I am not a religious person, but the best equation I can make to waiting for scan results is sitting in purgatory, waiting for someone to decree if you’ll be going to heaven or hell. It is like that every single time. It’s not a routine medical exam. It’s not a necessary hassle. It is a time when you are waiting to find out if you get to keep living or if you may be one step closer to death. Even if you aren’t in active treatment, even if every previous scan has showed favorable results, each time you wait you are reminded that at any point your life could drastically change. And that is the reality of “surviving” stage IV melanoma.
The line between patient and survivor is blurred. People choose to think of themselves as one way or the other at extremely varied points during their journeys. Some people consider themselves survivors from day one, because every day they are alive, they are surviving melanoma. Others wait until they receive clear scans and are free from making treatment decisions. While others do not make the emotional leap until they receive a definitive “no evidence of disease” diagnosis. How you think of yourself during your journey is very personal and definitions tend to morph along the way, ebbing and flowing with the emotions most prominent on any given day.
Self-definition is a lot of things, but the thing that it’s not is a definitive transition. And I did not realize that when I started. When I was going through treatment, I assumed that at some point, the cancer would be gone and I would forever be a cancer survivor rather than someone living with cancer. I assumed that there would come a day when my doctor would declare me NED, we would have a huge celebration, and that would be that—a brush of the hands, a flick of the wrist, done. And while I am thankful every second of every day that the first two of those steps have happened, I am far from done.
Cancer may leave your body, but it is forever imprinted on your soul. You don’t just go back to normal. You are changed forever by this horrible, terrifying, painful, beautiful, awesome, brilliant journey.
You simultaneously fall into a depth of fear you didn’t even know existed and soar to heights of love and hope that you could never have imagined. For years you endure an ultra-intense, adrenaline-filled, life-or-death existence during which you are screaming with every inch of your being to please please please be allowed to live. And on that glorious day when you find out that your screams have been answered and finally melanoma is more behind you than in front of you, it is time to self-define again.
In all aspects of life, being a survivor is a commendable attribute. Being able to function and proposer in spite of opposition is something we all strive to attain. But, for me, it is too passive a definition for what happens during cancer. For me, it’s not enough to continue to function. After all that I have learned, all that I have been given, all I have seen during this journey, I need to keep it with me and allow it to continually shape my existence.
We don’t sit passively by while cancer happens to us, surviving each day by luck. We fight as hard as we possibly can. We endure levels of physical and emotional pain that most people cannot imagine. We kick, punch, and claw our way out of melanoma’s grasp. We don’t merely survive it, we conquer it. We are victors. And as victors, we wrestle and steal every ounce of love, gratitude, and beauty out of our journeys. We keep it safe and deep within us, and use it to remind ourselves of just how beautiful life is and how lucky we are to be living it. Because of our victories, we celebrate the mundane, we see joy in the ordinary, and we give thanks for monotonous every-day routines. While I am exceedingly thankful that cancer does not live in me anymore, I will forever live in cancer.
And I will never be done.
Jamie’s personal mission is to spread information about the importance of oncology clinical trials as far and wide as possible. To this end, she is involved with MRA and other melanoma focused advocacy groups, Imerman Angels, and CISCRIP. She also serves as a research advocate for NCI, and works one-on-one with patients to help them navigate their treatment options within and outside of NIH.
Jamie was diagnosed stage I in January 2007, during which time a wide excision and a sentinel lymph node biopsy showed that the cancer had not spread. In December 2009, she experienced a recurrence in the deep tissue near her primary tumor, but a PET scan and clear margins indicated the cancer was again contained. After consulting numerous key opinion leaders, it was determined that the best course of action was to wait and see. In January 2010 (one month later), Jamie became pregnant with her son, Kai. Two weeks before she was supposed to return to work from maternity leave, her oncologist suggested a follow-up PET scan. The scan revealed tumors in her liver and her pancreas. Her son was 12 weeks old. After quick, furious, and abundant research, Jamie and her husband, Jeff, decided that the best course of action was to join a clinical trial at the National Cancer Institute. That decision saved her life. Jamie enrolled in NCI’s TIL trial. From January through April 2011, while waiting for her new cells to grow as part of the treatment, Jamie received high-dose IL-2 as a stand-alone treatment. The IL-2 shrank the tumors in her liver and pancreas, but August scans showed 35 new subcutaneous tumors throughout her body. In September 2011, Jamie received NCI’s TIL treatment. The treatment has been working progressively over the past 2+ years and Jamie’s most recent scans, October and February 2014, both showed no evidence of disease. Jamie, Jeff, and Kai recently celebrated Kai’s 3rd birthday, and, because of NCI’s groundbreaking research, they are confident that they will be celebrating together for many years to come.
I was diagnosed with melanoma, at age 25, while pregnant.
Prior to this time I knew almost nothing about melanoma. I had lost a colleague, almost a year prior to melanoma; he was 28 and the father of a young child. While that tragedy was something I experienced from the sidelines, it was still removed from my reality. Like most people, I had grossly underestimated skin cancer and its potential to impact my life.
It was my husband, Adam, who brought the suspicious looking mole to my attention. One day when rubbing my back, to ease my pregnancy pains, Adam mentioned that I had a mole on my lower back that “just didn't look right." As far as I knew it had been there forever, so I brushed him off. Adam attended my next baby check up and he was the one that asked the doctor to look at the mole. My OBGYN took one look and said I needed to see a dermatologist. I remember being briefly nervous and asking, "You don't think its cancer…do you?".
I saw a dermatologist for the first time in my life a week later. He didn’t have much to say as he removed the mole and sent it off for a biopsy. Overall I was calm as I waited for results. In my mind it was outside the realm of possibility that I could have cancer. I felt invincible: I was young, fit, and pregnant. I was convinced this ordeal would soon be revealed as just "precautionary measures."
December 29th, 2011, is a day I'll never forget! About 3:30 that afternoon, my phone rang. It was my dermatologist. The conversation that transpired the next few minutes was life altering. I learned that the mole on my back was, in fact, melanoma. It was still within stage one but had started its way down into my body and was no longer just on the top layer of my skin; it was .75mm deep.
In those first minutes so much went through my mind. My most vivid memory of that experience is lying down on the floor, propping my feet up, and wondering if I would ever see our unborn child go to preschool. My mortality was thrown into my face, and it was scary. I thought of the precious life growing in my belly and knew I had so much to live for, that my baby deserved a mommy. I was flooded with panic, fear, and anxiety all at once—my world completely stopped.
My doctor explained I was going to need a swift and aggressive surgery—but if that went well I would require no other treatments. Six days after my diagnosis, I had a wide excision surgery performed in the hospital, so staff could monitor my unborn baby while simultaneously monitoring me. The surgery was very painful and the situation was so overwhelming. About a week after surgery I got the amazing news that all the tissue removed came back clear of melanoma! I cried tears of relief but still didn’t feel free.
The reality of the diagnosis is something I still live with and will live with the rest of my life. Every week I perform skin checks on myself and have had multiple suspicious looking moles removed, one of which was pre-cancerous. Now, more than ever, I am an active participant in my continued skin health. The key to beating melanoma is staying one step ahead of this nasty cancer.
Reflecting on my colleague's early death and my melanoma journey, I am reminded how many of us don’t appreciate the everyday behaviors that put us at risk. Until melanoma affected me personally I had no clue. For example, had I known the true dangers, I would not have cared about having a perfect tan for prom. I would have skipped the tanning bed! Had I known melanoma was much more than “just skin cancer” I would have never left the house without sunscreen!
Education and awareness are critical for us to beat melanoma—as individuals and as a community. Continued research into better treatments, like the projects supported by the Melanoma Research Alliance, is necessary so patients diagnosed with later-stage melanoma have more options and a better chance of beating the disease. The Melanoma Research Alliance is also an incredible source of support and information for survivors, like me.
People need to hear loud and clear that melanoma is not just skin cancer—it is an aggressive, unpredictable, and dangerous cancer—and it can affect any one of us. Those of us blessed enough to survive this diagnosis must tell our stories, so that others grasp the seriousness of this disease.
In August of 2012, I walked into the ER with a spiking fever - and didn't leave for over two weeks. I had a recurrence of an early-stage melanoma that was removed twelve years prior, and this time, the prognosis was much more dire.
Tumors were in both lungs, my liver, spleen, and abdomen – all from the original cancer that stayed dormant for so long. I had lost enough blood to be anemic, and during that hospital stay I dropped over 30 lbs. The future looked awfully bleak, but I was lucky to have a strong support system that helped guide me toward the cutting edge treatment offered by clinical trials.
Four surgeries and two trials later, my tumors are a third of their original size and continue to shrink. The first oncologist in 2012 told us he would be surprised if I were here in two years. That may have been statistically correct, but there was no way I was taking that as a pre-ordained sentence. We had just had a baby boy the month before, to go along with his then-two-year-old sister. Receiving that prognosis at face value and taking existing standard of care (and their accompanying dismal survival rates) was flat-out unacceptable. I had a family who needed me to be in their lives for a long time to come; two children to guide through adolescence and a loving wife who needs a partner in that journey. Resignation to a short remaining life span was just NOT happening.
