Education, prevention and support for the most serious form of skin cancer.

Brandy Coxson

January 18th, 2017

My name is Brandy I was diagnosed with stage 3b at the age of 19, scared I was to death. Without treatment, my survival rate was 6 to 10 months and with treatment 5 to 10 years. My only hope was to do a clinical trial, which I did in 2001 interveron alpha 2b, and that is what saved my life. I did a year straight of it, now here I am 15 years later. Put your faith in the Lord and he will save you.

Hilary Dillon

January 18th, 2017

I had just turned 25 when I was diagnosed with melanoma, although I probably had it a few years prior. I was always one to indulge in the sun, but never more than ordinary. When I was in high school I used tanning beds sporadically, for proms and dances. I was always in Cape Cod in the summers, constantly in the sun at the beaches. I usually wore sunscreen but typically after I was in the sun for an hour or so. Being in the sun was something I took for granted.

I first discovered the mole when I was 21. It was on the inside of my right knee, and it was pretty small, but abnormal in color. I saw a local dermatologist who wasn’t worried about it, told me to keep my eye on it. If it changed shape or color, to go back and get it re-checked. Well, two years later I started to notice it turned from a red to a brown color, and it was spider webbing out, just a little bit. I mentioned it to my primary care doctor, who recommended me to another dermatologist. This time, the dermatologist confirmed that I should get it removed, calling it “a little funky looking”. Next I saw a plastic surgeon who would do the procedure in order to reduce the scarring, since the mole was in an inconvenient spot, where I bend my knee. The surgery was scheduled for mid-September and it was pretty quick and painless, I was back at work the next day. The doctors told me they would run the standard biopsy and contact me in 7-10 days if the results were positive. I had no anticipation that they were going to contact me.

I was in Florida on a business trip when I got the call. My mother was the one to deliver the news actually because they called her first. She told me that the biopsy for my mole tested positive for melanoma. They asked me to fly home early so I could meet with an oncologist at Dana Farber in Boston. I was told that they would have to go back in and remove more of the melanoma, as it was very deep. I was scared at this point, but I really didn’t have much information so I of course tried to stay positive until I learned more.

Both my parents came with me that day. We met with the surgeon who would be doing my second surgery, and the oncologist and her team to explain next steps. They were very hopeful with my diagnosis, reiterating that they believed they found it at an early stage and it was very treatable. To hear those words in such an intense environment, was honestly a blessing. It’s scary not to think of the worst possible scenario, but I had to stay positive in knowing that I was lucky to find it at this stage. They were unsure whether or not it spread to my lymph nodes, but informed me they would test the nodes in my groin in order to know more.

The surgery was two weeks later in Boston at Brigham & Women’s Hospital. It was scheduled for the afternoon but I had to arrive early in the morning for them to test my lymph nodes with blue dye. It was a very long day, but I was excited to put it in the past. The weeks following were a struggle, recovery is the worst part. I couldn’t bend my knee for 6 weeks. I was on crutches in an immobilizer, followed by braces and physical therapy. The results came back about a week later, my plastic surgeon called me first saying the lymph node biopsy came back negative. The melanoma hadn’t spread to my lymph nodes. This was amazing news, everyone was very relieved.

Now, I look forward to a healthy future, with lots of sun protection. I hope to spread my story as much as I can in order to promote melanoma awareness, the risks involved, and the precautions people can take to avoid it.

