Memphis, TN—During the first day of the Fourth Annual Navigation and Survivorship Conference of the Academy of Oncology Nurse Navigators (AONN) in Memphis, Tennessee, the meeting co-chairs, Lillie D. Shockney, [ Read More ]
June 2014 VOL 5, NO 3
I Get By with a Little Help from My Friends: The Role of the Support Group in Breast Cancer Survivorship
Wow, those meetings must be sober events.” I’ve gotten this and other similar comments regularly over the past 6½ years since I received my diagnosis of stage III breast cancer in 2007. Fortunately for me and many other women, the assumption couldn’t be less accurate.
Mind you, my support group meetings aren’t nonstop laugh riots, but neither are they gloom-and-doom fests. My sisters help me gain perspective as I navigate the road of the survivor. I think the Merriam-Webster Dictionary hit the proverbial bull’s-eye, because its definition of “support” includes, as a noun, a “thing that bears the weight of something or keeps it upright,” and as a verb, “to keep from fainting, yielding, or losing courage.” My support group has personified these qualities and much, much more.
Despite the sad statistic that more than 232,000 women will be diagnosed with invasive breast cancer in 2014 in the United States (ww5.komen.org/breastcancer/statistics.html), one can feel awfully alone when one is first diagnosed. The unknowns and the fear that accompany this life-changing news are enough to drive one crazy—or at least cause serious sleep loss. But there’s a superstatistic too: the growth of breast cancer support groups points to the happy fact that there is a growing need for survivor services, because there are a growing number of survivors.
Support groups help with, first and foremost, the questions that everyone from the newly diagnosed to the seasoned survivor has: What do ductal carcinoma in situ, invasive ductal carcinoma, inflammatory breast cancer, triple negative breast cancer, HER2/neu-positive status (and countless other terms reminiscent of an especially terrifying Latin class) mean? Whom do I listen to first (concerned loved ones, nurse navigator, oncologist, radiologist, or acupuncturist)? How do I internalize and comprehend this diagnosis myself, let alone explain it to family, friends, and acquaintances? How will I handle chemotherapy, radiation, and other treatments? How can I start healing, emotionally and physically, from surgery? Should I undergo reconstructive surgery? How do I begin to make the daunting ascent out of this experiential abyss and attempt to sculpt a “new normal” life?
This is exactly where my support group, dubbed the “Young and the Breastless,” or Y&B for short (who says we don’t have a sense of humor?!) comes in. Aside from being a group of women to whom you don’t have to explain much (unfortunately, they understand), they’re allies who welcome newbies into the fold, share their feelings and experiences, and plain-old disseminate hope.
When I went to my first support group meeting, I was newly diagnosed, had 2 young children, and was, to put it mildly, petrified. Breast cancer equaled death. It meant bald women, like the one I’d seen just a few months before at a holiday party, whom, I’m ashamed to say, I was afraid to talk to and avoided.
In fact, when I first took my place at the local restaurant’s table these warriors graced, I could barely speak. I clearly remember sputtering, “Is this the…the…meeting?” semicoherently. I couldn’t even utter the words “breast cancer” out loud. After sitting down, I got the first 2 syllables of my first name out before I broke down sobbing.
They didn’t stare at me aghast, as I would have; they put their arms around me, shared their amazing stories, and enveloped me in understanding, which was so validating and desperately needed! Cancer survivors definitely deal with a very real form of PTSD; like veterans or crime victims, breast cancer survivors benefit from the therapeutic gifts of sharing their experiences and developing coping skills unique to their realities.
My support group has also been an amazing example of the “pay it forward” principle. One day it occurred to me that I was no longer the “new one.” I, along with the others, were now ushering in frightened women who sought connection with others who understood.
Support groups come in all shapes and sizes, and, as with that elusive pair of comfortable and chic jeans, I advise trying on a few before you commit to the purchase. What makes a support group able to successfully serve its members? Like a succulent culinary dish, it requires essential ingredients, with no substitutions allowed.
The first is a skilled facilitator. My group’s is like a mother to us; she was the staff social worker from my oncologist’s practice, but then she retired. We loved her so much, and she us, that she stayed with us even after her professional career ended—a true gift. She sees to it that new members feel welcome, helps keep us focused and (loosely) organized, invites speakers to meetings who discuss everything from clinical trials to integrative healing modalities, and, possibly most importantly, ensures that the group is a safe and nonjudgmental place to share.