Fortunately, I got melanoma at the "best" time, if there is such a thing. My clinical trials have both been immunotherapy-based, and would not have been options had my diagnosis occurred a few years earlier. The enormous strides made in melanoma research in the last ten years have made goals of “see my kids off to college” and “watch my children get married” go from unrealistic pipe dreams to cautiously optimistic reality. Breakthrough therapies have extended my life so far, and with the support of the Melanoma Research Alliance and other benefactors, the melanoma research community will continue to make enormous leaps in treatment options, disease regression, and ultimately lives saved.
I have been blessed on many occasions during this battle, starting from the initial diagnosis in 2000 that was caught early and mostly by accident. Being able to voice my ups and downs – which every cancer patient has – via a national blog is an outlet for my emotional journey, but also helps connect with those patients walking a similar path. Giving back and inspiring others to stay positive, focused, and determined as they face their own cancer battles adds another layer of purpose to my personal crusade of beating melanoma.
T.J. Sharpe writes the http://www.philly.com/patient1/ blog about his ongoing battle with Stage IV Melanoma and his experiences participating in clinical trials.
I was 24 when I first noticed a “mark” on my breast. Living a busy life focused mainly on my career, I didn’t even think twice about my health. I felt fine. I didn’t even call it a mole at first because it was just a dot and it had just recently appeared. It was a small dark dot. Almost like the tip of a black Sharpie marker.
A few months later, I noticed it again. It was a larger dark dot that now had a brownish rim around it. The dark center had a faded brown rim with uneven edges that almost looked smeared. At this point, it was the size of a pencil eraser. I wasn’t nervous about it, just casually noticed it and showed a friend. I didn’t want to overreact about it, but at the same time, I knew that “dot” that turned into a growing, darker mole, had not been there before.
That gut feeling is what ended up saving my life. I was completely uninformed when it came to skin cancer; I didn’t even know what melanoma was or how serious it is. I knew enough about skin cancer to know that it was a red flag to have a mole that is changing, which is the only reason I ended up addressing the mole with my doctor. I didn’t even have a dermatologist. I waited for my yearly appointment with the gynecologist to roll around and asked her if she thought it was something to worry about. Her reaction was intense. She told me to find a dermatologist that day and tell them my doctor says I need to be seen immediately. She knew the mole needed to be biopsied immediately.
I didn’t get an appointment with a dermatologist for another three months. Not knowing what I was facing, the wait didn't even faze me. Looking back, I would have demanded to be seen sooner or found another doctor. (For anyone reading this who is questioning a mole … PLEASE DO NOT WAIT! I wasn’t educated enough to know I was allowing the cancer time to spread.)
When I was finally seen, I was surprised to have three moles removed for biopsy. Aside from the mole I had noticed, there were two more pre-cancerous moles living on me. One was on my back, the second on my other breast. The suspicious mole that brought me there to begin with ended up being melanoma. I waited weeks to hear the results, still not really afraid or worried. I had no idea how serious my life was about to get. I really thought I would receive a phone call that would say “You’re all good, have a great day!”
I work in radio, so when my dermatologist called, I was on the air and I couldn’t talk. I wasn’t expecting him to say anything bad, so I asked him to call back in an hour. That’s when my life changed. He told me that a team of experts reviewed my case and diagnosed me with melanoma. He had consulted many professionals because he was surprised by his findings. I was 24 and in perfect health. I didn’t worship the sun. I never spent much time outdoors. I had used a tanning bed a few times in my life, but never regularly. (Looking back, I would never have entered one EVER if I knew the fear I would be feeling right this very moment.)
The doctor said I required another surgery immediately. My eyes filled with tears, but to be completely honest... I still wasn’t really sure what melanoma was. He said my oncologist would be calling in the morning to schedule the surgery because they feared that the cancer may have already begun to spread to my lymph nodes. That word is what made me realize this was serious. I thought, “Wait, I need an oncologist? Isn’t that a cancer doctor?” To those who are under the impression that it’s “just skin cancer, they can just scrape it off,” that is very far from reality and that has become a statement that will throw me right into sun safety preach-mode.
The surgery was painful. I am sharing these details with hopes that it will reach someone and change the way they think about their time spent in the sun. I don’t wish this experience on anyone, but I am grateful to have caught it in time to warn others.
Telling this story now loses some intensity because it lacks the time spent worrying in between appointments. The waiting was the worst part. There are weeks in between biopsies that you have absolutely no idea what you’re facing. All you can do is wonder. Is it that bad? Am I catching it in time? Will I have a chance to fight it? While recovering at home and waiting for the results from this surgery, I daydreamed about my future with my then boyfriend, now husband. I wondered if we’d even have a chance to live the life we dreamed of together. My mom was also wonderfully supportive through all of this (especially the waiting) and often reminded me not to worry until there was something to worry about.
I was blessed with a chance to tell you what I went through because, thankfully, we caught it just in time. I essentially caught this myself. Melanoma is the fastest spreading skin cancer, and the deadliest. It spreads so fast that waiting to get something checked out can cost you your life.
Since my initial surgeries, I have had a few scares. For the past year or so, I have had MRI’s done on my brain regularly because there was fear that the melanoma had spread there. I’ve had many other suspicious marks/moles removed, including one from a very private place that NEVER sees sun. I also found this myself. It was another frightening reminder that this is going to be a never ending battle with the sun and with my own paranoia and fear of not catching it in time, next time. My current struggle is with trying to find a balance between awareness and living in a constant state of fear.
One thing I try to stress to my friends and family is that you have to be your own finder. Your doctor doesn't see you enough to notice small moles that may change. Know your body, know when it’s changing, and speak up when something doesn’t look right! You could save your own life. I do a monthly skin check to take note of what moles already exist and what they look like. Taking pictures helps. If you start to worry something is changing, measure it.
Melanoma has also changed everything about the way I spend time outdoors. I don’t just hang out outdoors. I go out and live a normal social life, but I take extra steps to make sure I’m prepared to protect myself. I use sunscreen like a regular moisturizer. I wear sunglasses daily. I wear hats regularly. I cover up.
Know your body, notice changes, seeing a doctor early enough can be your life saver.
I had noticed an unusual mole on my shoulder for more than a year. While it did not change dramatically, it would sometimes bleed, and I thought I should probably have it checked. When I did, I learned that I had Stage IV melanoma, and that I would likely die in less than five years. It was the fall of 2006, and as I looked for help I realized that there was not much I could do – there weren’t many options, and the odds of those available seemed daunting. I started with surgery, removing tumors and lymph nodes, and moved on to a clinical trial from which I was disqualified after a new tumor was found in my neck. As time went on and the cancer spread, I underwent radiation, aggressive chemical treatments, and many surgeries. My hope dimmed as the cancer appeared in my brain, and repeated gamma knife and open brain surgeries seemed unable to stem the cancer’s recurrence, and I began to have seizures.
Around the time I learned that I was sick, I had a horse that I loved, named Sonic Charm, who also became very sick, and I was told that he wouldn’t live. I was coming to the place where I couldn’t care for him much longer, but I did. He got well, and I remember the rainy day when I watched with my friends – who knew I was sick and knew that I loved this horse – as he thundered down the stretch from behind to win by many lengths.
Last summer, my tumors were taking over, and my very good doctors told me that there was not much else to do. But I didn’t give up quite yet. I let my friends guide me, and they knew about the Melanoma Research Alliance (MRA), and knew that things were changing all the time as cutting-edge research was being developed. With the help and guidance of the MRA and many friends, I found my way to Memorial Sloan Kettering Cancer Center, which, like a number of amazing research hospitals, simply does not give up. To skeptical me, they said “let’s get busy” and put me in an immunotherapy trial. Within weeks I felt the tumors receding, and not long after, it was hard to find the lesions that had bulged out of my body. I now have an overwhelming reduction in my cancer. I’m grateful, and at the same time hopeful that people will support the kind of research that has brought my story to where it is right now.
In 1992, I felt the healthiest I had ever been. I led an active lifestyle and even ran the Marine Corps Marathon in Washington, DC. Five months after crossing the finish line, I was diagnosed with melanoma. It was the start of a new marathon I never hoped to enter: The fight against cancer.
Friends and family helped me discover my melanoma and urged me to see a specialist. During a family vacation in Florida, my sister-in-law Ellen noticed a weird red dot on my chest that had become raised and told me I should see a doctor. When I returned home to Ohio after the trip, a business associate echoed her advice, so I visited the doctor and had the spot removed and biopsied. Right after returning from a ski trip out West and still feeling great, I received the diagnosis of malignant melanoma.
I started making my treatment plan and underwent surgery. My sister, Sally, who lived in DC, happened to talk with Dr. Sigal from the organization Friends of Cancer Research who recommended the Duke University Medical Center’s melanoma treatment program. While I’d heard about Duke’s basketball legacy, I had never known about their cancer research activities. Hoping their medical center was in league with their basketball program, I flew down to their facility and met with Dr. Seigler, Professor of Surgery and Immunology.
The meeting changed the course of my treatment—and my life. I started on an immunotherapy regime administered by Dr. Seigler. After seven months of treatment, I had no evidence of the disease, and entered “Wait and see” mode. Two decades later, I remain free of cancer, but it’s changed my life in many ways.