Krysta Mochi

January 10th, 2017

I was diagnosed with melanoma when I was 14 years old. My parents received a phone call with my diagnosis on September 30, 2008, just a few days after my first visit to the dermatologist. There was nothing prompting my visit. I hadn’t noticed any peculiar moles I thought I should get checked out, nor was I advised to visit a dermatologist by my primary care physician. The reason for my visit was that the dentist had noticed a dark freckle on my brother’s lip during his checkup, and they recommended that my mother take him to the dermatologist and get it checked out to be safe. His freckle turned out to be fine, but my mother figured she might as well take me to get checked too, just in case.
My first visit was in September 2008, just after I had started eighth grade. I had one biopsy to remove a dark mole on my upper left arm. The dermatologist thought it was nothing to worry about, but wanted to be sure. A few days later, we got a call saying the results came back: it was melanoma. At the time, I didn’t understand very well what melanoma was. I had never even heard of it until I was told I had it. I never went tanning, was always extremely cautious of the sun, and made sure to reapply sunscreen. Although I have red hair and fair skin, I never even thought about skin cancer because of how diligent I was with sunscreen. After my diagnosis, I was more concerned with the surgeries, doctor’s appointments, and especially the scars that were to come, so I never fully understood just how serious melanoma was.
My parents took me to Mass General Hospital a few weeks later, where the doctors there performed another full skin check to make sure they didn’t see any other concerning moles. They then explained what the surgery on my arm would be like, and we scheduled an appointment to remove the melanoma. Just about two weeks later, on October 17, I returned to Mass General to have my melanoma removed. This would be the first surgery I had ever had, my first time being treated in a hospital, and my first time getting stitches. Even though I had just been diagnosed with the deadliest form of skin cancer, everything was happening so fast that I couldn’t seem to wrap my head around it.
I went home after the surgery and despite having a very sore arm, everything went pretty smoothly and we were expecting a quick recovery. The doctor put in dissolvable stitches and said the scar should heal quickly. A few days after the surgery, I noticed that the wound didn’t seem to be healing properly. My parents and I went to my pediatrician, who said everything looked normal and not to worry about it. However, a few days later, something looked really wrong and my arm wasn’t healing properly at all. My parents took me back to the pediatrician, who said we should go to the ER right away. At the ER, they informed me that my arm was infected and they needed to remove the stitches to treat the infection. I had to stay overnight in the hospital for the first time in my life and remember waking up the next morning surrounded by doctors discussing my arm. I returned to Mass General a few days later for my surgeon to put new stitches in. After this, he said we needed to have visiting nurses come to my house every day to monitor the stitches and clean my arm. I missed about two weeks of eighth grade because I needed to stay home for the visiting nurses. I fell way behind in my classes and got a tutor to catch myself up.
Due to the infection and the new stitches, my scar ended up being a lot bigger than it was expected to be. I wore large bandages over it every time I went to the beach or was out in the sun for a long period of time because it was so susceptible to sun damage. I returned to the dermatologist every three months to get my skin checked, and still do to this day. Around December of 2011, when I was in my junior year of high school, I noticed a dark brown spot in my scar. I went to my dermatologist in January of 2012 to get the area biopsied. The results showed atypical melanocytes. After much discussion with multiple dermatologists and surgeons, it was decided it would be best to fully remove the scar. This would eliminate the risk of leaving behind any atypical melanocytes in the scar, since it was the site of a previous melanoma and at great risk.
I went in for surgery to remove my scar on February 28, 2012, at Children’s Hospital, during my junior year of high school. I missed about 4 or 5 days of school for this surgery. Since the scar they removed was so large, my new scar would be about 6 inches long. I had to wear my arm in a sling for 6 weeks after surgery, which meant I also couldn’t write for about 6 weeks.
My surgery to remove my melanoma was 8 years ago and my scar revision surgery was 4 years ago. Since my first dermatologist visit, I have had 22 biopsies and a minor surgery to remove a mole on my chest that was noncancerous, but atypical. I have been melanoma free for 8 years now. Now, I’m 22 years old and a senior in college. I visit the dermatologist every 3 months and wear sunscreen daily. I volunteer with the Melanoma Foundation of New England on the Speaker’s Bureau and with the Your Skin Is In program, encouraging high school and college students to protect the skin they’re in. I hope that my story can show people that melanoma can happen to anyone, at any age. That’s just all the more reason to take care of your skin and protect it from the sun. After my surgeries and complications with melanoma at a young age, I never talked about it much; I just wanted to be done with it and move on. I’m glad now that I have the chance to speak out about my experience, and I hope I can educate others on how to take care of their skin and prevent melanoma.

Mikala Zylinski

January 10th, 2017

My cancer scare changed my life. I’m grateful for every new, healthy day I have.
It all started in June 2013, my best friend noticed I kept itching a mole on my back. She took a look at it and immediately told me I NEED to get that checked out ASAP. She kept saying “it could be melanoma.” I knew weeks before that it was growing rapidly and that I probably should get it looked at but I put it off. Until that day, something in her voice scared me.

