not in the class as other forms of cancer and maybe not as noteworthy or as important. I was miffed, but not surprised. He probably was just not very well informed and felt the pressure of having what he considered more provocative testimonials. We know that he was wrong. Skin cancer survivors are courageous and have great stories to share. More importantly, they can share advice that saves lives and this is the point of the story. It’s about the message For me, it’s not about being deemed worthy of praise, admiration, or affirmation (although who doesn’t like that?) because I had Melanoma. Being considered a legitimate cancer survivor is important because it gives weight to my message about skin protection. The more people respect my story, the more they will listen to my message about the dangers of UV rays. The more people understand about skin cancer, hopefully, the more they will change their behaviors. In the end, it’s not about someone showing me empathy for my pain, but listening to my tale that can help them from feeling their own. Dealing with the naysayers Here is how I deal with the naysayers: I show them my scars (enough said). I explain the latest research (This means that I have done my homework). I show sensitivity to whatever issues that they may be facing (The old adage applies here, “They don’t care about how much you know until they know that you care.”) I realize that they (or someone they know) may have had other forms of cancer that they deem more serious and has affected their thinking. I realize that their experience has taught them to think less of skin cancer. This may be possible because it was easily and effectively treated without apparent further consequences. Sometimes it’s best to just walk away because the wrong message may come across in anger and when emotions run hot. Pick your battles and find another time to share your message, if possible. Skin cancer is not a joke Skin cancer is legit. It harms people. Some die from it. It’s not a joke and it’s not “less”. It may not seem as serious as other forms of this horrible disease, but it’s no less deadly in many cases. The most important thing is that it is both preventable (in many cases) and treatable, if caught early. It is a cancer that we have some say in. So, let’s not treat survivors like they are in some way, less important or valued. Their message can save lives. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] We conducted our second large survey of people who have skin cancer and asked many questions about what it's like being diagnosed with a type of skin cancer. Here are the highlights of what our community shared with us: Many shapes and sizes of skin cancer Skin cancer signs may vary but visible changes on the body were reported for every skin cancer type. There are certainly cases of skin cancer that can develop without any visible signs - so any changes in your health should be discussed with your physician. From head to toe While skin cancer can develop on areas of the body that are not exposed to the sun, most of the survey respondents listed skin cancer locations on the face and limbs. Non-melanoma (basal cell carcinoma and squamous cell carcinoma) was most common on the face while melanoma was most common on legs followed by the arms and the back. Mohs and more Skin cancer isn't always something that gets "zapped off" - 100% of respondents had surgery for their skin cancer. There are other skin cancer treatments that can be used in addition to surgery. Constantly monitoring for recurrence More than half of respondents have had skin cancer more than once. Melanoma patients were less likely to have skin cancer more than once. While basal cell carcinoma and squamous cell carcinoma are considered less serious, constant monitoring for recurrence is backed by the numbers. Is skin cancer really that serious? The emotional impact of skin cancer is often misunderstood. People needed others to understand that skin cancer is really cancer. Emotional support was reported as the assistance most needed. Living with skin cancer When asked "If you could describe Skin Cancer in ONE WORD, what would that one word be?" No matter the type, a skin cancer diagnosis can make a real impact on someone's life. From dealing with treatment and living with the fear of recurrence, it's important to people with a skin cancer diagnosis that they are taken seriously and receive the support they deserve. The Skin Cancer In America 2018 online survey gathered insights from 805 individuals who were diagnosed with at least one type of skin cancer to better understand their diagnosis and treatment, as well as the impact on their lives. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] I was guilty of it myself--saying it was “just skin cancer.” Cancer was lung cancer, breast cancer, and ovarian cancer. It was pancreatic cancer and leukemia. Skin cancer was a better type to have if you had to have it at all. I could not have been more wrong. I had no idea, in the 1990s, that basal cell carcinoma and squamous cell carcinoma existed, and I didn’t hear the word melanoma until I was in my 20s and still believed, even then, it was “only skin cancer.” Until I heard that a fellow teacher’s dear friend had died from melanoma. Not just melanoma I was in my second year of teaching in 1998 when my friend (and mentor) received the news that her childhood friend, and former principal, had passed away from melanoma. He was a well-respected member of our small county. His death had been sudden and impacted many in our closely-knit community. It was not just skin cancer to her. It wasn’t just skin cancer to his former students and faculty, and it certainly was not simply skin cancer to his children and wife. Watching her pain and witnessing the way she grieved for and with his family drove home the seriousness of his diagnosis. Skin cancer hitting close to home Years passed, and I heard about skin cancer more often. I thought of my friend’s loss each time the word melanoma made its way into a conversation. In 2005, my stepfather’s best friend lost his wife. She, too, died from melanoma. Hers was also particularly aggressive, and she lived only a few short months following her diagnosis. She was, at the time of her death, an avid tanner. Things were beginning to come together for me. Skin cancer was hitting closer to home. I tanned and had since I was a young girl. Beginning at the age of 12, I tried to tan outdoors. I became a regular tanning bed user in 1992 and was still visiting salons regularly in 2005. Then it happened to me Two short years