That said, there’s no “right” way to “do” cancer. No member should feel obligated to contribute in a certain way or a required amount during a meeting. Our breast cancer journeys are as different as our individual selves, and so too are our internal lives and struggles.
Another requirement that’s decidedly simple sounding is the chance for members to witness survivorship up close, to really see what it looks like.
I assert that what women need most when they’re first diagnosed is simply witnessing other women who’ve been in the same place and come from relatable life circumstances. In my case, I needed, quite simply, to see women who were alive. In Asheville, North Carolina, where I live, my support group formed because more and more younger women, often with young children, were being diagnosed. The only support group that existed years ago had a membership that consisted primarily of postmenopausal women who more than likely had adult children helping them through their breast cancer experiences. Younger women with young children have very different needs in terms of support, so a younger survivors group was born. Members could then talk to each other about issues unique to them, like how to explain a cancer diagnosis and treatment to children at varying developmental levels, how one’s marriage might be affected, and, very importantly, how to ask for and receive help, from emotional support to meals and child care.
As a result of our accepting philosophy, my group’s “all over the place” politically, religiously, and in many other ways. Nevertheless, we respect each other’s views and communication styles, and we honor each other’s experiences as singular and equally valuable. We offer suggestions and advice in nonpushy ways, and, not unlike a 12-step meeting, we encourage members to “take what you like and leave the rest.” Each member is acutely aware that everyone’s case is different; hence, we rarely, if ever, utter or hear the words “You should.” Our typical conversational hallmarks more often sound like this: “What helped me in that situation was…” or “Have you considered…?”
Now back to the decidedly nonsober mood of the meetings. I’m happy to report that there are, consistently, lots of laughs and hugs! Sure, we have times of happy and sad tears, but our group shares a special humor because we have walked the same path, albeit via different routes. And hugs are not only healing, they’re free! There’s a palpable joy that emanates from a group of people who have dealt with or are still dealing with the specter of breast cancer.
My own experiences, as well as conversations with many survivors, reveal that, especially after the shock of diagnosis and the intensity of the treatment phase (for some, treatment will never end), we are often left very confused about what to do next. We frequently reassess everything about our lives, from our careers and volunteer commitments to our friendships. I’ve been the lucky recipient of an extraordinary combination of guided peer support, interaction in a nonclinical setting, and simply talking with women who “get it.” After all, even our loved ones either don’t understand our experiences fully—how can they?—or we worry about boring or alarming them with what may seem like endless “cancer talk.”
I’ve got some stories, too, of valuable lessons learned from long-term survivors and women living with cancer and how this is an instance in life when it decidedly does not pay to compare myself to others. My support group serves to remind me, every time I start feeling sorry for myself (and I believe that everyone, cancer or not, deserves to indulge in the occasional “pity party”; I think it’s therapeutic!), that my worst day is someone else’s best, that every member knows the anguish of awaiting test results, and that loyalty and love are priceless.
I remember that, when I was fairly new in my group, we all participated in a wonderful Relay for Life event at a local high school, whose beautiful campus is nestled in the mountains that define our region. At this point, I was healing from 2 surgeries, was smack-dab in the middle of chemotherapy, and was pretty much shell-shocked. As we walked, my support group sisters, literally and figuratively, held me up as my emotions overcame me: the throngs of perfect strangers cheering us on, the concentrated energy of so many fighting for a cure, the natural beauty surrounding us. Amazingly, at the end of the Relay laps, we looked up to see a stunning double rainbow! Was it a mere coincidence? I think not!
As Margaret Meade so aptly said, “Never underestimate the power of a few committed people to change the world. Indeed, it is the only thing that ever has.” My Y&B posse, for me, has been just such a lovingly committed group of “Wonder Women.” I’ve gained healing, wisdom, and strength since my diagnosis, all made priceless by the gift of connection.
The following clinical trials are currently recruiting patients with colorectal cancer for inclusion in several investigations. Each trial description includes the NLM Identifier to use as reference with ClinicalTrials.gov. Adjuvant [ Read More ]