On my lunch break from work I called the dermatologist. They said they happened to have one last appointment open for the very next day, and not another one available until September. I took the appointment for the next day. I went in to meet Dr. Smith and he told me the mole didn’t look right and we should probably take it off to get it sent to the lab. A few days later I was at home with my fiancé and I got a call from Dr. Smith. He said I have some unfortunate news, “you have Melanoma”. I couldn’t even believe it, I hardly knew anything about skin cancer but I knew that melanoma was “the worst of the 3 types.” And I am 2 months pregnant! As he kept explaining the next steps for this I tried to hold back my tears. I barely even heard anything he said. All I could think about was how one minute I’m fine and the next I have cancer. CANCER! That horrible word you never want to hear that someone has that horrible word you associate death with.

I then of course googled everything about melanoma. I read all the horrible stories and all of the life expectancies depending on what stage you have and how deep the actual tumor is into your skin. I called the Doctor back to get more answers now that I knew what I was actually dealing with. He said I have stage 2C. That means the melanoma is 4+ mm thick and is ulcerated. A few weeks later I met with an oncologist and a surgical oncologist. They explained the grueling procedure to me, even told me I should think about aborting my pregnancy. Melanoma was 1 of 3 cancers that can actually cross the placenta to the baby. It’s a 3% chance of happening. I decided to take my chances. I scheduled my appointment for surgery. I had to wait till I was in my 2nd trimester since I had to get general anesthesia. July 16th was surgery day. I was super nervous. They made an 8 inch long excision on my back; I had a few lymph nodes taken out in my neck and right underarm. I was supposed to be able to go home after surgery, but since I couldn’t stop throwing up I had to stay the night. I was in so much pain; I couldn’t even go pee on my own. I couldn’t get in or out of bed without someone helping me.

All I could hope for was the phone call telling me it went well. I had to wait 8 long months of pregnancy before I could get scans to find out for sure that the cancer was gone. I was told I had a “possible” positive lymph node. That would put me at a stage 3 melanoma. I ended up going to Dana Farber in Boston to get a second opinion on the lymph node. That was ruled out negative. Thank God. January 31st my precious little Myla was born. A few weeks later I got my pet scan and brain MRI, and about an hour after that I was finally able to say that I am cancer free! For the next 5 years I will have to get pet scans and ultrasounds on my lymph nodes every few months. I have a 50% chance that the Melanoma will return. Until then I will enjoy life with my family and friends, and pray that it doesn’t come back. All those years I went tanning and would lay out in the sun are coming back to haunt me. Wear sunscreen people! It can save your life! Maybe I can save somebody’s life by sharing my story and having them think twice about that tan they think they need.

Lauren Douglas

January 10th, 2017

I had a freckle on my arm for years, as long as I could remember it was there. Throughout my 20’s I enjoy the beach, sports and outdoor activity. However, I was not the most diligent about remembering sunscreen. I’d attend a weekend rugby tournament and apply it a few times but always ending with a slight burn. I always thought that I was too young to worry about the damage it was doing to my skin and deeper within my body. In other words I believe myself to be invincible.

Over time that freckle changed shape and began to rise off my arm, catching my attention. Friends and family would urge me to have it checked/get it removed. I heard them and understand what they were saying to be valid, but again that surge of invincibility would hit. I ignored it for about three years watching it change, until it began to frighten me.

This past January (2016) I went into the dermatologist to have it looked at. He immediately had it taken off to biopsied, reassuring me it didn’t look like cancer, but it didn’t hurt to check. So check we did. He told me that we would have results in a week, via a phone call or a postcard in the mail saying it was benign. The week flew by, I went about my everyday business, exactly a week later I waited during the day for a call. I finished my work day and went to pick up my girlfriend from work thinking its past business hours, doctors never call after 6. At 7:40pm my phone rang and I picked it up to my dermatologist saying the freckle is melanoma. He referred me to a surgeon to have it excised and sential node biopsy. The call was surreal, I didn’t take in half the information I was suppose to. I called my mom fearing giving her the bad news, my grandfather (Her Father) died 10 years ago from melanoma. So the mere word struck fear in both our hearts.