I became involved with Duke’s Melanoma Consortium, and now serve as its Chairman. My experience promoting Duke University Medical Center’s melanoma research programs and studying similar programs around the world has given me insight into the business of cancer research. After reading a Fortune magazine article on Debra and Leon Black’s creation of the Melanoma Research Alliance (MRA), I asked The Blacks how I could help.
MRA plays an important role in the melanoma ecosystem, making connections that individual patients cannot. MRA ties all of the best melanoma research together using a disciplined, scientifically-focused methodology. In 2013, my family sponsored an exciting MRA Young Investigator Award that connected MRA’s resources with Duke’s research program.
Sometimes, I get calls from newly-diagnosed melanoma patients seeking hope and the reassurance that this cancer can be overcome. I share my personal story and highlight the cutting-edge melanoma research that’s in progress. I also tell them to think of their battle with melanoma like running a marathon: The focus and discipline it takes to get through a marathon are helpful in the fight against cancer. Of the fifty things running through your mind when you are diagnosed, you have to stay focused on how you are going to get through the race, even if you never thought you’d be running in it. Twenty-one years later, I’m still running.
Melanoma should be the last thing on the mind of a twenty year-old college junior, especially toward the end of the fall semester. But it was the only thing on my mind…
In the summer of 2003, my mother noticed a black raised mole on my lower back while I was swimming at my family’s pool. I have pretty fair skin and had always had several atypical moles on my back, so it didn’t seem that out of the ordinary. My dermatologist removed the mole and sent it away for biopsy. As it turns out, the biopsy came back labeled “severely atypical mole that may or may not be melanoma.” While this was a more favorable diagnosis than conclusive melanoma, it was not very reassuring—they planned to treat it as if it was melanoma.
I now have a scar halfway across my back. They removed quite a bit of area and determined that they “got it all.” In the few years that followed, I had blood tests and chest x-rays every year, along with 2-3 full body skin exams. The anxiety was tremendous and I found myself thinking, “Was it melanoma in the first place?” “What if it was melanoma and had spread?” “What if it comes back as something worse?”
Candidly, I never really knew what melanoma was. I thought it was just skin cancer and that people didn’t die from skin cancer. As I researched this deadly, vicious and aggressive disease, I began to get panic attacks from hearing the stories. I was alarmed by the many young adults dying from melanoma every year. This cancer is simply killing at an alarming frequency in the 20-40 young adult age demographic. I have not known of anyone in the aforementioned bracket who has died from any cancer other than melanoma. A colleague aged 31 with a wife and two kids; a college classmate aged 29 with her whole life in front of her; another colleague aged 50… and these are just the folks I’ve known personally.
I was lucky that my situation was just a dust-up with melanoma, but others are not so lucky. That is why I dedicate almost all of my philanthropic endeavors to melanoma research and melanoma-related organizations. It may sound corny, but I feel that I was given a glimpse into the horror that is melanoma for a reason. Outside of my family responsibilities, “the death of melanoma” has become my raison d’être, and I grow more and more optimistic with every passing day. Why, one may ask? The answer I give is simple: The Melanoma Research Alliance (MRA). This truly wonderful organization has been at the forefront and contributed significantly to the recent advancements in the melanoma space. With the generous support of founders Debra and Leon Black, the MRA donates all publicly-raised funds directly to research. Simply put, this group has saved lives and will continue to be at the forefront in the death of melanoma, and I’m extremely proud to stand with them in this great challenge.
In addition to funding research work, MRA is also a strong advocate for sun safety. Broad Spectrum SPF products of 30 or greater should be used by everyone, especially during peak sun hours, and I mean everyone…Bob Marley died from melanoma for god’s sake. My wife, my son, and I are all fair skinned. Some say we’re translucent! That’s ok though (I’m told the “vampire look” is in right now!). Plus, we won’t have to worry as much about looking like the Marlboro Man or wrinkled prunes as we age.
Just before I turned 30, I noticed a dark freckle on my backside that I hadn’t recalled seeing previously. I shrugged it off initially because it was in a location that doesn’t see the sun, and because I was young and healthy.
Several months later, my father told the family that he’d gone for a routine body scan at his dermatologist’s and had what turned out to be melanoma removed. Because it’s hereditary, he wanted to let my brother and I know that we, too, should be getting checked.
My dad’s warning made me re-evaluate the mark, which seemed to be getting bigger by now. It was also only six weeks before I was moving to London. My father insisted I get the spot in question looked at before I departed.
I still didn’t think I could have melanoma, but I went to the dermatologist’s office and made sure to point out the mark. My doctor agreed that it needed to come off, but figured that would be the end of it. It wasn’t. Two weeks before I would be getting on a plane I got a call that my biopsy came back and I had melanoma. The doctor referred me to a subcutaneous oncologist who had to remove more of the tissue around the area to get a clean margin.
What was smaller than the head of pencil eraser is now a four-inch thick scar and a reminder that early detection is crucial.
My story doesn’t end there, however. In London I went for body scans in six-month increments, which is what National Health Service deems appropriate, compared with the three-month checks my dermatologist had recommended.
When I moved back to the States, I happened to notice a dark spot on my tricep that I hadn’t recalled seeing previously. Given my history I didn’t hesitate to make an appointment with my dermatologist. It turned out to be melanoma also. Once again, I was back under the knife to get a clean margin and another 3.5 inch scar.
I still go every three to four months for check-ups. I’ve had a dozen moles removed that have turned out to be nothing, and I wear SPF every day, even in the winter. I can’t undo the years as a kid that I tanned outside or alter the genetic composition that might make me more susceptible to this disease, so I tell my story and urge friends and family to be proactive and get checked. Awareness and early detection are essential. And someday, I hope there may be a cure.
To this day, I despise putting on sunscreen. It’s greasy and makes me break out. I’m now paying for this aversion, dearly.
I’ve always cared about my appearance and like many young women (and men) thought I looked great with tanned skin. I still do! I had a great time over the years: “lying out” with high school friends over long summer days (the best rays are between 10 am and 2pm); snorkeling trips to St. John; an occasional tanning bed stint before a college sorority formal. I wore sunscreen here and there as, I generally tanned well given my olive skin. It was likely some coconut smelling oil with SPF 3 that sat alongside my Sun In. I don’t think I ever went as far as the tin foil reflector. I was sure to wear [only] spf 15 on my Caribbean snorkeling trips and maybe reapplied it once a day. And who wears sunscreen at the tanning salon?
Since I graduated from college, I have had over 25 suspicious moles removed. It was only a matter of time before one would come back positive for melanoma. During my pregnancy with my second child, I noticed a significant increase in the number and size of the moles all over my body. I went for my biannual check-in with my dermatologist and got a call that one of the biopsies that he had taken needed further attention. I’m sure he said “melanoma,” but it was thrown in with all the other dermatological jargon. It was all kind of a blur, but in all honesty, it didn’t seem that dire to me. Maybe it was how I chose to take the news. The margins were taken immediately with no further procedures needed.
It is only since the melanoma that the seriousness of it all has taken hold. Maybe I’ve just grown up. I have had 10+ [outpatient] surgeries to remove margins on other irregular or dysplastic moles. My body is a mess. I want nothing more than a tan to help mask the scars and divots on my skin, but I have a family to think of and I want to be around as long as I can.
I’m on a crusade to change our addiction to the tan. Starting with my children. It is my duty to slather them with sunscreen, kicking and screaming, until they have children of their own. Next is you…
I had just turned 30 years old when I found a strange little pink lump on the left side of my neck. I made an appointment with my dermatologist to have it checked. I have always had bi-annual skin checks, but this looked and felt different. I wasn’t worried it was cancer – I assumed it was likely a cyst of some sort, which could easily be removed.
At first, I was told it was likely nothing, and that I shouldn’t worry. My dermatologist gave me some topical cream to get rid of the “cyst’. After a couple months I had started to grow concerned – the lump was larger and was hurting a lot. After multiple visits of being told it was nothing, I finally called and explained to the dermatologist’s office what was going on, and asked that the lump be removed. They agreed to do so, and the lump was removed and sent for biopsy. A few days later, I received a call from one of the dermatologists in the practice who told me that the pathologist needed several opinions because it was an unusual case. I was told that my pathology report now indicated the following diagnosis: a malignant spindle cell neoplasm with a differential of desmoplastic neurotropic malignant melanoma greater than 4mm or a malignant peripheral nerve sheath tumor, which extends to the lateral and deep margins. This, I was told, was a very rare type of malignant melanoma – one that is actually not caused by the sun, one that shows up deep in the tissue and grows rapidly but locally, and one that does not portray as a regular ABCD Melanoma.
I was in shock… I had never been told I might possibly have cancer. But first things first, I knew I had to find the best oncological surgeon I could and have it removed. I immediately found a great surgeon and oncologist at NYU Medical Center, and they proceeded to set me up for surgery. I had the surgery, then was told 5 days later that they had not gotten clear margins, and they would have to go back in ASAP. I was devastated – especially since so much skin and tissue had already been cut out of my neck – what would a 3rd surgery do??? And would they get all then cancer this time? I found another incredible NYU doctor who was both an oncological and plastic surgeon, and he worked wonders. He not only removed the remaining cancer, he combined the previous scars into one, and tucked it all into my neck and behind my ear so it would not be as visible.
