By: Stacey Ann Jones
In July 2021, I noticed a small mole on my left butt cheek that often kept itching. I didn’t think a lot about it at the time. But within a couple of weeks, it started to rise off my skin and grow larger. I still did not think a lot about it besides it was a nuisance! But I had two moles on my face that I wanted off for personal reasons, so I decided to make an appointment to remove them.
Fast forward to September, when I finally went to my family physician. He looked at all 3 moles and wasn’t concerned either. Even though the one on my butt cheek had grown and was itching, he thought it was also a nuisance. But because of the ones on my face, he didn’t want to remove them and referred me to a plastic surgeon. About two weeks later went to the plastic surgeon, and he looked at all 3 moles. He was not concerned either, he just thought of them as a nuisance, so I also thought nothing about them. We scheduled the procedure to remove them for about a month out.
In the meantime, the one on my butt cheek grew even more and became painful along with the itching. It was painful to sit down. I called my plastic surgeon and sent him some pictures. He still didn’t think it was anything to be concerned with and just said I had scratched it and gotten it infected. So he told me to put antibiotic cream in it, and it would be fine. A week later, it was not okay. It was ulcerated and bleeding with a fever in it. So I went to a physical appointment with the plastic surgeon. He still wasn’t too concerned but scheduled my procedure for the following week.
I went in on a Tuesday in November, and a week later, on a Friday afternoon, my biopsy came back via Mychart. My heart sank when I opened my results and saw Clark’s Level 4 Melanoma cancer! In Clark Level IV, the cancer has spread into the reticular dermis. There are only five layers of tissue for the cancer to spread, and I was at the 4th level. I immediately called the plastic surgeon who did the procedure, and he could not take my call. I left a message, and finally, a nurse called me back. I will never forget how unprofessional and heartless she was. I asked her to explain what this meant. I mean, I had been told numerous times this mole was nothing to be concerned with, and now I have melanoma cancer. This nurse said, “Well, it is melanoma skin cancer, which is the worst, and no one wants it. We will make you a referral to the oncologist, and they will call you to schedule an appointment.” I was stunned by how heartless she seemed like I was bothering her. I couldn’t speak because I was crying, so I just hung up the phone without saying a word!
As many people do, I started googling it. And boy, was that a big mistake!
I went all weekend scared to death because I didn’t have a professional answer and didn’t know the next step. All I knew was I had cancer and had to see an oncologist! A week later, I finally got an appointment with the oncology surgeon. Because it was so deep and growing fast, we immediately scheduled a wide local excision (WLE) and a sentinel lymph node biopsy (SLNB). The surgeon had to make a 12 cm excision on my left butt check down to the 4th layer of tissue to ensure he got all of the cancer. I teased that I would need a BBL now! LOL. We also had to do a 6 cm excision in my left groin area to get a lymph node biopsy.
About two weeks later, I received my biopsy results and complete diagnosis. The surgeon staged me at 2c Melanoma Cancer, Braf positive (very aggressive), but he felt like he had gotten it all during surgery. However, because I was Braf positive, I had to see a melanoma oncology specialist for treatment/prevention of it returning.
I went to see an oncology specialist who wanted me to do at least a year of immunotherapy treatment. I started in April 2022, going for three weeks for about 2-3 hours for an immunotherapy infusion. The side effects started with lots of fatigue and nausea. By my 5th treatment, I started with severe diarrhea and headaches. The oncologist started me on steroids, and I continued with treatments. By my 7th treatment and numerous ER visits, I had developed colitis. I had to stop treatments and do a couple of rounds of IV steroids and fluids. Finally, after about two weeks, I started feeling better. The diarrhea had subsided. However, I started having issues with an extremely high heart rate (tachycardia). We were watching it closely, but one Friday afternoon, my Apple Watch kept alerting me every few minutes of my elevated heart rate even as I rested. I called the oncologist on call, and they wanted me to go to the ER. I got to the ER, and they started testing right away. One test they did was a Cat scan with contrast to look for blood clots. They did not find any blood clots but discovered my cancer had returned. The CT Scan showed a tumor in my left pelvic and a small one in my right lymph node.
This was devastating! After all, I had surgery, and the surgeon said he got it all, and I had done seven treatments of immunotherapy that were physically and mentally tolling on my body! And now, I’m being told my cancer is back that fast! The following week I saw my oncologist and scheduled a pet scan. The cancer was back and growing pretty fast. We scheduled another surgery to remove it and did this in October 2022. By the time I had surgery, the tumor on the left side was about 7 cm, the size of an apple, and I had two small ones on my right lymph nodes. Everything was removed in surgery. Due to my aggressive form, I was then advised to start targeted therapy, two forms of pills.
I started the targeted therapy, and I had side effects. Nausea, diarrhea, headache, fatigue, all over rash, and I began to lose all my hair! So we backed down the dose to try and reduce the side effects. This did help some with the diarrhea, but that was it. My current oncologist told me this was my last option, and I had to suck it up and do the treatments. I felt so defeated and scared. This was just supposed to be skin cancer, and now it’s spread. I am now diagnosed with stage 3c. I must do targeted therapy, possibly for the rest of my life! How in the world am I supposed to live like this?
Luckily my amazing husband and daughter were with me every step of the way advocating for me when I didn’t have the energy to do it myself.
My daughter contacted MD Anderson Hospital in Jacksonville, which specializes in Melanoma Cancer. She got me an appointment, and my husband took me off to Jacksonville. The specialist said that the current treatment I was on was not my last option. He gave me referrals for other therapies and sent them to my oncologist in Greenville, SC. The two oncologists got together and made a different treatment plan for me. This was all because my family advocated for me and pushed me when I couldn’t!
I started the new treatment in February 2023, and by March, I began to feel more like myself than I had in over a year. Don’t get me wrong, I still have side effects, fatigue, hair loss, and nausea occasionally, but it’s ten times better with the new treatment!
On March 24th, I had a Pet Scan done and am now in remission. I will have to continue my target therapy treatments until they stop working/cancer comes back. But for now, I feel blessed with no cancer and minimal side effects! My journey is far from over, especially with summer coming up! I have to be so careful about being in the sun. The least little burn could become Melanoma. I must see a dermatologist every three months for a full body check. This journey will continue for the rest of my life! But I am here and alive!
The most important advice I can give is don’t wait if something looks or feels different on your skin. You know your body better than anyone! The slightest change and early prevention could prevent you from going down the same road as I am on. Wear lots of sunscreen, and don’t do the tanning bed! I can’t say 100 percent, but as a young adult, I did a lot of tanning beds, which is likely where it all started! It’s not “just” skin cancer, it’s cancer! More than two people die every hour and every day in the US from skin cancer! Early prevention is the key!