That phone call lead to a Smillow Cancer Center at Yale New Haven Hospital, where I met my wonderful surgeon Dr. Han for the first time. He sat patiently with us as he describe the severity of the cancer, it was believed to 1.2 mm thick in my right fore arm. He gave all the statistics and we set a date for surgery. February 8th.

I felt like I was in an alternate universe, how could I possibly have cancer. I was in the best shape of my life training for the upcoming rugby season (We are going to Nationals), I was volunteering at my firehouse and had just obtained my dream job. This could not be real. I cried of course and was consoled by friends and family, surged forward with a positive attitude from all. Waiting the two weeks between setting the surgery date and the actual day was brutal. I just wanted to get it over with and fight it.

On Feb. 8th I had the surgery under the wonderful care of Dr.Han and The Smillow Cancer Center. The melanoma turned out it be 2.5mm deep and the incision about half my fore arm. They removed three lymph nodes for testing and sent me home. I waited two weeks to hear back the results, I had trouble sleeping and focusing, I wanted all the answers. Today, I saw Dr. Han again, It did not spread to my lymph nodes and was successfully excised from my arm completely. It was the best news I have ever received, I know there still is a long road of watching and making sure it does not return but I am thinking positively. Thanks to my family and friends I can say I am now a survivor.

Tammi Lotter

January 10th, 2017

I was born in Durban, South Africa in 1977 and moved to London in 2001 and was having the time of my life! I was living in an exciting city, traveling the world and meeting new people – I couldn’t have been happier. I had noticed a new small black mole on my right arm that had appeared just below my shoulder but as I have several moles all over my body I didn’t pay much attention to it. On a routine visit to my GP in 2004 when I had flu, I asked him about removing the mole (purely from a vanity point of view!) Thankfully he had specialized in moles so when he had a closer look at it he agreed to remove it and said it would be sent off for testing. I received a phone call from the Doctor several days later with the diagnosis that this was in fact a melanoma. He told me that it was stage 1A and the breslow thickness was 0.62mm. He explained that I would need to have plastic surgery on my arm after a wide local excision to ensure it did not spread. I took the news very well as I knew it had been caught early and that I was likely to be fine thereafter. It was only a few days later when it really sunk in that if I hadn’t have been vain and wanted to remove the ugly mole, or if the mole had been somewhere else on my body where I wouldn’t have noticed it, the outcome would have been very different. That gave me a serious fright because I was so lucky things had worked out the way they did. I had always spent time in the sun growing up and whilst living in London used the occasional sun bed in winter. Looking back now it is incredible that even in 2004 there was not much awareness about the dangers of sun beds. After the wide local excision I went for check ups every 6 months for 5 years but did not have any further issues. I moved back to South Africa in 2009 and in 2012 had to have plastic surgery on my nose to remove an invasive basal cell carcinoma. I go for regular check ups every year and try to spread the message to family and friends that it can happen to you and that skin cancer can be deadly! Please continue to use sun screen and protect your body from the sun at peak times of the day – once you have been affected by skin cancer there is a high possibility it will reoccur. Stay vigilant.