After a long recovery, many weeks of painful and traumatic radiation, and several months of an experimental vaccine treatment (which gave me 105 degree fevers and made me sicker than I had ever been in my whole life)… I was ready to start life again. A year after I had been diagnosed, I began seeing my oncologist less frequently, and having scans every 6 months. 5 uneventful years went by, (well, uneventful with my health, but eventful in my personal life - i met my incredible HUSBAND!) and at my 5 year mark my new husband, my family, and I celebrated – after all, 5 years is a BIG deal in the cancer world. If you reach that point, you are as good as golden.
3 months after my 5 year celebration, I had a routine six month scan. I went to see the oncologist not expecting anything but a pat on the back and ‘see you in 6 months’. Instead, I was told my Stage 2D melanoma had metastasized to my lung, and I now had 4th stage melanoma. I was in shock and heartbroken. I immediately found a lung surgeon, who went in and removed the cancerous nodule. He was able to get it all out by surgery, and afterwards I was considered to be NED (no evidence of disease). I had a very tough recovery from the lung surgery, and my husband and I had to drastically change our life plan (we were ready to have kids, but that would not be in the cards right now). I would have to be scanned every 3 months, then after a year or so, every 6 months, and this would go on forever. I was a 4th stage cancer survivor – a rare phenomenon, so it seemed.
I am now one and a half years cancer free… my life has not gone on as I had thought it would - but it HAS gone on. My husband and I do not yet have children, but hopefully we will soon through modern science and IVF. My life is a constant, daily emotional (and often physical) battle for me, and I don’t think that will ever change. But I do have faith and hope that I can go at least another 5 years cancer-free – and hopefully more!! I have a very supportive, kind and loving husband, as well as a great family, who all stand by me through it all. I cannot imagine doing this alone. Each day is a new day, and those of us who have been through this unimaginable ordeal must always remember this and believe in the amazing leaps in science and the wonderful doctors who fight for us always.
I can only hope that the wonderful people at MRA (and other Research Foundations) come up with a cure before the cancer comes back to haunt me again. MRA’s dedication and devotion to this cause is unwavering and extraordinary. Those of us who have battled all stages of melanoma are blessed to have MRA on our side.
In July, I went to my annual dermatologist’s appointment to have my entire – and I mean ENTIRE body checked for cancerous moles. This means once a year, I put on a paper hospital gown, and my dermatologist dons magnifying goggles and examines every mole I have.
Each time, I wonder if I’ll get through the exam without having a mole removed. For most people, having a mole removed causes little stress, but for me, it creates a paranoid frenzy in my brain that lasts for days. I’ve had four removed since 2005, and three of those have been cancerous or abnormal, which means they require an additional surgery. The nurse calls you within a few days if the results are bad but waits about two weeks if the results are good. Also, they’ll only leave a message if you had good results, and if you don’t receive that, you call them back, hands shaking, blood pounding in your ears, minutes seeming like hours, wondering why don’t they just tell me already!!! and hoping it’s not truly melanoma, but knowing regardless you’re going to have another surgery, pain and a brand-new scar.
This time they biopsied a mole on my upper back, and three days later, I saw the dermatologist’s number on my phone while I was on my work line. Then a voicemail to call them back for the results. “Moderately abnormal," the nurse said, and with that she scheduled a surgery for a week later with their staff plastic surgeon.
Here we go again. Wide excision number three. “Wide excision” means they remove all layers of skin (this time, an oval about an inch and a half long) down to the muscle to make sure the abnormal cells haven’t spread, and then they sew it together. The plastic surgeon who has performed my last two surgeries is, unfortunately, quite blunt. In the few minutes before both of them he has said, “Sorry, this is going to hurt like hell.” And he’s right.
They still biopsy the skin they remove on the wide excision, so once again, you’re waiting for test results, hoping you won’t find out they have to go back in on a fresh wound and take more skin, or worse, lymph nodes.
In 2005, I had a melanoma in the earliest stage removed from my left thigh, when I had a 3-inch-wide excision that made walking difficult for days. In 2010, I had a small wide excision on my right palm, an area where more nerves are concentrated than in other parts of your body, and I wasn’t sure if I’d ever have full range of motion in my hand again. And in 2012, I added this 1.5-inch scar on my upper back, one that can be seen when I wear most dresses in my closet. Just because I didn’t have lymph nodes removed, chemotherapy or radiation doesn’t mean that I didn’t have cancer, and moreover, that I’m not constantly dealing with the aftershocks from it. I’ll have this forever – the fear, the guilt, the pain, both physical and emotional. It comes when I’m out in the sun, something I avoid as much as I can but can’t help to want to be a part of when there’s a beach or friends or margaritas involved. It comes on the rare occasion when I am sitting by the pool but see someone’s gaze fall on the 3-inch purple scar on my thigh – or I just think they’re looking at it. It comes when I hear a 40-year-old colleague brag about how often he is in the tanning bed. It comes when I feel silly about having to take “shade breaks” alone. It comes when a tan friend insists on using something with SPF 4 and lies out in the sun for hours – and then tells you about it.
Melanoma and abnormal moles are a lonely road. Other illnesses, surgeries and grief-stricken moments – family deaths, miscarriages, job losses, divorces – warrant friends, family, acquaintances and even complete strangers asking how you’re doing, checking on you, changing their bad habits, reminding themselves to be thankful for what they have. But why doesn’t skin cancer?
This is the part I have a hard time with. Why doesn’t anyone care about melanoma? Is it because they think those affected are just having a mole removed and they go on with their day? Because they’re confusing it with less deadly skin cancers, such as squamous cell carcinoma and basal cell carcinoma (which still kill 3,000 per year)? Because it seems like there’s no lasting effects? Because it makes them uncomfortable to think about staying out of the sun? Because they’re tired of hearing people like me talk about it? Because you can catch it early? Because they think it won’t kill you?
It does. One American dies every hour from melanoma. I realize mine was caught early, but sometimes, thinking about all I would have missed out on – my wedding, my marriage, my son, because I might not be here now if it hadn’t been caught – is almost too much to bear. I think my son has my skin color – and it terrifies me. Is he going to hate me for how I make him stay out of the sun?
In 2006, some college friends and I got together for the first time since our sophomore year. When I mentioned while we were catching up that I had melanoma the year before, one girl said, “Jaime, it’s not like you had lung cancer. It’s not like it will kill you,” and changed the subject. Yes, her statement was insensitive, but this kind of thinking seems to be everywhere about melanoma. People constantly try to make me feel like my cancer wasn’t “real cancer” or that it isn’t a big deal because it was caught early.
This surgery didn’t hurt as much but almost made me sick a few times because it was so close to my senses – nose, eyes, ears. Lying on my stomach, I had to face the doctor’s surgical side table during, and I saw my own blood on everything – gauze, the surgeon’s gloved fingers, sharp metal tools. I smelled the sickeningly metallic combination of Betadine and blood mixed together. At one point, I heard scritch, scritch, scritch as the surgeon cut my own skin with scissors, and even though I couldn’t feel it, I was horrified at the sound. While he sewed me up, he braced one hand on my back and used some force to pull the stitches taut, at least 10 times. I lost count. I just wanted it to be over. And this is the third one in seven years. I feel like I'm usually strong, but right now, I am just over it - the exams, the biopsies, the fear, the surgeries, the scars.
I’m not trying to be dramatic or elicit sympathy in talking about it; I’m talking about it because it’s such a constant part of my life, and it may be a big part in the life of someone you know. Really, I’m just asking for understanding. If someone you know has skin cancer, express concern and support, stay in touch and don’t dismiss their fears with comments like, “At least you caught it early!” and “You’re going to be fine.” Listen more. Give less advice. Skin cancer may be the most common cancer, but it’s still uncommonly painful to those affected by it, especially when someone dismisses it.
In November 2007, an optometrist noticed a "freckle" in my eye during a routine eye exam. He referred me to a retina specialist for a more thorough examination.
During my first visit to the retina specialist, the doctors and technicians ran a series of tests. They asked me to come back to see their tumor specialist. At this point I didn't know it was possible to have cancer in the eye and was sure there was no reason to be alarmed.
I returned to see their tumor specialist less than a week later. At the end of the appointment, the tumor specialist told me, "We think this is melanoma, and we think we might be able to treat this without ruining your vision."
My heart sunk into my stomach. I was 24 years old and in great health.
I wanted a second opinion, so a few weeks later, I received another thorough examination with the Shields, a husband and wife team at the Wills Eye Hospital in Philadelphia. The tumor was very small but did have many characteristics of melanoma. I decided that I would opt for their recommended course of treatment, radiation plaque therapy.
Three days later I was admitted to the hospital to have the radiation plaque sewn onto the back of my eye. I was in the hospital for four days while the radiation killed the tumor. On the fourth day, the plaque was removed and I was able to return home to recover.
The Shields also recommended a biopsy of the tumor in order to conduct genetic testing. Four months later, I found out that my genetic test indicated that not only was my tumor indeed melanoma, but also it was likely developing into the more aggressive form.
