Friday, February 1, 2013

Melanoma??

If you follow the blog on Facebook , you know that 2013 has already been a challenging one for our family. I withheld the details until we knew with what we were dealing...

Melanoma... it sounds scary, right?
I have to be honest, I never realized how scary it is until now...

I know this is a long post, but please take the time to read it to the end. Armed with information on Melanoma, you just might save your life or someone else's!



This beautiful 20 year old young woman has Melanoma. Thankfully, it appears we caught it early, but she will always be at risk for recurrence and must be vigilant with skin protection and watching for signs and/or symptoms of recurrence. If you thought melanoma only affected older people, you are mistaken! It is on the rise in young adults..our daughter is living proof

Madison is an equestrian and has always spent a lot of time outdoors. Additionally, she would tan periodically prior to special events. We have always pushed the use of sunscreen, but I wish we had been more adamant, and I wish I never signed the release for her to use a tanning bed. In the horse world, everyone spends much of their time outdoors. I'd like there to be more awareness targeted at equestrians on how to best protect themselves and lower their risk of skin cancer. Professionals in this industry are exposed to the sun's rays several hours every single day. Anyone with that much exposure should take extreme caution when it comes to protecting themselves from skin cancer. And no one should ever use a tanning bed!

 On January 3rd, our beautiful daughter, Madison, went to the dermatologist to have a mole checked. She first showed me the mole in May of last year, and it didn't look like anything other than a mole. When she came home from college in mid November for winter break, I noticed the mole looked bigger. Upon closer inspection, I noticed it had funny looking borders and wasn't symmetrical anymore. Now it looked scary! I called the derm's office right away, but they couldn't get her in until January!! We went about the holidays not thinking much more of it, and then on the day of the appt the doctor alarmed us!

The dr did not like the looks of this mole at all, and scheduled surgery within the hour! She removed the entire mole and a good amount of tissue surrounding it and sent it off  "stat" to be examined for skin cancer. 

We left the office dazed, and Madison's leg bandaged, scarred, and sore. We didn't understand the big deal. It's skin cancer - you remove it and it's gone... right? WRONG!  So we waited, and waited, and waited for the results. Madison went back to GA for the winter quarter just a couple days after surgery, and we waited some more! Finally, after 2 weeks from the actual surgery date, Madison called the office for the results...

On the afternoon of January 17th, my beautiful baby girl called home to explain she has melanoma and has to drop everything to come home for surgery. WAIT! WHAT?? Why did it take so long to get bad news? I always thought bad news traveled quickly! Not necessarily when you are dealing with melanoma...

Because of Madison's young age, the original pathologist wanted to be sure of his findings. He sent her tissue to Cornell for verification, which is why it took so long.  Armed with the pathology report, the doctor explained the cancer extended down 1.58mm, which is considered an intermediate depth and cause for concern because it could have entered the blood stream and traveled to other parts of her body. Therefore, they needed to take more tissue from her leg (the site of the mole) and do a sentinel lymph node biopsy to see if the cancer has spread. The consult with the surgeon was already set for Tuesday and our heads were spinning!

Let me tell you, we have been through a lot (read more here if you like), but this was the most difficult call I have ever taken in my life. My beautiful, sweet girl is just 20 years old and 5 hours away. She had to hear she has cancer...and I'm not there to give her a hug. It was torture! We cried on the phone, and I told her it would all be just fine. She would come home, have the surgery, and then go back to school and move on. It couldn't possibly have spread to any other parts of her body already! It's skin cancer! They remove it and that's it...Little did I know about melanoma....

I decided right away we were driving to Savannah to pick her up. So, I called Don at work and gave him the news and told him we were leaving in the morning. Then I called the college and explained the situation. The school was wonderful and said they'd like to meet with us to arrange some accommodations with Madison's professors. They fit us in for the next day while we were in town to pick up Madison.

After meeting with the school, and ensuring Madison would have a 14 day extension on all of her missed assignments and tests or quizzes, we had some lunch and got on the road for home. This was on a Friday. Madison didn't have an appt until Monday. She was scheduled to have a skin check with the dermatologist to look for more suspicious spots (If you've never had a skin check, please schedule one now if at all possible - it might save your life).  In the meantime, I made it my mission to learn more about this cancer. I started googling....