Allison Smith

January 9th, 2017

So, this has been a rough year and a half. Never thought this would happen to me and never
questioned why me, it’s just life. The hardest part really, has been how my parents and family members have worried about me through the whole experience.
My Story is:
Last March 2015, I had a planter wart on my left foot, for almost 7 years. Prior to that, I saw many, many doctors who had treated it. I had burning of this lesion, many chemical treatments, laser(which came back within 2 weeks while healing), many shots, freezing, for years. Nothing worked. Shots into the foot hurt more than anything, it’s not the needle, but the numbing solution that hurts so bad. I knew in my heart, I would be headed for a difficult road.
On May 22, 2015, I was diagnosed with squamous cell carcinoma on my left foot. It was my 51st Birthday.
Who gets cancer on their foot? This is very rare. This is a learning experience and out of all this;
I hope people become more educated on the HPV virus of the feet. Yes, a HPV virus, turned into cancer.
So people need to check their body, any type of injury or the slightest open cut, crack or wound can be exposed to the virus. You could get it from a pool, shower, etc., it can linger in your body for years and then exposed itself. If it is not responding to treatment, a biopsy is needed. This is the most disgusting thing I have ever seen, very destructive. I took pics through out the whole treatment of my foot and they are nasty.
So, I saw the best Plastic Oncology Surgeon in the country at University of Michigan and I was on my way.
I was very fortunate to get the best treatment, this cannot be removed even by a regular Podiatrist.
The first surgery was 09/07/16, wide excision removal of tumor, and placement with integra. Integra is made of a sharks cartilage and cows protein. Amazing. Surgery went well. A week later, found out all margins were clear, a blessing.
This tumor was so destructive and I was left with a hole about the size bigger than a golf ball. The surgeon saved one of my toes. I had to change my bandage 3x’s a day and in the beginning, you could see my tendon and the toe that the integra was made it help heal. Blessed and going well.
Second surgery was 10/14/16, they did a skin graft over the integra. Took skin from my upper thigh and transplanted onto foot. Yikes, the skin graft hurt more than my foot. I was very fortunate not to have
to go through any chemo or radiation. I do not think I would have went that road anyway. I’d been through too much and really think it would have made things worse. That is just my feeling.
With the help of my beautiful husband, parents, aunt and family, I did it. I’m now able to walk on this foot, after being off of it for 5 whole months. In a great place now with physical therapy, 3x’s a week/presently.
I will always remember calling my parents the day I was diagnosed. My head was spinning, trying not to cry. Dad answered. I said “dad please give me a minute,” I cried anyway. Dad said “you are going to beat this and come out well.” My dad is an 8 year cancer bladder survivor.
I was told by my mother, my dad cried every day for me, he never showed it.
Please everyone know, you are not alone and you can do this.
If anyone would like to contact me; askaysmith17@yahoo.com
I’m a survivor.

Jennifer Tressler

January 9th, 2017

I am blue eyed, blonde, and raised in California. I knew that skin cancer existed, but was a vague and distant non threat.
When I realized that I had a “freckle” on my upper left arm that had maybe grown and darkened, I went and had it looked at. I was told that it was “nothing”.
Fast forward about four years, that same spot had changed colors; it was half brown and half blackish. It also had an odd tingly sensation to it, which I realized wasn’t right. I had another doctor (I had relocated) look at it, and although he also said that it was nothing, he did agree to remove it and had it biopsied. A week later, I was very surprised to receive a call from his office, asking me to come in at my earliest convenience, no appointment necessary.
Once there, they hustled my husband and myself into the exam room, and the doctor came in and said the words… Malignant Melanoma, Stage ll. He said that the next step was a wide local excision, with a lymph node search and biopsy. I felt totally fuzzy about everything coming out of his mouth. He kept saying “You CAN survive this”… Before I left, he repeated it again, and he said, are you understanding what I’m saying? I said Yes, this could potentially kill me.
A week later I had the WLE. The nuclear medicine was the worst, injecting that horrible dye into my site. WOW, was that painful. The surgeon had already told me that their staging was more of a 1, although, again, with no letter or definition. I still do not know why the original path report said stage two, but the surgeon said one. He said that the slnb was probably not necessary, but I wanted it done for sanity’s sake.
Surgery went fine, they found no further cancer cells in the skin or the lymph node, which I didn’t find out for another week. I did have one follow up with an oncologist, who told me that no treatment was necessary. I was told to have six month dermatology exams, and otherwise no further care would be needed.
Needless to say, since that experience in 2009, I have the typical heightened awareness of what goes on with my body. I had a big horse accident in 2013, in which I broke two vertebra and suffered a subdural hematoma. The worst lingering effect is that I have a large patch of skin on my back which has zero feeling. Total numbness. I also have lots of aches, cramps, and pains in my torso. When you lose an inch in height, everything gets crowded inside, I guess, and the parts no longer happily cohabitate. So when I feel weird pains in my gut, in my back, in the kidney area, I have no idea whether it’s the dreaded melanoma, or a simple cramp or spasm. It makes it all so unclear!

