Go backStepping Up: Notable New Strides in Breast Cancer Support
A two-part series on the continuing evolution of support groups.
Like a fingerprint, each breast cancer diagnosis is unique. From the tumor’s type and progression to its treatment strategy and eventual outcome, no two women will share exactly the same experience. One thing they will share, however, is the fundamental need for support throughout their journey.
A generation ago, when long-term breast cancer survival rates were low and less was known about the disease, women had limited resources for information and emotional support beyond their inner circle of physicians, family, and friends. The stigma of feeling different – set apart – naturally led to feelings of isolation, depression, and anxiety in addition to the physical pain associated with the disease.
Thankfully, today’s breast cancer prognosis and survival rates are much greater, as are the options for women seeking assistance. From traditional face-to-face support groups to telephone hotlines, individual therapy, Internet forums, social media, radio shows, podcasts, blogs, and more, you’ll find a support match for virtually every personality.
Strength in numbers
If you value strength in numbers and crave peer connections, group support may be a perfect fit. Today’s in-person sessions can strengthen your body, mind, and emotions, with research studies demonstrating lower levels of stress and anxiety and healthier immune systems for participating women.
Instead of a one-size-fits-all approach, most support groups offer services tailored to specific issues or interests. Some may be organized according to stage of cancer experience, acknowledging that concerns for the newly diagnosed will differ from the needs of someone with a recurrent cancer. Others may target young women with particular questions related to children and fertility.
Open membership groups allow you to attend meetings freely and can be a good choice if you are unable to commit to regularly-scheduled sessions. Patients seeking consistency and personal relationships, however, may prefer the structure of a registered group. In this setting, you’ll commit to a certain number of sessions, getting to know other members and sharing more complete support. Another option is therapy groups. Led by a mental health professional, these group counseling sessions teach beneficial coping skills to those with particular issues – such as depression or divorce – surrounding their cancer experience.
Women seeking concrete medical information often are attracted to educational intervention groups. Here, health experts speak on a variety of cancer-related topics, such as intimacy or nutrition, with a question and answer session following the presentation. If you find it hard to talk about your feelings, you may discover that discussing a specific topic makes it easier to open up. And having more information about your disease can provide a better sense of control in your daily life.
A personal choice
Of course, group participation may not be your thing. You may prefer to process your feelings privately or even anonymously. Or you may live in an area without any organized support options. Fortunately, a world of options exists for people like you.
Even in smaller communities, individual counseling is usually available. There are psychiatrists, social workers, psychologists, and other types of therapists who work exclusively with cancer patients. Your health care team can help identify those who may be a good match for your situation. Check with your health insurance company, too, as it can be an unexpected source of support. Some will assign you a case manager who is also a nurse or social worker skilled in cancer care.
Telephone support groups are popular for those seeking personal connections and one-to-one support without leaving home. Hosted by trained professionals, they communicate by scheduled conference call and can be just as diverse as face-to-face groups. These can be a great option if you are physically confined yet still seek human interaction, since despite their relative anonymity many participants contact each other in between sessions to exchange individual support. Your hospital or clinic can provide a list of telephone support resources, and you can find lots of options through cancer-related Web sites like CancerCare (www.cancercare.org) and the Advanced Breast Cancer Community (www.advancedbreastcancercommunity.org).
Sustaining the soldiers
Today many resources exist for those helping a wife, partner, mother, daughter, or friend through breast cancer. One example is Mothers Supporting Daughters with Breast Cancer (www.mothersdaughters.org), an organization matching mothers with a volunteer whose daughter is close in age, has the same type of cancer, and is undergoing the same type of treatment. Support is available by telephone, email, letter, and occasionally in person. Similar programs for patients, spouses, friends, and other family members are available through Network of Strength’s YourShoes 24/7 Breast Cancer Support Center (www.networkofstrength.org) and through Susan G. Komen for the Cure (www.komen.org).
As the youngest casualties in the cancer war, children of adult patients require particular attention. And because kids are less able to verbalize their feelings, specialized support groups provide a safe place for them to express grief, ask questions, and meet other children with cancer in the family. Professional facilitators encourage interaction through play, drawing, and games, so be sure to ask for their feedback about your child’s participation and any special family needs. And don’t forget to talk with your child’s school early on. A favorite teacher or coach may provide additional coping tips or suggestions for local therapy options.
The road ahead
It’s important to remember that a patient’s need for emotional support doesn’t end with their last treatment session. Fear of recurrence, dealing with the residual effects of treatment, and seeking a “new normal” make up the “post-treatment syndrome” that many women experience. Sharing with fellow survivors who have been there can help.
Ask someone on your health care team if there are any cancer survivor support groups in your community. Organizations like Living Beyond Breast Cancer (www.lbbc.org), Network of Strength, and SHARE (www.sharecancersupport.org) offer telephone and email helplines staffed by trained peer counselors who are also breast cancer survivors. By matching you with a survivor who had a similar diagnosis or life experience – you’ll talk with someone who really understands your concerns. These hotlines also offer assistance to women in all stages of cancer care, their families, caregivers, and friends, so don’t forego these valuable resources if you haven’t yet reached your treatment goal.
Finally, many women find that one of the best ways to move on from their breast cancer experience is to help other women through their journey. Volunteering as a cancer survivor at the hospital where you were diagnosed and treated, or through a hotline, Internet forum, or local support group can be incredibly rewarding and emotionally healing – allowing you to translate a life-altering experience into a benefit for others. You can start by searching for volunteer opportunities in your area through the Network for Good (www.networkforgood.com) or the American Cancer Society (www.cancer.org).
Whatever resource you choose, it’s crucial to build a network of support during and after your treatment. An Internet search will yield a wealth of information on breast cancer support services. After all, no one understands breast cancer as well as another patient or survivor, and contact with others is one of the best ways to break through the isolation and despair of the disease.
Click here to read the second article in this series on the evolution of breast cancer support services. It's an in-depth look at some 21st-century sources of support, including Internet forums, social media, podcasts, and more.