ASCO 2021: Living Life Large After Rectal Cancer: A Patient and Caregiver's Story

( In this presentation, Eden Stotsky-Himelfarb, RN, shared her personal story of being diagnosed with a pelvic cancer at a young age that required treatment with radiation and chemotherapy, and the significant impact this had on her life subsequently.

Eden was diagnosed with stage 3b rectal cancer at age 26. She was treated with low anterior resection and bilateral oophoropexy, 30 radiation treatments, and 30 chemotherapy. Afterward, she entered into surveillance with colonoscopy and scans. She has also had six unsuccessful cycles of in vitro fertilization. The experience of being diagnosed and treated for pelvic cancer impacted her career path (move from human resources to oncology nursing), relationships, and the daily logistics of her life.

For patients who have undergone low anterior resection and pelvic radiation, the risk of longer-term GI side effects either related to low anterior resection syndrome or from late radiation toxicity entails the possibility of unpredictable bowel function, altered stool consistency, increased stool frequency, urge incontinence, soiling, and emptying difficulties. These symptoms can be modulated with rifaximin, sacral nerve neuromodulation, or diet alterations. The latter intervention worked for Mrs. Stosky-Himelfarb.

The impact of her treatment on her GYN tract and her ability to have children was significant. She experienced some radiation-related vaginal stenosis and became aware of barriers to compliance with dilation, specifically feelings that it is awkward, and uncertainty around how to do this/when to do this/how often to do it. Regarding fertility, she tried IVF but was ultimately told that the impact of her treatment was that her uterus could not carry a fetus. Fortunately, she was able to pursue both surrogacy and adoption and ultimately ended up adopting a child. Later, due to the detection of a CHEK2 mutation and concerns for secondary cancer after radiation, she underwent a total abdominal hysterectomy and oophorectomy, for which she is receiving ongoing supportive care for the side effects of menopause.

Finally, Mrs. Stosky-Himelfarb discussed survivor anxiety and the stress of each scan that persists despite having been cancer-free for an extended period. Another stressor of survivorship is that physicians leave, and sometimes you end up with a physician who is less experienced with cancer survivorship. She highlighted several online resources for patients such as the colon club, the colorectal cancer alliance, fight colorectal cancer, and blue hope nation.

Presented by: Eden Stotsky-Himelfarb, BSN, RN, ONN-CG, Breast Cancer Multidisciplinary Nurse Coordinator at the Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University, Baltimore, MD

Written by: Alok Tewari, MD, PhD, Medical Oncologist at the Dana-Farber Cancer Institute, at the 2021 American Society of Clinical Oncology (ASCO) Annual Meeting, Virtual Annual Meeting #ASCO21, June, 4-8, 2021
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