Google is a wonderful tool I use every day, but as most doctors will agree, it is not necessarily a good thing when you have a medical concern.  After reading many horror stories about melanoma and learning how quickly it can spread, I was worn out, crying, and had a very bad feeling about what we were facing. I changed my approach and started googling melanoma survivor stories. This is where I should have started. Just knowing that people do survive, even the late stage (albeit rare), was the hope I needed.  Of course, we wouldn't know Madison's stage until after surgery, but I needed to know the what ifs... If this thing had spread to her lymph nodes I needed to be armed with information to support Madison and make her feel comfortable with what she was facing.

I learned that melanoma is something to which everyone needs to be more aware! I am 45 years old (shhhhh don't tell anyone! let's just keep that between us, k? k) and knew of melanoma before this, but I didn't know what I didn't know about this horrible cancer. And what I didn't know is just how deadly this cancer is! Like many cancers, it is best to catch it early before it spreads.  When melanoma spreads (and it can spread quickly) it is very difficult to treat. As a matter of fact, the normal chemo and radiation doesn't work all that great on melanoma. If the surgery revealed cancer cells in Madison's lymph nodes they would have to do yet another surgery to remove the rest of the lymph nodes in the area, which is typical of most cancers, but after the not so nice recovery from that surgery, the patient is then treated with an immunotherapy drug that basically gives a boost to the immune system to help it in fighting the cancer. It is very toxic to the body and makes most people very sick, not unlike chemo. Unlike chemo, it does not kill the cancer cells. It hopefully helps your body do that. It is administered 5 days a week for the 1st month and then you give yourself several injections for 11 months after that. It can be so debilitating that many people never complete the treatment, and the treatment has very little affect on recurrence. I was also surprised to learn that radiation has not proved effective on melanoma either, as Melanoma is mostly radiation resistant.

Madison's surgery was scheduled for Friday, January 25th at 10am. She had to be at nuclear medicine at 8am to have a radioactive dye injected into and around the site where the cancer was found. This dye would then travel through her to the lymphatic system. The first lymph node it reached is identified as the sentinel node. During surgery the doctor uses a Geiger counter to locate the radioactive material and remove the sentinel node. After removing the sentinel node they would send that off to be tested to see if there are any cancer cells present. The dr also needed to remove more tissue from Madison's leg at the site of the mole. Although the margins of the first surgery were cancer free suggesting they got it all from that area, there were still portions of the mole at the margins. Seeing as this mole has already proved to be unfriendly, the dr wanted to remove more tissue in hopes of getting the rest of it out of her. We were able to take her home that day. She had a ginormous scar on her leg just above her knee and she was very sore, but she was eager to get back to school and left on Sunday, just 2 days after the surgery, to make it to class on Monday.


While she was home, I worked hard to keep everything together and not think the worst, but once she was gone I had a hard time doing that. I cried a LOT. I tried to stay positive and am so thankful to always have many many good people surrounding me with positivity, but any little thing would bring on the tears. It was a stressful few days waiting for the results, and we didn't expect the results until the first of February! A full week after the procedure!  So I was thankful when it came sooner....

The best call I've had in a long time came the morning of January 29th when the surgeon called to give me the good news. They did not find any cancer cells in the sentinel node! As far as they can tell, Madison is cancer free! She will need to be monitored by an oncologist and have her skin checked every 3 months at the derm's office, but other than that she can continue as normal! Praise God! My beautiful girl has been through so much in her young life, I just couldn't imagine her having to endure any more. She is such a strong person as a result of everything she has had to overcome; she amazes me everyday.

This experience has been an eye opener and very scary. I knew this was serious because of the urgent way the doctor was handling it (thank goodness!), but I had no idea how scary until I started my research. Why is that? Why didn't I know this about melanoma?? Melanoma is a skin cancer to which we are all susceptible! Shouldn't we all be armed with information to better protect ourselves??

YES WE SHOULD!!! Which is precisely why I'm writing this post!

