My guest on this episode is Kelly Thomas. She was 33 years old when diagnosed with stage 3, triple-negative invasive ductal carcinoma in January 2018. Kelly shared her story behind the pink ribbon from finding her lump, diagnosis, and treatments. We also talked about the differences between being diagnosed at a young age versus later in life and how those who are diagnosed before the age of 40 are then kicked out of the adolescent and young adult (AYA) support groups once the patient turns 40.
Kelly Thomas was 33 years old in January 2018 when she was diagnosed with stage 3, triple-negative, invasive ductal carcinoma. She found a lump in her armpit during a self-breast exam. Kelly shared that always went to the doctor, always did self-exams, and always sought out care if something seemed off. She had done her self-exam in the shower and did not feel anything prior to finding her lump when she had crossed her arms. Given her experience volunteering with the American Cancer Society, she immediately thought it was breast cancer. She wondered how she could have missed the lump during her self-exams. While doctors tell us to do self-breast exams, they don’t actually teach us how to do them.
Kelly made an appointment with her gynecologist who was very supportive but also was not overly concerned with cancer. She was told that 80% of lump turn out to be non-cancerous. Kelly recalls googling breast cancer and seeing the same statistic but also that young women do not get cancer. While the internet can be bad, it helped to ease Kelly’s mind.
When she went for her mammogram, Kelly felt calm and collected but when she put on the gown, it hit her that this was real. She felt like the technician knew it was cancer from the first image. Kelly recalls trying hard to hold back tears. She was told that there were areas of suspicion and she would need to go for an ultrasound immediately. During the ultrasound, the doctor counted five different areas that appeared to be suspicious. While the doctor was not definitive that it was cancer, the doctor mentioned cancer and told Kelly that whatever it was, they needed to get it out. Kelly’s gynecologist called her as she left the appointment to tell her that she needed to have a biopsy.
A few days later, Kelly returned for a biopsy. She recalls that the experience was not so bad. She had a biopsy of the largest tumor area and lymph nodes. The doctor told her it would be several days before she got the results of the biopsy.
During the time between having her biopsy and receiving her diagnosis, Kelly was dealing with a kidney stone that she could not pass. She feels like it was her body’s way of telling her that something was wrong. Due to the pain from the kidney stone, Kelly went to the hospital for treatment. The doctor ordered a scan for the kidney stone. Following the scan, the doctor told her that they had found a lump in her breast and gave her a pamphlet on breast cancer. She recalls that the doctor had told her that 80% of breast lumps turn out to be non-cancerous.
Kelly received the call from her gynecologist that same day and was told that she had breast cancer and that she needed to see a breast surgeon immediately. Her gynecologist had already made an appointment for Kelly with a breast surgeon. While still dealing with the kidney stone, Kelly recalls lying in the hospital bed and sharing the news with a nurse. The nurse hopped in the bed with her, held her, and told Kelly that she is a survivor of stage IV Hodgkins. Though the nurse gave Kelly her phone number, Kelly never called but she really appreciated that moment.
At the appointment with the breast surgeon, Kelly was told that the cancer was between a stage 2-3. She was stunned by this information because she thought for sure that it would be early-stage cancer. The recommendation for Kelly was to have a bilateral mastectomy. She recalls the conversation about egg preservation and being told that she did not have time to do egg preservation. At that time, Kelly had been married for 6 years, and having children was not necessarily part of the plan. She was less concerned about whether or not she wanted to have a baby and more concerned with surviving cancer.
Kelly saw an oncologist who explained what it meant that the cancer was triple-negative. While the oncologist was very knowledgable and did a great job of explaining her specific type of breast cancer, he also told Kelly that people have died from that kind of diagnosis. Kelly struggled with being told that kind of information. Those words have become tattooed on her soul. She was terrified to talk to him and to be with him by herself. After some time, Kelly opted to seek out a different oncologist.
Kelly underwent 16 rounds of chemotherapy followed by a nipple and skin-sparing bilateral mastectomy. Prior to having the mastectomy, her oncologist ordered an MRI to check the status of the tumors following chemotherapy. Kelly had a full pathological response and there was no cancer evident on the scan. She had expanders placed under her chest muscles, which she described as being very painful, before having reconstructive surgery to place implants. During the mastectomy, there was cancer found in her lymph nodes but it was estrogen positive, which is known as clonal evolution. Kelly had 28 rounds of radiation therapy.
Kelly sought out support through cancer support groups. With COVID-19 changing the ability to access support groups, Kelly decided to host zoom calls for her friends. During one of the calls, a 2-time survivor shared that she had been told she could no longer attend the AYA (adolescent and young adult) support group because she had turned 40 years old. This prompted Kelly to create a post on Instagram about not kicking 40-year-olds out of AYA support groups.
Having a cancer diagnosis at a young age is very different from a diagnosis in later years of life. Even at the age of 40, the experience is still very different from what is considered the “average” age of diagnosis. Kelly feels that giving the decision to the patient is important. The patient should decide what group it is that they align with in their experience. If there are going to be separate groups for cancer support, it should not be at the extremes. There are individuals in the middle between AYA and “average” age whose needs are not being satisfied. Breast cancer is isolating and debilitating. It is not okay to dismiss someone who is in their 40’s following a diagnosis of cancer at a young age. Many of the people making decisions on how to support individuals impacted by cancer never had cancer. It is important to listen to the people that are being supported. We need to find a way to integrate those “middle” people into their thrivership.