The tumor is located in the chorodial layer of the retina so it cannot be removed. The radiation was used to kill the tumor, and follow-up laser treatments were done in the first year to assure there was no regrowth. However, the radiation also killed healthy blood vessels in my eye, which has caused a lack of blood flow, impairing my vision. The scar from the tumor also creates a blind spot. I lost the lower peripheral vision in the left eye as well as some loss of central vision as a result of the radiation.
Ocular melanoma is very rare. Statistically, it only affects 6 in one million people and generally affects people starting in their 60s. It is rarely found in young people.
It has now been just over three years since I was initially diagnosed. Fortunately the tumor in my eye is completely dead, and all of my blood work and scans have been normal. I now regularly see a dermatologist, oncologist, retina specialist, and Dr. Shields.
After this experience, I was motivated to do something different with my life. I decided to pursue a law degree with a focus on health in order to advocate for cancer patients through health policy.
In May 2008 I went in to have a tiny, dark, dot on the bottom on my right foot removed. Somewhere in the back of my mind, I remembered hearing that if you have a freckle on the bottom of your foot; it's not a good thing. I went in, had it taken off, and was told to have a good weekend. The next week I got a phone call from a nurse, my path report came back and it was melanoma.
I remember the nurse talking on about how I was now going to see a surgical oncologist rather than my dermatologist, the appointment had already been made, and I was to report to the cancer hospital for chest x-rays and blood work. I sunk into the deepest fear… This was my new life, changed forever. Most of what came next was a blur, except for my first meeting with my surgical oncologist.
I was still under the impression that skin cancer was just of the skin. My thinking was, "cut it out and let me be done with this!" But my oncologist set me straight. I'll never forget the moment he raised his voice and said, "This is serious!" Melanoma is serious! I went on to have my surgery- wide excision and lymph node removal. To my relief, my Lymph node path report came back clean.
I have been practicing safe sun ever since: seeking shade, sunscreen always, UPF clothing, hats, and dermatology appointments ever six weeks for full body checks. In September 2011, a second melanoma was found on my right forearm. This one was in situ, so no lymph node testing. But again, I sank into the depths of fear. This time around, I decided to do something different with this new life of mine. I'm taking my education background and my experience with the disease and spreading the word on sun safety to teens. Out of this terrible cancer of mine was born a very important passion! Even in the worst situations, there are blessings! That is how Respect the Rays came into fruition.
My story used to end there, until May 2012, when I saw a minuscule dot in my left eye. Needless to say, I was at in my eye doctor’s office the next day to check this out. I was told it was pigmented cells and that it was normal, but because I was so anxious, I could be refered to see an eye tumor specialist. After a few weeks wait to be seen by this specialist, I had a five-hour appointment, with various tests, pictures, etc. The last part of the appointment was with the specialist, and where a diagnosis is given. I was shocked to hear these words from the mouth of an eye tumor doctor, “Well, what you came in for is actually fine, but I found something else. It’s called Primary Acquired Melanosis, a possible pre-cancerous lesion. With your history of melanoma, I think we should biopsy the area.” August 2012 I had surgery to remove this lesion and to freeze the surrounding cells. As I write this, I await pathology results from this surgery. This disease is a life-long disease. I know this and I do everything I can do to stay on top of it. My hope is to use my experience, strength, and hope to better educate people about this disease.
I was 25 years old in March 2009 when I realized I needed to go in for my yearly skin check. There had been a small spot on my left ankle that was fairly new at my last visit but wasn't of any concern at the time. However, I had watched some changes occur and every time I looked at my ankle I somehow knew the spot just didn't look right.
During my appointment, the dermatologist told me he'd like to biopsy the spot. I was shocked, since he felt it was fine the year before.
The biopsy showed that it was melanoma. I was sitting there thinking, 'wait, isn't melanoma the cancer people get when they are around 70 or 80 years old?' Well, apparently not.
After several more appointments, I saw an oncology surgeon, Dr. Tyler, who examined my leg and was extremely positive. I had my first slight sense of relief. He felt as though my melanoma was still localized in the skin, and the chances of it already spreading were only 5 to 7 percent.
We left the appointment with a surgery set. I would have a wide excision of the area on my ankle to make sure all cancer cells were gone and would also have a lymph node biopsy done where they check for cancer cells in the lymph nodes.
On the day of the surgery I arrived at the hospital with butterflies in my stomach. I was given all the scary potentials as I signed all my consent forms.
After the surgery, my husband and mother came in to see me. They told me that everything had gone superb. I got to go home the next day.
A week or so later, I got the call that I wanted to get - the biopsy on my lymph node had come back completely clear. I was cancer free. For the first time in over a month, I could breathe.
I continued to allow my leg to heal, and around the 10-week mark, it finally felt normal again, and I could walk. The swelling was gone, and although I had an interesting scar, I was amazed at my body's ability to heal.
This entire experience changed my life forever. I now visit the dermatologist and my surgeon every three to six months. At every visit I get a blood test and an external lymph node check. Once a year I have a chest X-ray. This will be a part of my life forever. But these small inconveniences are well worth the chance to live and be cancer free.
I wear sunscreen every single day, and the days of lying out in the sun are long gone. But I am embracing my skin and don't take healthy skin for granted.
My life was saved by that first dermatology appointment. Go for your yearly skin checks. Protect your skin. You may save your very own life.
It was just a tiny brown freckle on my inner right thigh. Then, practically overnight, it became black and slightly raised. Had it been on my back or another less visible part of my body, I never would have known it was there. I had it removed in September 2010, the doctor optimistically saying, "It looks like nothing." But it was something: the biopsy came back positive for melanoma, stage III.
When I heard that word "cancer," I cried, then I became paralyzed with fear, then I sprang into action. I talked to other melanoma survivors in Los Angeles about surgeons and oncologists, and became a sponge in order to absorb as much information from credible sources as possible about this form of skin cancer.
I was in surgery four days after my diagnosis. Two surgeries were performed: one to remove the affected area of my thigh, and another to remove 22 lymph nodes nearby because a biopsy of the nodes showed evidence that the melanoma had spread (metastasized) there. A PET CT scan also separately detected possible thyroid cancer, and after a needle biopsy, I had to have my entire thyroid removed.
Right now, I am cancer-free. Vigilance is the key. My skin will be checked visually and my body PET-scanned every few months. I refuse to have a recurrence. It is not an option with me, so, in addition to proper medical care, I have improved my nutrition, not to mention my sleep and exercise regimens.
In January of 2011, after four months of medical leave, I decided to go public with this personal story on my show "Extra." I felt it was my responsibility. I was touched by the number of people who reached out to me with their own stories of hope and survival. Every one of them inspired me to keep awareness of this disease in the forefront.
I want anyone who will listen to heed these words:
Please get your skin checked by a dermatologist who knows skin cancer, and not just the head and torso. Have a full-body skin exam - a complete 'naked' check, if you will, by a medical expert.
I should have had that kind of check-up every year, and didn’t. Please, do it. It could save your life.
I was six months pregnant with my first child when I had my first melanoma at the age of 33. I happened to notice that a mole I'd had on my right shoulder had grown a bit - and darkened. Since I was in Aspen and not planning on coming to New York until the eighth month of my pregnancy, I decided to ignore it. I'd had a mole right next to it taken off a few years earlier and the results had been mild dysplasia so I assumed this mole was headed in the same direction.
Upon returning to New York I went to see my dermatologist, who took one look at it and cancelled his next appointment. By then I must admit the mole had grown and its shape was starting to look like a blooming flower. It was removed and mercifully came back with the "in situ" diagnosis. Looking back over my childhood, I can tell you that I got a very bad sunburn on the exact spot as my melanoma when I was about 13. I was in the Caribbean and ended up with a raised blister the day after being (too long!) in the sun. We didn't know then how dangerous the sun could be.
About a year after the initial melanoma I saw a spot on my right thigh that looked funny to me. It was a tiny mole, but it was darker in color than the rest of my moles and the edges looked suspiciously uneven to me. My dermatologist told me it was fine -- and too small to worry about, but after checking it myself with a loop at home, I bothered him about it until he agreed to take it off (probably more to get rid of me than out of worry). Thankfully it was "in situ" again, but melanoma nevertheless.
Since then I've had full-body checks twice a year and countless moles removed, all with varying degrees of abnormality. During my next two pregnancies I had many moles, which changed in color and texture but I had them removed right away -- usually with a diagnosis of dysplasia. My father, too, had a melanoma on his scalp removed which was stage 1 so perhaps it runs our family. We all need to learn how to reduce our risk of melanoma to protect ourselves and future generations.
As a life-long California beach addict, cooking my fair English-Irish skin to the right shade of golden brown was an endless quest. I loved the sun and any sport or activity that got me out in it… skin protection was never a thought. Each year, as soon as the weather warmed, I hit the surf or the pool and suffered through blistering sun burns as my skin tried to shield itself.
At the age of 17, I had a mole on my left arm that was black, cauliflower-shaped, itchy, and would occasionally bleed. As a high school senior my only concern was it was ugly and a distraction. I was looking forward to graduation, followed by my freshman year at UCLA, and was full of excitement and promise. My life was about to dramatically change after one routine visit to the doctor.
