It will be 3 years next month since Julie Frampton began her journey with melanoma. Since then, Julie has created a community Facebook page, collaborated with a parasol company in New York for a year long awareness campaign, distributed sunscreen samples to over 350 kids in her local school districts, and collaboratively raised $10,000 during her first event with her AIM at Melanoma team. When Julie reached out to us requesting to share her story, we were honored! In the words of Julie….
A pathology report is NOT always clear, and when you have a little faith in yourself and whole lot of drive, just ONE action from ONE person can make a huge difference.
Here is Julie’s Story.
How did you discover you had Melanoma? What type or stage did you have?
In March of 2012 I had a bleeding mole in between my shoulder blades, after about a week of it not healing I went to the doctor to have it checked out. I had no information about Melanoma prior to this, so I went to a GP. Worst.Mistake.Ever. He said he didn’t believe it to be anything but would send it off and took a very shallow shave biopsy. After two weeks of chasing him down for results, I was told that I needed to come to his office. At that time, I was told that they weren’t sure but he still didn’t think it was Melanoma because of my age, I was 34. He referred me to a plastic surgeon for a wide excision. It would be a month wait to get into him, so during that time I started researching and decided to get a second opinion from a board certified Dermatologist. I quickly cancelled my appt. with the plastic surgeon and went to who I’ve now coined my Lifesaver. After 2 long months with no answers, and based off of my pathology report the lifesaver referred me to MD Anderson, and said off of what he saw he would say stage 2 or 3 depending on lymph node involvement. My tumor was greater than .09 mm, mitotic, ulcerated, and bleeding, but the GP had taken so shallow of a shave biopsy that my results came back as “Indeterminate for Malignant Melanoma”. At MD Anderson, I met with my Surgical Oncologist who said that I did need the wide excision, but that the head of the department of pathology and melanoma decided that I didn’t need to have a sentinel node biopsy. Their pathology came back the same as Baylor’s..Indeterminate. So he said we are going to treat it as In situ. I’ve since had a second primary, this was also In situ.
*In situ melanoma is the earliest stage of melanoma. In this stage, the cancer cells are present in the outer surface (epidermis) layer of skin.*
What was the primary cancer treatment facility involved in your care? What have your treatments been like?
MD Anderson in Houston, Tx, is where I had my wide excision. As of now that’s the only treatment I’ve needed, they have some of the best melanoma specialists in the world there. Every one from Betty in admissions, to my surgical oncologist, to his nurse for suture removal were great! Also, my amazing dermatologist, Dr. Temitope Soares in The Woodlands TX–aka the Lifesaver–has taken care of me every 3 months since diagnosis, I can’t recommend him enough! Multiple biopsies, a benign tumor, and second primary, and he sees my children, he is my security blanket, God help us when he retires, ha!
What would you say has been the most impactful experience from your diagnosis and treatment?
I’m a “handle it head on” kind of girl, so I threw myself into the online melanoma community and ways to research for more funding, in doing this and getting to know our fellow melahomies has impacted me the most. I have met the most genuine, sincere, raw, caring people I have ever been blessed to meet. They have truly changed my life, and loving and grieving for them and their families has impacted me beyond belief.
What organizations have been the most helpful to you and your family?
Oh wow! So many!
- AIM at Melanoma: I have walked with my teammates and fellow friends at their 5K’s and it has been a huge source of information as far as links to melanoma specialists, family resources, walks, understanding pathology reports, just to name a few.
- Melanoma Research Foundation is another fantastic source of information and when I spoke to the Junior High they sent me tons of information and fun sun facts to pass out.
- Sun Bum sunscreen are huge contributors to the melanoma community. They sent me over 100 samples of sunscreen and fact sheets and fun stickers to pass out to the Junior High kids as well. I did little sun safety grab bags and they loved it!
- The Brelli Sun Umbrellas: I did a year long awareness campaign called Pass the Parasol, in which we used two of these amazing parasols and “Passed” them around the US and Canada. 5% of the sales from my campaign went back into research money. This company has been a monumental in melanoma support and are just plain awesome!
What has been your biggest challenge since your diagnosis?
By far the greatest challenge is getting people to understand just how serious this disease is and that you can’t “Just cut it out”. Even at in situ the chance of it coming back and coming back as stage 4 is a real possibility. Also, what they don’t tell you at your treatment are all the emotions and at times major anxiety that you have after diagnosis, and that it never really goes away. In Mela-land we call this scanxiety and molexiety. The waiting for results and the drop in your stomach when they haven’t called and then when they do is agonizing. Every time you get a sniffle your brain automatically thinks the worst, not to be heavy but this is the taboo stuff nobody tells you but yet, in our melanoma community, everyone deals with.
And your greatest source of strength?
MY FAMILY. I have the most supportive, encouraging, and loving husband out there. Seriously even when I’m not very lovable he does it anyway. He has supported every hair brained idea I’ve come up with and trust me, there are a lot. And my two beautiful children. I have an amazing 14 year old daughter, who never ceases to amaze me and no matter what is on her plate will always rise to the challenge. My son is 5 and is high functioning autistic, ironically we got my melanoma diagnosis and his autism diagnosis the same week. He is the most sincere, sweetest and funniest kid you will ever meet. Both of my children are my greatest accomplishments and I am so very lucky to be their Mom.
Also Donna Monciviaz, she is amazing and I just flew to Chicago to join her St.Baldricks team to raise money for Pediatric Cancer Research, we were the top raising team coming in at over 5400.00 and we shaved our heads. Best experience ever! I draw so much strength from her it’s not funny! There are so many more people! And my melahomies! I can not begin to put into words how much I love this community and how many lifelong friends I have made. Brandi Dickey changed my world and I miss her dearly.
Do you believe tanning or sunbathing was a factor in your developing melanoma?
Absolutely! I’ve lived in Texas most of my life and played sports in long hot sunny days. I also use to go to the lake and lay out, the pool and lay out, and as much as I hate it now, laid in the tanning bed. I wasn’t a regular, but definetly used them around major events, such as prom and vacations. I have an olive complexion and don’t burn easily, I thought that was my saving grace, oh how I know better now!
How has your melanoma diagnosis changed your life?
It has changed everything. I am passionate about everything I do and try to live life the fullest. It has brought me and my family closer, and given me a platform to channel my drive for wanting to help and educate others about this disease. I have cut negativity out of my life because quite frankly, life is too short for the nonsense. I started a FB page to talk about my experience and try to connect others to people that need to know that they are not alone.
Is there an inspirational quote, song, or book that inspires you that you would like to share with our readers?
Pale Girl Speaks: This book was one of my favorite reads when I started on this journey. I laughed, I cried, and laughed some more. “Strong is what you have when you’ve used up all your weak”.
One person CAN make a difference, so be that one person.
What advice would you give someone who thinks skin cancer won’t happen to them?
That “tan” that looks so good, it can kill you. That tan skin whether from the sun or a tanning bed is damaged skin at the cellular level and it’s literally your skin’s defense system against that damage. Your skin is your largest organ, most people don’t look at it like that, when in fact its like any other organ, your heart, liver, brain, and should be taken care of like your other organs, and that it is all the same sheet of paper, you can get a sunburn on the top of your head and develop melanoma where the sun doesn’t shine. The only place you CAN’T get melanoma is your hair and your teeth. Just by using sunscreen and sun protective clothing, sunglasses and hats you can diminish your chances of getting melanoma two fold. Please do monthly skin checks, and see a board certified dermatologist once a year for a full body check, it is so important! None of us would wish this on anyone so we are doing our best to protect you.