When you are first being told that you have cancer, you don’t think clearly; in fact, you don’t really think at all. You don’t question the diagnosis, because you are too emotional to question it. When my doctor first told me I had breast cancer, he said that he did not actually find any evidence of breast cancer, but he was sure that it was there, “somewhere.”
I imagine that most people who are reading this article would have questions about this, such as, how is it possible? And how can you make a breast cancer diagnosis without actually finding a tumor or any evidence of breast cancer? But when you are the person sitting in the patient chair, those red flags are not always raised. You are too shocked to question it. At least I was, and these questions did not come up for me.
A Lump Under the Arm
My journey to a breast cancer diagnosis started when I noticed a lump underneath my arm, which was followed by a mammogram, which came back with inconclusive results. The breast surgeon I mentioned above who had informed me that I had breast cancer said that the mass was too big to be removed surgically. He said that although he could not find anything conclusively pointing to this diagnosis, he was certain that I had triple-negative breast cancer.
I never thought that this was the right diagnosis, because no one in my family had cancer (or breast cancer), but in that moment, I had no idea what to do, so I just did whatever the experts told me to do, which is probably what many people would do. I was told to start chemotherapy immediately.
Less than 2 weeks after my cancer diagnosis, I was in the hospital getting my first chemotherapy infusion. But as I finished that first round of chemotherapy, my cancer journey was flipped upside down.
“I Think We Got That Wrong”
A nurse came in and told me that my doctor wanted to see me. I went into his office and sat down across from him. He said, “I think we got it wrong; I don’t think you have breast cancer.”
My oncologist told me that it was not breast cancer, but instead I had skin cancer, the type called cutaneous squamous-cell carcinoma, or CSCC for short. My first thought was, “Well that makes far more sense.” I knew I had Crohn’s disease, an inflammatory bowel disease, which affects the digestive tract, and one of the medications that I have been taking to manage the symptoms of Crohn’s disease is known to increase the risk of skin cancer.
I have always been very careful about seeing my dermatologist regularly, almost monthly, to check for any sign of skin cancer, and when I had any worrisome areas in the skin, I would have tissue removed and biopsied, to see if there was any suggestion of cancer.
Your Medical History Matters
A few years before being diagnosed with breast cancer, my dermatologist removed an area of skin that she thought looked like skin cancer. This area was biopsied and came back as aggressive cutaneous squamous-cell carcinoma. All the cancer was removed during the biopsy, but my dermatologist referred me to an oncologist as a precaution. The oncologist reviewed all my information and agreed that I was cancer-free, and no further treatment was necessary.
Everybody, even my dermatologist, had always told me that melanoma was the only skin cancer I had to worry about, because of the Crohn’s disease medications I was taking. So, I did not think that it was a big deal to have cutaneous squamous-cell carcinoma.
However, when the oncologist who was treating me for breast cancer reviewed my medical history and realized that I had a history of skin cancer, he arranged to have the pathology of the current suspected breast cancer tumor and the previous skin cancer biopsy compared, to see if they were the same, which they were. And that is how the oncologist knew that the original mass was not breast cancer, but instead it was skin cancer.
Unfortunately, the correct skin cancer diagnosis came 3 hours after I had already completed my first round of chemotherapy for breast cancer, which I knew would make me lose my hair. Although my cancer journey to that point was anything but simple, my hair falling out was still one of the more traumatic times for me.
Running Out of Hope
My oncologist suggested that I should continue with the same chemotherapy I had started for breast cancer, in hopes that it would shrink the tumor, so I could have surgery to remove it. Since I was already going down that path (and already going to lose my hair), I agreed, but before I could undergo my next treatment, a CT scan showed that the mass had doubled in size.
Initially the doctors said that I could not have surgery, because the tumor was too big. But then they said that I needed to have surgery, even though it was twice the size now, which I found terrifying.
After surgery, I started an 8-week treatment of a combination of radiation and a chemotherapy that is used specifically for metastatic cutaneous squamous-cell carcinoma, but my next CT scan showed that the cancer was still there, which was not a surprise for metastatic cancer.
This was the first time the doctors mentioned this was metastatic squamous-cell carcinoma. Until that time, I had always been told I had basal and squamous-cell skin cancer. Now they were alarmed, because metastatic squamous-cell carcinoma is uncommon, and they were not used to treating it.
I was referred to a specialized surgeon in Tucson, Arizona, who attempted to remove the mass again, this time taking out as much as possible, including some of the nerves and muscles in my back. But this still did not get all the cancer out.
With surgery and radiation no longer an option, because I had reached the limit allowed, my oncologist told me I had about 1 to 2 years left to live.
New Therapy, New Hope
For a while it looked like all my options were exhausted, but then I learned about a new therapy that was probably my last hope. That therapy was Libtayo (cemiplimab-rwlc), which was the first therapy to be approved by the FDA (in September 2018) for the treatment of patients diagnosed with metastatic or advanced cutaneous squamous-cell carcinoma that cannot be removed by surgery.
I started treatment in July 2019 with this new drug Libtayo, and just 3 months later, my CT scans showed no signs of cancer. Being the skeptic that I am, I didn’t immediately get my hopes up, but after 3 more months, my CT scans were still clear, showing no sign of cancer. Finding Libtayo was Godsent.
I finished treatment in July 2020, with clear scans that show no sign of skin cancer. I know I am not going to live forever, but I now have hope for a future, which is something I did not have before.
Trust Your Instincts
I often wonder how long it would have taken the doctors to figure out that I did not have breast cancer, if that other pathology report was not on file, and if there was anything I should have done different.
When I was first diagnosed with triple-negative breast cancer, I got in touch with a friend of a friend, who had the same diagnosis. She told me that when they gave her the diagnosis, she asked them to take her case to a Cancer Board, which consists of a group of doctors who meet monthly to form a consensus on the diagnosis and treatment of specific cases that are unusual.
In fact, she refused to receive treatment until that step was taken. Looking back, I think that is an important approach, especially if your instincts are telling you that something may be off with your diagnosis.
When people hear my story, especially other patients who are dealing with a cancer diagnosis, I hope that they take away the importance of being comfortable with the doctors to whom you are entrusting your care, as well as with the diagnosis and treatment plan.
I strongly suggest that you stop and take a day or even a few days to get a second opinion, do your research, and get to a point where you are comfortable going forward.