My family physician immediately diagnosed the mole as a melanoma and insisted it be removed immediately. My doctor discovered the discolored tissue went to the bone. Four other pathologists all agreed it was stage four malignant melanoma, and I was scheduled for surgery.
After consulting other cancer specialists, my surgeon agreed on aggressive surgery to further clear the area around the tumor. He would also excise the lymph nodes under my arm and chest since the cancer had metastasized to the nodes in my arm pit. I remember asking my surgeon at the time if there was any correlation between melanoma and my sun-worshipping. He said there was none. We are fortunate that science has come a long way since my first diagnosis.
Over the next few years I had several surgeries to remove tumors as they appeared. There was no other treatment for melanoma at that time. In the mean time I completed undergraduate and graduate degrees at UCLA, married and had two children, taught science for almost 30 years, and served as chair of several state commissions and boards.
Now as a grandmother of two, I’m still vigilant and keep a regular follow-up schedule with my dermatologist. But since 1960, so much has changed. There are many new treatments available now, and so much hope.
It looked like my 2007 was going to be great. I had just sold my fashion brand, Hollywould, and was staying on as Creative Director without the pressure of being the one writing the checks. I had a nice new apartment, an action-packed social life, and I was living between New York City and lovely Florence, Italy.
On January 6th, I went to see a new dermatologist, probably to inquire about some ridiculous beauty treatment I'd read about in the latest fashion magazine. I'd had a small spot on my right cheekbone that had worried me for a few years but since I'd been seen by another dermatologist only 3 months before who gruffly told me it was fine and that I just needed to "stop Googling skin cancer," I wasn't concerned.
The spot was about the size of a pencil eraser and the color of a café au lait. It had been perpetually dry and, in the last 6 months, a very small dark spot had formed in the center.
The minute my new dermatologist saw the spot he insisted on a biopsy. I agreed but never imagined something would come of it. A few days later the doctor called to tell me that the mole was diagnosed as malignant melanoma. They would need to biopsy it again to find out what stage of cancer the mole had progressed to.
I had no idea what any of this meant. I ended up asking many of the wrong people for advice, including my manicurist.
Between January and August of that year I underwent five facial surgeries. Every surgery was supposed to be the last, and then I'd get a call from the doctor telling me that once again, the margins of my melanoma were not yet clear.
By the time I had my final surgery in August of that year, I'd had a circular chunk of skin removed from my cheekbone with the diameter of a silver dollar. My little eraser-sized café au lait spot was thankfully melanoma in-situ (meaning the melanoma was close to the epidermis surface and had not yet entered the bloodstream), but the margins had extended far wider than the visible spot.
Needless to say, 2007 did not go as planned. From January to September, I lived with a bandage on my face and ended up with a scar on my right cheekbone that could land me a starring role in the Pirates of the Caribbean.
That said, there are three things I've learned from this experience:
Wear hats, they are chic. Wear SPF 15+. Wear long sleeves. Walk on the shady side of the street. Look for changing spots on your skin, and get checked by a dermatologist regularly.
Don't take advice from your manicurist. Instead, go straight to Memorial Sloan Kettering or your local skin cancer oncologist, and do whatever they tell you to do.
Be thankful for every day, and know that life is a privilege and a gift. The stories and scars you have may help someone else, so don't be afraid to expose them.
Holly Dunlap now lives in Malawi, Africa, where she runs the social enterprise 4MaCoHa (www.4macoha.com).
After a series of Botox shots, which were little leagues next to my tattoo, I might add, I was finito. I was getting up to get dressed when I had a quickie last question for sweet Dr. Cela, who was already walking out. "Do you mind just taking a quick peek at this mole?" I asked. "My other doctor said it was fine, but it keeps bleeding."
"How long has it been bleeding?" she asked, coming to check the spot on my right upper thigh.
"Oh, like on and off for over three years," I said blithely.
"Really?" she asked. "Your other doctor didn't want to biopsy it?"
"Well, no, I mean he saw it three times and he said it's benign and that it's in a highly trafficked area and that it may have been rubbed by a garment or something."
"Hmm. well, it looks totally benign, but if it's bleeding, I'd get rid of it!" she told the nurse to prep and then sliced it off. I didn't think about it again.
Then, a week later, in a deluge of biblical proportions, I was pushing Fletch in the stroller while holding a massive umbrella when my cell phone rang. It was my doctor with the pathology report. Not the nurse, but Dr. Cela herself. Uh-oh.
"Jill," she said in a grave tone, "I'm so sorry, but I'm afraid I'm calling with some very bad news." I stopped on the street, stunned, as my heart started pounding out of my chest like Roger Rabbit's. "You have melanoma. I was so shocked when I got the pathology report that I called back the lab to have them double-check the results, explaining you were a young mother, but they confirmed the findings. You need to get to Memorial Sloan-Kettering right away..." She went on and I morphed into robot mode, barely hearing a word but nodding and recording the number to call and what I needed to do. It wasn't until a half hour later, when I heard my parents' voices, that I burst into tears. Luckily my mom had volunteered at the hospital for 19 years and within hours of everyone scrambling I had an appointment for the next day.
My surgeon explained that they needed to take out the lymph nodes in my vagina to see if the cancer had spread, plus obviously take out the whole area around the tumor, which was placed at stage 2 because it was growing into my leg beneath the mole. I was slated to go under the knife four days later. I looked at the surgeon's associate and said, "So, like, what are the chances that, like...I die?"
He looked at his colleague then back at me, clearing his throat. "Fifteen percent."
I burst into tears.
"I said one-five, not five-oh!" he said, surprised at my weepiness.
"I know!" I said through my tears. "That's still bad! I have three kids! That's one in six point something!"
I froze. People around me went into action, sending flowers, notes, and chocolate, but I was in panic mode. I just couldn't imagine dealing with years of battling this crap of scans, blood tests, radical diet change (fourteen Sprites a week became one, and buh-bye to Britney Spearsian snack food, including a Cheeto-dust-free existence), and more vitamin horse pills a day than I have fingers and toes. As if I had time!
Four days later, I went in and was facing going under anesthesia for the first time in my life. I was freaked but knew people did this every day and it was no biggie. Before my surgery, I had to go for tests in nuclear medicine, where they injected a radioactive dye into the site and the nodes and I had to lie in a tube.
"Yes, totally still. You can't move or we have to start over."
"Okay, so, it's like 20 minutes?" I asked, recalling a thyroid scan I'd had years back.
"Nnnnno, it's 70," the nurse said.
"Seventy minutes?" I gasped. "Oh my god, I can't, I can't do it. I CAN'T LIE IN THERE FOR SEVENTY MINUTES!"
The nurse calmly explained they would sedate me and that that I'd be fine. I started breathing so heavily I feared I'd lapse into hyperventilation that would necessitate a brown paper bag, just like when I tried to show off in a camp color war minimarathon and collapsed in a red-faced wimpy mess.
I swallowed the pill and felt the beats of my heart speeding up rather than decelerating. I was shaking from the cold of the hospital creeping through my little gown and I thought I wouldn't have the strength to deal.
And then something happened. The door opened and in walked another patient for the same procedure. She was eight. I instantly felt so loserish for freaking when this precious child - a second-grader two years older than my oldest daughter - was facing the exact same thing. In that moment, my whole world changed. Of course I always knew there were sick kids, but when faced with my own mortality I spun into self-protection mode and never realized how lucky I was that it was me and not one of my three children. I thought about this cute girl's mother, sobbing there in the waiting room with tattered issues of National Geographic. I pictured it being me and how I would pray to switch places. So, see, my wish came true. It was me over my kids. And from then on, I never complained, never felt scared. Not even once.
Okay, except when I woke up and saw the eight-inch scar up my thigh. And that wasn't even the bad one - the vagina one was way more painful an area, as the groin holds tender nerves, but eventually the pain subsided. And now as I face my first bathing suit season, I'm okay with it. Actually, better than okay - I weirdly dig it. It's a jagged badge of honor that shows how lucky I am. And it's a reminder that I need to slather sunblock on my kids like I'm papier-mâchéing them in zinc. Can't be too careful! And can't be too grateful.
- Excerpted from the chapter, "Tumor Humor" in Sometimes I Feel Like a Nut by Jill Kargman
In March 2006, during a massage, I was told to
have a strange mole on my back examined. I went to a dermatologist, who
agreed the mole was suspicious and did a biopsy. The biopsy showed
melanoma, the most serious form of skin cancer. The mole needed to be
removed. The doctor told me the chances that the melanoma had spread
were very small and that I probably didn’t need any further tests. He
said to be on the safe side, though, he wanted to perform a sentinal
node biopsy when he removed the original legion.
A week later, my doctor called in great surprise to tell me that the
melanoma had spread to two of my lymph nodes and that I should have the
remaining lymph nodes removed to keep the melanoma from spreading even
more. He also discussed the possible medication I could take, including
the side effects, and the low probability that it would slow the
I went on to receive second, third, and fourth
opinions. At the end of each appointment, in shock, I would ask my
doctor if I had cancer. “Yes,” they would all answer. Thankfully, I
brought a couple of my friends to appointments for support and to help
me understand what was happening. Until then, I thought that removing
the mole would solve the problem. We scheduled the surgery for the
following Monday. I started to realize that the problem might be bigger
than I originally thought, and I needed all the support I could get. I
began the difficult process of telling my family about my cancer.
