ABCD: The Power of One-to-One Support

June 28, 2024

Written by Michele Juliano, RN, ABCD Mentor, Breast Cancer Survivor

Edited by Gina Rich

Breast cancer affects more and more people every year. According to the American Cancer Society, in 2015-2019, breast cancer rates increased by 0.6-1.0% each year (Siegel, et al., 2024). Anyone diagnosed with cancer or who knows someone diagnosed with cancer can tell you it can be a terrifying and life-altering situation. Cancer survivorship begins at the initial diagnosis and continues for the rest of life (Duijts & Spelten, 2021). Cancer survivors may need a variety of medical, physical, and psychological treatment and support. Initial medical treatments like surgery and chemotherapy may be just the beginning of a long road of treatments, side effects, and physical, social, and emotional changes. Many studies have shown that both physical and psychological needs of cancer survivors are often unfulfilled, but peer support can help.

The Unmet Needs of Cancer Survivors

Cancer survivors often have unmet needs that are both physical and psychological. Physical needs that may go unmet can include things like increased fatigue, pain, and difficulties completing everyday physical tasks (Shahsavar & Choudhury, 2023). Changes in sexual function and breast reconstruction needs are also common physical needs of survivors (Barr et al., 2020). A lack of access to care and support is another common challenge for cancer survivors, especially in rural or remote locations. If providers or facilities are too far away or wait times too long, survivors may not get the help they need. Telephone-based support can help in these situations (Duijts & Spelten, 2021). Side effects of cancer treatments can also cause ongoing physical problems that survivors may need help with. Nausea, hot flashes, lymphedema, and sleep abnormalities are just a few of the physical side effects survivors may suffer with (National Cancer Institute [NCI], 2021). Physical needs can often lead to increased stress, anxiety, and distress.

Psychological or emotional unmet needs may be continued stumbling blocks that cancer survivors must navigate throughout all stages of the cancer journey. Cancer survivors typically have end-of-life concerns and need to make decisions, even if the prognosis for survival is good. Spiritual or religious support for how to deal with these issues may be needed (NCI, 2021). Resilience in cancer survivors can be reduced over time if patients lack trust in their treatment plan or providers (Duijts & Spelten, 2021). Throughout survivorship, the fear of a cancer recurrence is another challenge that survivors may face (Ulibarri-Ochoa et al., 2023). That fear can always be present, but may be especially heightened when any new pain, lump, or health problem arises. Cancer survivors may need to learn to accept a “new normal” (Ulibarri-Ochoa et al., 2023). Survivors may also need help learning how to talk to others, especially family members and children, about their breast cancer (Barr et al., 2020).

Perhaps the most common and debilitating psychological unmet need of cancer survivors is distress, anxiety, or even depression. The diagnosis, treatment, and unmet needs of a cancer diagnosis can all contribute to anxiety and distress in cancer survivors (NCI, 2020). Anxiety can be defined as unease, fear, or dread caused by stress. Distress can be emotional, mental, social, or spiritual suffering. People who are distressed can experience anxiety, depression, panic, and isolation (NCI, n.d.). Distress and anxiety can lead to a decreased ability to provide self-care during survivorship (Shahsavar & Choudhury, 2023). Cancer survivorship can last for many years, and over time this distress and anxiety can become chronic.

Chronic stress is defined by the American Psychological Association (2022) as stress that is constant and persistent over an extended period of time. This chronic stress can be debilitating and overwhelming. Of note, chronic stress has been found to cause a lowered immune response, reducing the body’s ability to fight off disease. It also causes increased inflammation which is linked to many diseases and some types of cancer (Antoni & Dhabhar, 2019). Overall, chronic stress has been linked to an increased risk of cancer and poorer cancer survival (Yun-He et al., 2020).

The Value of Peer Support

Peer support is an important resource for cancer survivors and has the capacity to help with many unmet needs, from countering isolation to helping patients talk through treatment side effects with someone who understands. Peer support can be defined as help provided by a person or people who have the same disease and connect with the patient to exchange information, share experiences, and offer encouragement (Park et al., 2019).

