The Person in the Images: A Patient Perspective on Cancer Diagnosis, Therapy, and Living with Cancer

Please Describe Your Cancer Diagnosis and Immediate Response

I found a lump in my left armpit while shaving in the shower in June 2015. My reaction was SHOCK!!!! (Noteworthy—the week I found the lump was 1 year to the day that my husband died of a tragic motorcycle accident.) My immediate response was to have my professional co-workers in health care assess the lump. We were unsure what it was. My primary care physician completed an examination and indicated that at my age (35), the lymph node (albeit nontender) was unlikely to be cancer. Since my brother was diagnosed with Hodgkin lymphoma at age 35, the doctor referred me to mammography and ultrasound. Both imaging studies produced inconclusive results, so I had a biopsy of the lump. (Note, brother is in remission with NED [no evidence of disease]). The mammogram and ultrasound were both inconclusive, so I had a biopsy of the lump.

While walking into a work meeting on Thursday morning, July 15, 2015, I received a call telling me I had breast cancer and would meet with the doctor the next day to discuss. I attended my work meeting and completed the rest of the day, all while trying to conceal my fear and emotions. I met with the breast surgeon the next day, who described my difficult to treat and very aggressive triple-negative breast cancer diagnosis. Even though I work in public health, I had never previously heard the words triple-negative breast cancer. I did not realize breast cancer has subtypes. My understanding of prognosis was that I had little chance to survive. I needed to get treatment as fast as possible because my son needs his mom. After my case was reviewed by the tumor board, I met with my oncologist and was on the fast track to dose-dense therapy. The therapy plan sounded like it would come 99% of the way to killing me. I had my infusion port placed at the beginning of August 2015, with my first infusion of chemotherapy on August 6. My treatment included four rounds of adriamycin and cyclophosphamide, 12 rounds of taxol, a double-modified radical mastectomy with lymph node removal, 25 rounds of radiation, eight rounds of capecitabine (at the time an investigational drug for breast cancer), and finally breast reconstruction surgery over 16 months. I completed treatment while working full time at the health department, raising Caleb, and maintaining my home. I continue to have yearly follow-up surveillance appointments and recently underwent both MRI and CT scans.

How Did Cancer Affect the Mental and Emotional State of You and Your Family at the Time of Diagnosis and Treatment? How Does Cancer Affect You and Your Family Now?

I had an established relationship with a psychotherapist and was already seeing her biweekly while processing my husband’s death. The cancer diagnosis was UNBELIEVABLE. I recall speaking with my therapist and my recently cured brother about the dose-dense treatment plan for my cancer. I remember reading an acronym for FEAR as meaning Face Everything And Rise. My family and friends were amazing with the amount of unsolicited support, and my parents were great to help me with care for my son so I could be sick after the treatments and heal after the surgeries. Cancer is a reality in my family, and I think that true compassion comes from facing something directly. It is difficult not to instantly think that every new ache or pain isn’t cancer-related, but for the most part I do not have fear of recurrence until it is time for a fresh scan or bloodwork. The posttraumatic stress disorder (PTSD) from my medical treatments is real. The emotional toll of being sick is exhausting even beyond the side effects of treatment. The ongoing love and support from my son, family, and friends kept me going during treatment. I could not and will not leave Caleb to face this world alone with no parents.

What Aspects of Cancer Diagnosis, Treatment, and Care Went Well for You?

The speed and efficiency that I received my appointments and care. I work with oncology staff members from a variety of health systems on coalitions, so I did not feel the need to shop around. I also understood the tumor board review process. Based on my experiences in the processes of treatment, the hospital facility used my feedback to complete plan-do-study-act (PDSA) cycles for a variety of their practices.

What Parts of Your Experiences with Medical Care for Cancer Should Be Improved and How Would You Suggest to Improve Them?