The next day my doctor called and said there
was a possibility a mistake was made when reading my slides. I couldn’t
believe it. He was sending the slides across the country to a top
pathologist who would make a decision within a week about whether or not
the cancer had spread. I was relieved but dreaded the long wait ahead.
After an agonizing week of worrying and
speaking to many doctors to receive a wide range of recommendations
about treatment options, I heard from the pathologist. He said that my
cancer had not spread, which meant that I did not have to have my lymph
I decided to get yet another opinion and that
doctor recommended I go ahead with the surgery. At this point, four
doctors from across the country had looked at my slides, and two of them
thought my cancer might have spread. The four doctors spoke and agreed,
to be on the safe side, that I should have the remaining 32 lymph nodes
removed from under my right arm. After removing the lymph nodes, I
learned that none of them showed traces of melanoma.
After the surgery, I received a variety of
opinions about what sort of treatment I should have, if any. I opted to
pursue treatment with an experimental vaccine. This entire process has
taught me the importance of being persistent in getting multiple
opinions, as well as the value of research to better prevent, diagnose,
and treat melanoma. I have had dermatology checkups every three months
for the last five years, and I continue to be very careful in the sun.
My experience with melanoma has been a roller coaster ride. Thankfully, I
recently passed the five-year mark of being cancer free.
Throughout my life, I have always tried to take care of my skin. I am not what one would call a 'sun worshiper.' I always use SPF 15, I have never set foot inside a tanning bed, and when I take long walks on the beach I always wear my funky wide brimmed hat. Although my back has always been a tricky place for me to reach, as I assume it is for most people, overall I thought I was being careful.
May 23rd, 2009 began just like any other day until a stranger named Jan approached me at the gym. Jan was extremely apologetic for invading my privacy but she had noticed a mole on my back in a place where, she (accurately) thought, might be out of my line of sight. She suggested I get the mole looked at by a dermatologist. I was unaware of the mole but since I had visited my physician for an annual checkup a few weeks prior, I was not concerned. Out of sheer curiosity I decided to make an appointment with my dermatologist.
The dermatologist, Dr. Zoe* wasn't with me for more than five minutes before she screamed, "I know that this is cancer!" I wasn't expecting to hear that diagnosis and I wasn't expecting the dermatologist to react so violently. After all, during my physical just a few weeks before my doctor had held a stethoscope up to my back and didn't tell me to get checked. Suddenly I had cancer!!
My dermatologist Dr. Zoe* was so sure of her diagnosis that she didn't wait for a biopsy of my mole to come back before she called a plastic surgeon and put me on the list for an appointment. This turned out to be a life-saving decision. Had she waited to schedule an appointment after the biopsy had returned, my cancer may have progressed past the point of treatment by the time I could get an appointment with a surgeon. The first available plastic surgeon happened to have a close friend and colleague who was on the team of the Melanoma Clinic at Johns Hopkins. Thanks to the plastic surgeon's connections, I was soon put in the care of the head oncologist at the Melanoma Clinic.
Before I knew it, I'd had a bilateral node dissection under my arms, that is, on both sides of my body. My sentinel lymph nodes proved to be cancerous and were removed. The axillary nodes were clear. My cancer had to be treated on both sides of my body. It was horrible. The surgery alone was somewhat difficult but the medications and the treatment processes were downright painful. It is a similar process to what breast cancer victims go through when they have lymph nodes removed. I still sometimes wear the special sleeves and gloves for the swelling caused by the lymph node removal.
Today, I am able to claim that I am cancer-free. I go to doctors for regular checkups, I am extremely careful about sun exposure, and I rejoice in every day that I am alive. I am grateful for the things I have in my life and I do not feel that my losses are a punishment or a curse. I am blessed that a stranger at the gym took the time to warn me about my mole. I am blessed that I ended up with a plastic surgeon that put me in such great hands and I am blessed that I have amazing friends and family to support me. Melanoma changed my life. In the midst of all this bad news, there have been silver linings, rainbows, and wonderful things.
I am living proof that everyone is at risk for melanoma, even those of us who are at the opposite end of the spectrum from the sun worshipers. It's like the people who get lung cancer who never smoke. The point of all this is that nobody is risk free. We must be our own advocates for our health. If my mole had been diagnosed a few months earlier it may not have become cancerous. It wasn't caught early, however, and the mole did progress to stage III melanoma. All of us, even doctors can and do make mistakes. It is our job to be vigilant and to live each day to the fullest.
In the summer of 2005, I discovered a pea-sized lump beside my left ear, and an MRI revealed cancer in my parotid gland and a nearby lymph node. Biopsies suggested an aggressive head and neck cancer, but a full-body PET scan showed a malignancy in my liver as well. A liver biopsy determined that the tumors were actually melanoma. I was 56, married with three children in their 20s. Full of life. Despite the terrifying prognosis of stage IV metastatic melanoma, I was determined to fight.
My husband and I consulted a melanoma expert who suggested that I try to get into a clinical trial for a treatment known as adoptive immunotherapy or TIL therapy. TIL, which stands for "tumor-infiltrating lymphocytes," attempts to harness the body's own immune system to recognize and kill cancer cells. At the National Cancer Institute (NCI), where this experimental trial was being conducted, doctors would remove my cancerous lymph node and isolate white blood cells, or lymphocytes, that recognized and were attacking my tumor. The researchers would clone these cells and try to grow billions of them. Finally, the doctors would return this powerful army of cells to my body, where they would fight my cancer. After a number of tests, I was found eligible for the clinical trial and enrolled in October 2005.
I entered the hospital and had my cancerous lymph node removed, and the doctors tried - unsuccessfully - to grow the cells for the TIL treatment. (They are currently unable to grow the cells from about 40 percent of patients.) But while they waited to see if the cells would grow, they put me on high-dose IL-2 (interleukin-2). IL-2 is a tough treatment, and as few as 10 to 20 percent of people have a favorable response to it. I was one of the lucky ones, and it caused my tumors to shrink. I hoped perhaps I would be one of the few who would be cured, but that was not to be. Over the next three years I rode a roller coaster of recurrence and multiple surgeries, but I believed that anything that gives you a chance to live another year, or another month, may mean that a successful treatment could be developed by the time you need it.
I needed such a breakthrough in August 2008, when, to my horror, dozens of tumors appeared in my abdomen. Although the scientists had not been able to grow my cells for TIL therapy that first time in 2005, tumor tissue from my later surgeries allowed them to succeed in 2008, and I was the first person to get a particular variation of the TIL treatment at NCI. The researchers hoped this new variation would be as successful as it had been in animal testing. But it had never been tried in people.
One of the most moving moments for me and my family was the day the technicians brought in the cells they had been lovingly growing for weeks, along with a card signed by all of them wishing me health and luck. An amazing 84.6 billion cells were infused back into my body along with more IL-2. My children, husband, and I did a little war dance around the IV pole. "Go cells, GO," I said to myself.
I was in the hospital for almost a month, and the treatment was very difficult. But by March, all of the tumors except one had disappeared. My doctor recommended removing it surgically, so we did. The pathology report showed no live tumor cells. We were ecstatic! It has now been three years since I received the TIL therapy, and I continue to have no signs of cancer. The doctors are hopeful that the melanoma will not recur. Although I have been fortunate, and this type of immunotherapy is a very active area of research, it is not yet a typical treatment.
So what wisdom can I share from my experiences? Educate yourself about clinical trials, because cancer science is evolving every day. Know all of your options before proceeding. Become an advocate for yourself and others. And never give up hope.
In 2005 I was diagnosed with melanoma. It started when the doctor found a protruding lesion on my chest, which he reluctantly sent for pathology. It proved to be melanoma. The doctor referred me for surgery and my first consultation at Memorial Sloan-Kettering Cancer Center. At this point, the scans did not show signs of other active disease in my body.
A month later the lesion was removed, and I spoke with multiple doctors to get opinions on which treatment to pursue. The data were confusing, but I made my decision. The first night after the initial drug infusion of interferon was the most painful and difficult of the entire six-year experience. However, the hospital staff learned how to reduce the side effects, and after a month as an outpatient, I continued with a year of self injection and scans.
By 2007 scans showed lesions on my lung, and we consulted with some chest surgeons. The surgeon found additional disease on lymph nodes as well. Still grasping for any treatment option to try to slow the disease, I went on GM-CSF, even though my insurance didn't cover it. I did well for several months until additional lesions on my lungs were detected.
In early 2008 things started to look up. I began four rounds of IL-2, and we saw measurable shrinking of the lesions. I was generally encouraged. The constant treatment was very demanding, but at the time it was a necessary step as few other treatment options were available. Meanwhile, talk of ipilimumab (or "ipi") was spreading - fortunately for me, the melanoma was not.
In 2009 scans showed renewed disease in my lungs, and for the first time, a brain lesion. Upon my doctor's suggestion, I immediately joined a small trial to study the effectiveness of ipi on brain lesions. I experienced side effects and actually missed a round but scans quickly showed that my lung lesions had stabilized. Despite the ineffectiveness on the brain lesion, the ipi worked well. I underwent radio-surgery for the brain lesion while the ipi kept the disease in my lungs stable with manageable side effects.