I want to caution that I am NO EXPERT on Melanoma - not by any stretch of the imagination. I have just begun learning about this disease, and I know I have a lot more to learn.  Please do your own research and learn more about Melanoma so you can protect yourself and your loved ones - specifically your children.  Protection from this horrible cancer starts young. We need to protect our skin AND our children's skin from the sun at all times to prevent melanoma. NEVER tan in a tanning bed/booth AND NEVER give your consent for your child to tan in a tanning bed/booth. Always protect your scalp with a wide brimmed canvas type hat, and ALWAYS slather you AND your children with sunscreen. No matter where you live... if it's cloudy or rainy... sunscreen should always be applied generously all over, even under clothing, EVERYDAY before you or your children go outside.
No exceptions!

Check out EWG's 2013 guide to safe sunscreens to choose one that is right for you. It is important to have a broad spectrum sunscreen so it protects from both uva and uvb rays. The higher spf does not provide better protection - it provides longer protection.  Be sure to use at least a 30 spf suncreen. To calculate how long the SPF will protect, you need to determine how long it takes you to burn and  multiply that by the spf. For example, if it takes you 15 mins to burn and your are using an SPF 15 then you will be protected for 225 minutes - which is 3 hours and 45 mins. Keep in mind reflective surfaces such as water and sand will decrease the SPF effectiveness by 40%! So be sure to figure that into your calculations.  Additionally, reapplying the same SPF will not protect you! If you've been out in the sun for 3 hours and 45 mins wearing an SPF 15, you will need to now apply an SPF 30 to extend your time by another 3 1/2 hours.  Also, if you are sweating or are in the water you will need to reapply often. This, in addition to shade, and a hat, should keep you well protected. Go to melanoma.org for more information about Melanoma prevention and sun safety

If you have been diagnosed with Melanoma or you are out in the sun daily, you might want to invest in UPF clothing to add an extra layer of protection. Also, a hat like this one is a must to protect your scalp!



Or NOW you can wash sun protection into your clothing with this product!! How great is that?!!



If you want a tanned look without the risks, Madison likes this product



 Melanoma is now the most common form of cancer for young adults. Like many types of cancers, if caught early, Melanoma is curable. The prognosis worsens significantly as it grows deeper into your body and affects your vital organs. Your best defense is knowledge and skin protection. Get your skin checked by a dermatologist on a regular basis. Wear sunscreen everyday! Be sure to get a sunscreen that protects against uva AND uvb rays. The higher the spf the longer it will protect you from the radiation, but reapply often if you are out in the sun for a long period of time. Pay attention to your moles and have them checked if you notice any changes! Melanoma can occur anywhere on the body, including places sight unseen. It usually appears on the trunk, neck, limbs, fingers, and toes (so check between your toes folks!), but it can form in your eyes, scalp, belly button, private areas, muscles...anywhere!  People with fair skin are especially at risk, but anyone can get it. Be aware and protect yourself from this deadly cancer.

Something else of which you must be aware is your family history. Heredity does put you at a higher risk. Get familiar with your family's medical history. I am not close with my father's side of the family and had no idea a cousin of mine passed away from Melanoma over 20 years ago at a very young age. I'm so disappointed in myself for not inquiring about our family's medical history. As a parent it is my duty to know these things, and I will be asking many more questions as a result of this. I encourage you to do the same.


This info bears repeating: DO NOT, under any circumstances, use an indoor tanning bed/booth. You are subjected to high doses of uv radiation which has proven to cause melanoma. It's not worth it folks! 

Please share this post with everyone you know. Pin it on Pinterest , share it on Facebook, Tweet it, however you choose to pass it on doesn't matter, just please pass it on so we can educate folks on this very scary cancer that just might be lurking inside you or someone you know! Save a life!


Learn more about Melanoma at www.melanoma.org




12 comments:

  1. You have such a kind heart and your passion to alert others is evidence of that. Thanks so much for taking the time to educate that...you are amazing sis......Teri

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    1. Thanks, Sis! It is a scary thing, and I'm shocked I didn't realize just how serious skin cancer can be. I feel others might not know what I didn't know as well, and that needs to be changed, especially for young people like Madison who spend much of their time outside. Skin protection needs to be stressed, and I intend to try to get this info out in other ways as well.