Christina Rinderle

January 9th, 2017

I recall that my family members mentioned the unusual mole several times, but I didn’t pay much attention to it. It wasn’t until my daughter insisted I have it tested that I began to be concerned. Being concerned and acting are two different things; I did not act until the mole began giving me the sensation of something crawling under my skin. I took a day off from work to have the mole on my ear biopsied and to see a specialist about the freckle on the retina of my eye. I was advised not to worry about the eye freckle because it was flat, but I learned a few days later that I had melanoma on my ear. I was away at a conference and my son advised me the doctor left a message to call him back regarding the biopsy results. That was a huge red flag to me as I expected either a letter with negative results in the mail or to hear from the nurse practitioner who performed the biopsy. I called him back on my lunch break and was completely blindsided when he told me I had melanoma. He advised me that he believed my prognosis to be good and that he would refer me to a surgeon immediately. My father had melanoma and has been cancer free for 10 years so I took the news in stride while I comforted my husband with the results. We didn’t tell our children; there were so many other uncertainties in our lives at the time so we waited until closer to the surgery date. On the day of surgery, we were told a large portion of the ear would be removed and a skin flap made where my ear could be “tucked into my head” until a secondary closure could be completed with a skin graft. I had googled images of the surgery so I would know what to expect and it wasn’t pleasant. The surgery was placed on hold because of an enlarged lymph node behind my ear that would need evaluation. Three weeks later, I left the hospital with a mini left ear, shaved hair near the operation site, and a 4 inch incision from the lymph node removal. Ear cartilage is very sensitive and my entire ear was reconstructed by a fabulous plastic surgeon oncologist. The margins were clear and the lymph node was negative. I am cancer free and have been for four months. I look at life differently now. I traveled this summer to the Grand Canyon, a place I have longed to see for many, many years. It was breathtaking and I balled like a baby. I kept thinking if my daughter hadn’t insisted I have the mole tested, I would have died without seeing this beautiful and amazing place. I expect to be cancer free for a long time and I show my ear to as many people who will look at it to bring awareness of Melanoma. I want everyone to know that early detection is the only real cure. A mole on the back of my ear was not something I would have noticed. I should have gone to the dermatologist for a full body check because of my family history, but I didn’t. My family saved my life. Now, I want to repay the favor by bringing awareness through my story. Pay attention to yourself, know your family history, get regular checkups and visit your dermatologist. Don’t blow it off if someone tells you to get a mole checked. It could save your life.

Sandy Webb

January 6th, 2017

My name is Sandy, I’ve been married since 1979, I have 2 daughters and 3 grandsons. I’m 54 years old and a first grade teacher. I had melanoma on my leg in 1997. That mole followed all the ABCD’s that we’ve always been told about. It was less than 1 mm deep. I had a wide and deep excision and have never had another problem with that melanoma. Then last year I noticed a small “blood blister” looking growth on my forearm. Of course, I start self diagnosing on google and determined I had a blood filled mole, no big deal. Self diagnosing was my first mistake lol. As months passed, this “mole” started changing from red to skin color and got more hard. Well, I had had melanoma and I KNEW this wasn’t that, because it didn’t follow any of those ABCD’s! It was colorless and perfectly round and raised. As it grew, it was just ugly and annoying. As the school year was coming to an end, it started bleeding some when I’d dry off with a towel. So, I FINALLY made a dermatologist appointment. I couldn’t get in until the middle of July. He said he would remove it and it looked to him like a basal cell, no worries. We went on a family vacation and the last day of our trip, I got the call that I had what is known as amelanonic melanoma. It is very rare and considered deep at 2.6 mm. It was also ulcerated. I live in Texas, so they sent me to MD Anderson. I was scared to death! I had 2 baby grandsons, another on the way. This can’t be happening to me! I knew all too well how dangerous this could be. So I met with my surgical oncologist who I loved, and she explained that they would do a sentinel node biopsy along with the excusion. There was a 25% chance it had gone to my lymph nodes. I had my surgery Aug. 10 and it was 2 weeks before I got the news that my lymph nodes (she took 3) were clear. Praise God! I have to go back every 2 months to be checked, but it looks like I’m going to be ok. I’m trying to raise awareness of melanoma. Especially since mine didn’t present at all like people think. It looked nothing like the pictures you see on the Internet. This is a deadly disease, but if caught early, very treatable. If you’re reading this, then more than likely, either you or someone you love is experiencing melanoma. It is so scary. I understand. Every day I pray for anyone waiting on test results of any kind because it’s a terrible feeling. I really hope my story helps to inspire and educate. If it’s new or changes, get it removed! The day after I got the good news about my nodes, my third grandson was born and I plan to dance at his wedding!

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