Going into the last few infusions on my two-year trial I remain tremendously encouraged. One major take-away from this is that patients should absolutely accept the argument that even in the face of a tough prognosis, things can change very quickly. Treatments that offer what is seemingly only incremental survival might actually be the ticket to longer term success, as they may get you to the treatment that ultimately works.
I could easily dismiss my previous three treatments as having been unsuccessful based on the fact that my disease kept progressing. However, they helped get me to ipi, kept me engaged in the process, and fortunately, the total experience has been working.
My cancer journey began 22 years ago when my mother noticed a spot on my back. She told me that I should have it looked at, so I went to the dermatologist. Three days later, I got a call that it was malignant, and I had the spot removed.
Eighteen years later, my mother had an aneurysm and encouraged me to get examined. The doctor saw no sign of aneurysm in me but saw something that needed to be checked out, so I had a biopsy. As I was coming out of my haze, I saw my wife sobbing uncontrollably. I found out that I had Stage IV melanoma. This threw me for a loop because I felt great.
I went to Duke and wanted to know how much time I had left. The doctor told me 11 months and that I should get my financial affairs in order. I didn't accept that. I asked him what else I could do, and he told me about interleukin-2 [IL-2, an immunotherapy for the treatment of cancer], which worked in only 15 percent of cases.
I got a second opinion, and then started on treatment with IL-2 at Duke right away.
The treatment lasted eight months, and I was tested every two months to monitor my progress. I originally had more than 30 tumors. After each cycle of treatment, the tumors shrunk.
After the last cycle, the doctor told me that I was in remission. To celebrate, my friends and colleagues greeted me at the airport when I returned to Washington. It was the most humbling moment of my life.
For 15 months I was in remission. I got PET scans every three months.
Then I woke up one morning and started having stomach pains. I had a small tumor on my small intestine and had surgery to get it removed.
I went back to the doctor's for a routine checkup when he found a tumor in my lymph node - my fourth one. I thought, "Is this never going to stop?" I got that tumor removed as well.
I'm not naïve to think my cancer can't come back. But I have been in remission almost three years, and I just feel terrific. To my doctors and nurses, I say, "Thank you for caring about me."
It took less than two months for a lump in my neck to go from the size of a large pea to a golf ball.
I went to a few different doctors who assured me that it was nothing and not to worry. I started to feel like I was losing my mind, but somehow I knew that something was very wrong. I don’t know exactly what it was, other than a feeling in my gut that propelled me to go to the next doctor.
Finally, the fourth doctor I saw sent me for a scan. Life would never be the same. Time stood still. The next few weeks and months were a blur.
I was rushed for a needle biopsy, and then another. The results were inconclusive and the waiting was excruciating.
I was in my bedroom when I got the call. The words that came across the phone line would haunt me for years to come: “You have a malignancy,” the doctor said. I fell to the ground sobbing and screaming. My son was only three years old at the time. He was too young to lose his mother.
I was first told that I had squamous cell, a head and neck cancer that generally affects men over the age of 50. The prognosis was good. I mean, in cancer terms. I was told the cancer would have to be immediately removed, and then I would undergo radiation and chemotherapy. I was told over and over how lucky I was because there was little chance of recurrence. My surgeon was a head and neck specialist.
I went into the surgery without knowing what the outcome would be. I came out confused and in pain. I did not know how bad it was going to be.
They ended up performing a radical neck dissection. I lost 44 lymph nodes that day, a third of my neck, which saved my life. A week later I had a follow-up with my doctor. He said reluctantly, “It appears they made an error with the needle biopsy. You actually have stage III melanoma.” Unaware at the time of how deadly melanoma was, I was initially relieved. I thought, “Melanoma is JUST skin cancer.” There was no primary they ever found, which is unusual.
Then came the wake-up call. I soon came to understand that there was no cure or treatment at the time for metastatic melanoma. I went into survival mode. I was shocked and dismayed at the lack of progress with research and the lack of awareness of the dangers of the disease. I entered experimental trials, went on oral chemotherapy, and tried natural remedies. I also made a decision: I vowed to help find a cure for this insidious disease. As a stage III melanoma survivor, my chances of the cancer coming back were great. If it did return as stage IV melanoma, I would die.
I could not believe this was happening. To this day it still feels like a bad dream. I spoke out, shared my story, and started the Live4Life Foundation (L4L) to raise funds for research and increase awareness about melanoma – how deadly it can be and what can be done to prevent it. I was hopeful that my story could save other people’s lives by teaching them to protect themselves from the sun, protect their children, and let them know they need to get regular skin checks.
Many years after I started L4L, a dear friend told me about Debra Black’s experience with melanoma and her founding of the Melanoma Research Alliance (MRA). She wanted to introduce us, and I was grateful she did. When I got sick, there was little support and less funding for melanoma. As a smaller organization, I was in awe of what Debra and her husband Leon were building and wanted to align L4L. MRA has become a beacon of light and hope in what was once a dark and scary death sentence. We have supported them and will continue to learn and grow with them in the years to come.
This May marks nine years I’ve been cancer free. Each day I wake up is a gift. My son is 11 years old and helps with all L4L events and projects. We both know we will reach the day when no one will have to die from melanoma.
Life is similar to baseball – like life, baseball can teach you things that transcend off the field. In life, just like baseball, you never know when the pitcher is going to throw you a curve ball! And in July 2011, LIFE threw me a curve ball. I was diagnosed with Stage-4 Metastatic Melanoma with an unknown primary cancer and given 6 months to live. I quickly found out that life can turn on a dime. As I started the process of finding out what to do next, I realized that there were limited melanoma therapies available and that this is a type of cancer and that does not respond well to normal chemotherapy.
While getting my DNA tested to see if I carry the BRAF Gene, my doctor at the time decided to give me two rounds of outdated therapy called “IL2 therapy” or “Interleukin 2 Immunotherapy”. During the second round of this therapy, I developed a full-upper body neuropathy that started in my hands and quickly moved throughout my upper body, from head to knees. Because of this therapy and my cancer, I quickly lost 50 pounds in only one month. I couldn’t eat and my hope was fading very fast. At one point I told my wife “That’s it”, and she said, “Go tell your boys you’re not going to fight anymore”. I couldn’t look at my two young sons and tell them I was leaving them. From that day forward, I decided to fight as hard as I could. It will be four years in July, and I’m still here.
After a fifteen year career in professional baseball, I decided to start a youth training organization called Predator USA Training & Baseball Organization. I have been involved with youth baseball for over 25 years now. While in professional baseball, I was with seven different teams and a part of several major accomplishments including being a part of a World Championship organization as a member of the 2001 Arizona Diamondbacks as a Brand Ambassador and Training Center Coach.
My passion in life is baseball. It was passed down to me by my Dad, and helping kids fulfill their dreams through baseball is what makes me get up every day. Since moving to Arizona in 1996, I have been instrumental in growing youth baseball in my community. My life is surrounded by baseball and family! I have been fortunate enough to make baseball my full time career, and I have been able to share my love for baseball with my family, my wife Wendy, and my two sons; Albert (7) and Roman (6). At the time of my cancer diagnosis, they were 3 and 2, respectively.
It’s through love of family and friends that I continue to fight and get better. As of February 2015, I am finally back to work doing what I love – teaching baseball. This cancer has taken a toll on my overall health, financial situation, and wellbeing, but I have my family and will continue to work to be an advocate for Melanoma Research in the hopes of finding a cure. To follow my progress, please visit www.caringbridge.org/visit/Billsandillo.
With red hair and fair skin, Mary Jo Rogers has always known she was at higher risk for melanoma, so she saw her dermatologist regularly. Still, her melanoma diagnosis came as a surprise. In January of 2011, she was diagnosed with Stage 3C melanoma, which meant it had spread to one lymph node.
After consulting with several top oncologists, Mary Jo began a clinical trial studying an innovative immunotherapy treatment. Even though she knew that half the patients who enrolled in the trial were receiving a placebo, she felt the clinical trial was the best course of treatment because she was receiving regular checkups and scans that would detect any signs that the melanoma had spread.
Sure enough, her doctors detected a small spot on her lung that grew over time. Mary Jo enrolled in another clinical trial for a different immunotherapy, where she received treatment every two weeks for nearly half a year. Her latest scans show that the spots on her lung are completely gone.
“I feel very fortunate because I had very few side effects from the treatments, and while my doctors won’t say for sure that I’m cancer-free, I’m as close as possible to being cured of my melanoma,” says Mary Jo.
She has turned her personal story and passion for education to joining the fight against melanoma. She serves as a patient advocate and has counseled many other patients who are battling melanoma.
She and her husband, Brian, are supporters of MRA, and have funded a Young Investigator Award, which aims to attract early-career scientists with fresh ideas and approaches to melanoma research. Mary Jo was recently named to the Board of Directors.
“I wanted to do something in the area of melanoma, and what I loved about MRA is that all the money goes to research,” explains Mary Jo. “I have two friends who died of melanoma in the last year, so I know there is a lot more work to do, and I feel there is a reason I’m still here. Supporting MRA is something that I need to do now to help other patients with melanoma.”