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  2. I found your blog by reading one of your comments on another blog. I am a 16 yr cancer free Melanoma survivor. My melanoma was caught early, but due to the location of the melanoma, on my lower shin, I had to to have skin gratfing. the site of the graft got infected, and I had a blood clot. I didn't have to have further surgery, but I was in and out of the hospital for three months, dealing with the complications from the surgery. A cancer diagnosis changes your life forever, even though I was in my late 40's when diagnosed. I ahave total body checks every 6 months, and try to wear the protective clothing. I wish your daughter well.

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    1. Thank you, Becky. Bless your heart. What a horrible experience. I am so glad you are doing well - you truly are a survivor. Thank you so much for sharing your story. I can't believe how timely it is! My daughter just got home for spring break and was talking about her scar and wondering if it should have been grafted instead, and now thanks to your posting here she is thankful for her scar. Thank you again <3

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  3. Excellent post! I just went through a melanoma scare myself and found out today I am in the clear. I truly wish your daughter had been so lucky, everybody really because this disease is an abomination. As I waited for my results, I did what you did and read the most heart-wrenching, stomach-churning stories of succumbing and survival....I am thrilled your daughter has clear nodes. I am also beginning to feel hopeful about continued medical breakthroughs. Awareness of melanoma is on the rise, and I think it's going to take all of us living with or at increased risk making a stink and getting the dollars into the right hands.

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    1. Thank you, Penelope! I am doing a **happy dance** for your good news!! Awareness is the key! Bless you!

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  4. My situation is nearly a mirror image of your daughter's. I had surgery in January, a wide local incision to remove the mole, a SLNB and a skin graft-my melanoma wad on my shin. I found the dye injection unbelievably painful, and my graft site caused pain for a good 2 weeks. I was 17 weeks pregnant at the time and so far the pregnancy has gone well considering. O received good news too and will always be diligent in protecting myself from melanoma. I too went right to Google-that will add years to your life after reading all the negative. I'm so glad your daughter's doing well and think your blog is great-informing and supportive!

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    1. Oh Jennie to be pregnant at the same time - how scary! I am so thankful all came back clean and the pregnancy is going well. Thank you for your kind words, and congratulations on the baby Try to remember to take care of yourself! As a wife and mother I do tend to neglect my health a bit and have vowed to change that! I will be getting a check-up this year for sure - it's been a while ;)

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  5. Thank you so much for sharing your story to us. I've enjoyed this a lot and I've learned a lot as well. I will share this story to my cancer alternative treatment center and hopefully they can also share this to their patients. Keep blogging and inspiring! Have a nice day.

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  6. Marion,
    So sorry for what you and Madison have been through. As a Stage IV melanoma patient, I appreciate your efforts to prevent any others from dealing with this disease. However, I thought you would rather know that "Jenny" has been hijacking any blog/post she can find with a reference to cancer in the title (including mine) to tout Branyon and her center. Turns out that Branyon is NOT a doctor, but a CRIMINAL!! Fredda Branyon of Scottsdale, Arizona, has made thousands off sick and desperate individuals. Ms. Branyon started buying umbilical cords and cord blood tissue from a Del Rio birthing center in 2009. Then, with no training regarding stem cell development or the legal ability to do so, she manufactured hundreds of vials of "stem cells". She sold 183 vials of "stem cells" for more than $300,000, to Francisco Morales, who worked with the lab she owned, Global Laboratories. Morales, in turn, led his patients to believe he was a doctor (he isn't) and was arrested in Texas for treating people with cancer and multiple sclerosis in "treatments" not approved by the FDA. Branyon pleaded guilty during an investigation by the FDA and FBI in 2011. She was facing 3 years in jail and a $10,000 fine. I hope she is cooling her heels in prison as I write.
    All sadly true. Wishing you and your family the best.

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    1. Thank you, Les. I never had a chance to check out the info, so I very much appreciate you sharing :). I'll keep you in my prayers - keep fighting <3 ~Marion

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