Survivorship—what comes next after the intensive therapy stops? You are done with cancer therapy, but you are not done with cancer. People expect that you will just jump back into life and work as you previously were without considering or understanding the long-term and permanent side effects of intensive treatment on a young working professional. Chemo brain is a real thing. I sometimes am in the middle of something and just forget what I am doing. I make lists to remind myself of things, and I am strategic about how I plan my workday. No creative brainstorming meetings in the afternoon as I do not focus well then. It is frustrating to feel that I am in a fog sometimes. For one meeting related to work, I had to enter a hospital through the surgical entrance rather than the main entrance. The smell, sounds, and environment of the surgical environment caused me to panic and feel nauseated. I still had to pull through and attend the work meeting plus the rest of the working day. It is hard to distinguish among chemo brain, PTSD, and other lasting side effects of therapy.

The survivor care plan is great to receive, but the care and concerns don’t end there. When I saw an oncologist for some breathing difficulties post radiation, he told me nothing was wrong and that I just had anxiety. Having managed mental illness since high school, I knew that it wasn’t “just anxiety.” After following up with a pulmonologist, I learned that I have a decent amount of scar tissue from radiation, leading to asthma and interstitial lung disease. Follow-up plans vary greatly among persons with a history of cancer. Some persons I know get follow-up scans and blood tests every 6 months rather than yearly. I wonder if they are getting better care than I am, even though I have good health insurance. I wonder why follow-up is not standardized based on stage and type of cancer.

What Motivates You to Be a Patient Advocate?

I am motivated by the people I know that have died of cancer and the people that are still here fighting for their lives. I know just how terrible the treatment really is. If I can make someone else’s existence even a little more comfortable, I am going to do it. There are many moments that you are staring death in the face and don’t know how much longer you can physically hold on because you are so weak and beaten down and sad. I know that when I speak to a patient that I can relate to them and show them that they are doing it. I help them reframe the mindset to “I am doing it” versus “I can do it.” I love empowering patients and giving them the tools to feel that they are an active member in their treatment plan.

What Would You Like Health Care Givers to Know That Would Improve Care for Patients and Families?

When I choose a physician, I am trusting that person with my life, my longevity, and whether or not I am going to see another one of my son’s birthdays, so the time we spend together is priceless. The patient-doctor relationship in oncology is of the utmost importance. I need to feel heard. Visits must not be just checking boxes but hearing a patient’s concerns and evaluating their symptoms. The conversations and interactions, however brief, are valuable. Fear is a real emotion, and not every patient has the love, support, and financial resources to complete the outlined plan. Support services are wonderful but matching what works for the patient and family to what is available is imperative and needs to be revisited throughout treatment.

What Information Would You Like Cancer Researchers to Know?

There are young cancer survivors returning to the workforce and trying to manage the stress of working after a diagnosis and suffering the permanent side effects of treatment. I have battled for years to get Americans with Disability Act reasonable accommodations for my office, and it has been an uphill battle. I am not eligible to retire for another 20 years. I often wonder if my quality of life is sacrificed further to work a full-time job. I often wonder if the trauma and stress of life has caused me to be sick. Can I last another 20 years working? I think providing care for my son is more important than my job, so I am trying to find a better balance between them.

Please Describe Any Other Information You Would Like to Tell Persons in Cancer Research and/or Clinical Oncology

Survivor care is a critical area of cancer that commonly is overlooked by health care systems. Not all patient support needs to come from a high-level medical professional, which is where patient navigators, social workers, and survivor groups play essential roles. Not all toxicity of cancer treatment is mental or physical. Financial toxicity of cancer is real and needs to be addressed at regular intervals. Social support is imperative, but not all support groups meet at convenient times. For a working professional and mom, I cannot attend a cancer support group that meets during the working day or immediately after work. Helping patients match resources with their needs and schedules is essential for survivorship and re-entry into life after treatment. I keep that in mind when I work with groups such as Imerman Angels. My interactions with patients I am linked with through this organization help both the patient and me manage our ongoing battles with cancer.