A number of research studies have found that peer support has significant benefits for cancer survivors. Results show peer support significantly reduces mental distress and increases resilience in cancer survivors (Shahsavar & Choudhury, 2023). Peer support can lead cancer survivors to be more active in self-care and self-management of their condition. Such support empowers survivors by enabling them to feel, “If they can, so can I.” This kind of support allows survivors to share their feelings with people who understand (Ulibarri-Ochoa et al., 2023).

Peer support also benefits patients’ decision-making skills, as sharing of information between peers increases knowledge about the disease, treatments, and coping skills (Kowitt et al., 2019). In addition, a study by Park et al. (2019), showed that cancer survivors turn to peer support to gain information or knowledge about their disease and treatment. This was even true in survivors who were more than five years out from their original diagnosis. Kiemen et al. (2023) found that peer support cultivated hope in cancer survivors, helped to normalize living with cancer, and improved quality of life. Peer support can also improve feelings about sexuality, coping skills, and overall emotional health (Lee & Suh, 2018).

ABCD’s One-to-One Peer Support Model

ABCD: After Breast Cancer Diagnosis is an international breast cancer organization that provides customized one-to-one support that addresses many unmet needs of breast cancer survivors.

ABCD provides free, non-clinical, emotional support for men and women all over the world who have been impacted by a breast cancer diagnosis. Founded in Milwaukee, WI, in 1999 by the late Emmy-award winning journalist Melodie Wilson Oldenburg, ABCD seeks to nurture hope and restore confidence in anyone affected by breast cancer. Working as a complement to medical care, ABCD’s signature service is creating a unique match between someone who needs support and a volunteer ABCD Mentor who not only shares a similar diagnosis and treatment plan, but also has similar ages, common interests, personal characteristics, career paths, and family dynamics. This customized matching is possible because Mentors come from all stages, ages, and backgrounds. All services are free and virtual, and are available at any stage of diagnosis, including metastatic, with ABCD also supporting male breast cancer patients, younger patients, care partners, previvors, underserved communities, LGBTQIA+, and Veterans. ABCD Participants can have multiple Mentors, especially if they are trying to make decisions on treatment and whether to pursue breast reconstruction. ABCD’s services are available from the moment of diagnosis, through treatment, and into survivorship (After Breast Cancer Diagnosis ([ABCD], n.d.).

Mentors and Participants coordinate how they would like to communicate. This can be phone calls, texting, Zoom or FaceTime video talks, face-to-face meetings if they live in the same area, or any combination of these. Mentors are breast cancer survivors who are at least one year past completing treatment (with the exception of hormone replacement therapy), living with metastatic/stage IV disease, or a friend, family, or caregiver of a breast cancer patient. All Mentors are comprehensively vetted and trained (ABCD, n.d.).

Anyone can request support and be matched with an ABCD Mentor by visiting ABCDBreastCancerSupport.org and clicking “Get Matched,” or by calling 1-800-977-4121. The support at ABCD is always free. ABCD also invites breast cancer survivors, people living with metastatic disease, and care partners to consider becoming Mentors by clicking on “Become A Mentor” or calling the phone number above to start the process. Healthcare providers can also refer their patients to ABCD to get support.

Breast cancer survival can be a frightening and difficult journey, but with ABCD’s one-to-one peer support, no one is ever alone.

About Michele Juliano, RN

Michele is a Registered Nurse, ABCD Mentor since September 2022, and breast cancer survivor. She is passionate about supporting her fellow cancer survivors, health promotion, and disease prevention. Michele was diagnosed with invasive ductal carcinoma in December 2020, and had a double mastectomy with aesthetic flat closure in February 2021. Her breast cancer was hormone positive, so she continues treatment with aromatase inhibitors. Michele lives in Pennsylvania where she enjoys spending time with her family and chihuahua, Junebug.

REFERENCES

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