later, my world turned upside down. I was a mother of two young children and never for a minute had considered what their lives would be like if something happened to me. I was diagnosed with melanoma in 2007. A malignant mole on my upper arm was excised, and I began regular visits to my dermatologist and consulted with an oncologist. Several Mohs surgeries to remove basal cell carcinomas and four rounds of Efudex later, I am still discovering precancerous spots with my dermatologist. There was never a good skin cancer. I just didn’t know it. Sadly, it took watching two families close to me suffer in addition to my own diagnosis for me to realize the truth. Skin cancer is the real deal Skin cancer took on new meaning. It was the real deal. It was both vile and deadly. The bottom line? Skin cancer is cancer. I can vividly recall the first time I faced conflicting feelings of both rage and remorse upon being asked, “But you just have skin cancer, right?” Rage welled up inside me because I knew the fear I had felt when I was told I had melanoma. I remembered the stabbing pang of regret for the years spent tanning and the moment I realized I might have avoided this moment altogether. How could anyone say that? My friend’s teary words and the picture of my stepfather preparing to attend the funeral of a woman who had died far too soon came to mind. I didn’t just have skin cancer, and neither had they. How could anyone say it? I had said it. Ashamedly, I am sure at some point, I had uttered the same words aloud to someone, not unlike myself. While I felt my face get warm and my frustration growing, my throat snatched back my words before I could hurl them angrily. I knew what it was like to believe skin cancer wasn’t as significant or as serious as other types of cancer. I had been there. As quickly as my anger had welled at the words “just skin cancer,” remorse took over. My taking offense and showing indignation would not educate others. Voicing the reality As calmly as I could, I answered, “Actually, it is cancer. My doctor managed to get it all, but I will have regular skin checks by my dermatologist, and I have to watch my skin for changes. Hopefully, I won’t have to deal with it again, but I have heard it can reoccur in other places.” (That has been the case with my basal cell carcinomas.) Ten years ago, I wasn’t prepared to educate others about melanoma and basal cell carcinoma. Now that I have been on both sides of the fence, I am more prepared to answer questions and much more aware of those who still believe skin cancers are less threatening. Skin cancer education is vitally important to changing hearts and minds and saving lives. With all of the anxiety, burden, and heartbreak-- skin cancer is cancer. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] I was actually told this by a friend, a week after being diagnosed stage 3 malignant melanoma. My 13 year old son had spotted a mole on my ear and I was misdiagnosed by a pharmacist who told me it was an infected spot, “if it gets hot, go to a doctor”. 3 months later my mum spotted “Fred” behind my ear and sent me straight to the doctor. I was told on a scale of 1-10 I was a 9 for cancer and fast tracked. I had my first operation September to remove the initial mole, October I had wide local incision with reconstruction of my ear and a couple of nodes removed. They showed positive for cancer so on Friday 13th January I had the lymph nodes and my parotid salivary gland removed. After testing they all showed microscopic traces of cancer so I had intensive radiotherapy. I’m now waiting to see if I have to have immunotherapy. Limbo is hard. On the positive note, I have no mortgage now, my 14 year old has taught himself to play the guitar as a form of therapy and it turns out he has a natural talent, I’m a hope ambassador for Cancer Support Yorkshire and I have a new outlook on life. I don’t sweat the small stuff and have truly learnt who my friends are. Unfortunately I lost my so called best friend who lied about having cancer!!! Who lies about that!!! But I’m better off knowing that the people I have in my life are real. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] When it comes to understanding skin cancer, the public suffers a big misconception that the diagnosis isn't a big deal. Many even forget that it's still a life-threatening cancer. A lot of folks believe that if their dermatologist finds a cancerous growth on their body, that the follow-up is nothing more than a simple in-patient, painless procedure. Anyone in the SkinCancer.net Facebook group can share that this isn't the case. Far from it. In early April, we posed the question, "What do you wish others knew to change the misconception that "It's just skin cancer"? Fifty-eight of you spoke up-about the surgeries, the scarring and the threat to life that is skin cancer. Here's what you wished more people understood. Skin cancer can metastasize "It can travel anywhere else within your body …" Once melanomas become metastatic, they can travel anywhere in the body-including the lungs, liver and brain. This surprises most people, as melanoma is caused by the sun as well as tanning beds, and these organs are never exposed to light. When melanoma is spreading, symptoms can include trouble breathing or swelling of the liver. These complications are undeniably very serious. "My skin cancer is now in my lungs. I'm having an MRI of my head to see if it's in the brain now, too. I was told the treatments aren't working and melanoma is spreading. Feeling so devastated and afraid. And you say "just skin cancer"?? Oh my... how horrible it is." "I lost my dad to melanoma of the liver. So I take it seriously." Surgeries can be intense and painful "I have had five skin cancer surgeries …" Many people diagnosed with skin cancer undergo surgeries to have the cancerous areas removed. These surgeries can be intense and largely painful. On top of that, because most initially affected areas are external, patients have to learn to accept a post-op appearance, which can negatively affect self-image. "I came within a few millimeters of losing my eye, and maybe my life. I did lose my whole right cheek, and ended up with the ultimate facelift when they pulled my throat up to my eyeball!" "I have had five skin cancer surgeries at Huntsman Cancer Institute... . None of them was a walk in the park. Wound care after is a challenge besides!!!" Check out part two of the truth about skin cancer from our community members. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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