A Discussion with Dr. Carrie J. Nelson

According to 27-year-breast-cancer survivor Dr. Carrie J. Nelson,fear overwhelmed her in the moments just following her diagnosis, but she moved past emotion and turned her energy outward,founding a nonprofit to help others.

Tell us about your cancer diagnosis.
My cancer experience began on a winter day in Grand Blanc, Michigan, in March of 1990 with a shocking diagnosis of ductal carcinoma in situ (DCIS). This meant that there were abnormal cells inside a milk duct in my left breast.

What was your first thought when you heard the diagnosis?
Honestly, I remember not having much of a first thought, just a lot of feelings, with fear leading the charge, then panic and disbelief. Am I going to die? What about my family? I had just had my last child who was now only nine months old! I was a health nut. I was an avid daily runner.

Through the treatment process, what did you want and need from your friends and family?
My family and friends were key to keeping my sanity throughout surgery and into recovery. My three sons gave me the encouragement and confirmation that there was life and so many reasons to overcome this cancer challenge. My husband was in Alabama at the time waiting for the rest of the family to move there. Humor was a constant help.

Humor was a constant help.

For example, there was the time my nine-month-old ate the nipple on my breast prosthesis (I didnot have reconstruction and still have only one breast), and we called the poison control center to report that my baby had eaten my breast. You can only imagine what a laugh they had about that. They were (after their laughter stopped) able to tell me that the prosthesis was non-toxic and the baby would be fine. Additionally, I come from a family where God, prayer and spirituality are entrenched in our lives.

What led to the formation of Sistas CanSurvive Coalition?
During the time of my diagnosis in 1990, there were few forms of formal help and support and a lack of easy access to information about early detection and treatment to address the needs of African Americans and other medically underserved populations affected by breast cancer.

Shortly after surgery and moving to Alabama, I quickly learned that African-American women are 20- to 40-percent more likely to die from breast cancer than white women. There are several reasons for this disparity including genetics (my genetic testing reveals that I carry the BRCA 2 gene mutation), lack of access to early detection and treatment and lack of access to vital information and support resources to educate the public on ways to combat breast cancer. Because of this gap in support services, I founded the nonprofit organization SISTAs CanSurvive Coalition, Incorporated in 1994 to combat breast and other cancers using a culturally sensitive approach of support groups, research, community outreach and public awareness events.

A particular special assistance effort that stands out for me are the grant awards that partially fund the SISTAs Survivors Health Initiative Project (SHIP), which provides breast cancer survivors and their families with cancer and related chronic comorbid conditions with education and supportive care services to help make informed decisions regarding healthy lifestyle changes in nutrition, physical activity and survivorship care. SHIP includes group-based exercise, nutrition, survivorship-education classes for survivors to continue life enhancing practices at home.

What one thing that you did for yourself that most helped you cope? Remaining in prayer. For me, prayer covered
meditation, using imagery and staying focused on being positive. It provided hope and uplifting encouragement from depression and anxiety.

Care for Caregivers
“Caregivers play critical roles in providing care for their loved one during the cancer journey. I know this all too well from when I served in this role as a breast cancer patient myself while also caring for my mother who passed of ovarian cancer, providing support for my two first cousins during their treatment for breast cancer, and currently providing care for my only sibling who is a survivor of ovarian cancer and is currently one year into her battle with pancreatic cancer. As a caregiver, you will hold many roles: advocate, transporter, counsel, advisor, comforter, confidante, hand-holder and the person who may be on the receiving end of their anger and other emotional moments. The emotional toll can be overwhelming at times, and caregivers are prone to fear, doubt, guilt, hopelessness, depression, fatigue and anxiety. Enlist the help of trusted others to step in while you take a break. Make sure you are getting enough rest, proper diet and exercise. Take time out to do something fun and relaxing. Seek professional help if you need it.”

What advice would you give other caregivers on how to approach and help their loved one going through treatment? First, if your family is spiritual, add prater to your help list. Second, learn and follow advice on what to say and what not to say to a breast cancer patient or if they suspect breast cancer.

How to truly help: do’s and don’ts?
Examples of what to say: I am here if you want to talk to someone. Is there someone you want me to contact? Are you up for having visitors?

Examples of what to do: Don’t leave if things get emotionally heavy. If the person gets angry, let them vent. Actively listen to them. Run errands.

Examples of what NOT to say: Don’t force a conversation if they don’t want to talk. Don’t compare what you thing they are going through with something you have been through. Be mindful about talk about hair. Hair loss is a common side effect of treatment, and some patients are more conscious of upset about their hair loss. Try preparing a gift basket of head scarves, caps and hats. Don’t say “It coud be worse.” Or, “Everything is going to be ok.” Accompany your loved one to appointments and ask if the visit can be taped so that you/they can review what was advised later. Talk with your loved one about making health and wellness lifestyle changes to improve diet and exercise (with clearance from the patient’s doctors.) Assist them in inquiring about participating in a clinical trial if interested.

For more inspiring survivor stories, check out these Joy to Life podcasts.