The power of support: How peer networks shape reconstruction experiences for breast cancer survivors
For women who have been recently diagnosed with or are actively treating breast cancer, it's common to feel lost, confused and completely overwhelmed. Hearing the words "breast cancer" can instantly stop the world and leave women feeling despair. The diagnosis itself is the first step in a long and challenging process of battling breast cancer, one that can involve mastectomy and breast reconstruction along the way.
Many women who have received this diagnosis have no idea where to start their treatment, who to ask for help or what steps to take to ensure that they are well-informed and well-supported from the start. They are simply overwhelmed and unsure of where to turn for much-needed guidance and support.
This crucial area of support is where peer networks can step in and help reshape their world and experiences as they battle and survive breast cancer. These networks are an extremely valuable tool for breast cancer survivors that can provide resources for local surgeons for breast reconstruction as well as lend a listening ear.
To gather more insight on the importance of peer networks within the world of breast cancer and breast reconstruction, we've reached out to Mary Lester, MD, as well as Terri Coutee, founder of the nonprofit DIEP-Cjourney Foundation, for their expert insights and real breast reconstruction patient testimonials.
The importance of peer networks and support
Being diagnosed with breast cancer can be an isolating and overwhelming experience for any woman, especially when it comes to the process of breast reconstruction. It's easy to not know where to begin pursuing breast reconstruction and other options when faced with a difficult diagnosis and treatment.
Family support is essential, but loved ones should not be a woman's only resource for support when working through breast cancer and breast reconstruction. It is beneficial to also have a support group of women who have had a similar experience and can truly understand the emotions, pain and isolation that you may be experiencing.
It's encouraging that there are more resources available today than even 10 years ago thanks to the popularity of social media. It's now easier than ever to connect with women who have gone through breast cancer and reconstruction and can provide you with insights and support.
"One of the things that I talk about frequently with patients is that I love the breast cancer community," said Lester. "Unfortunately, breast cancer is so common that there are a lot of support groups and resources out there."
Coutee started her own support group for women seeking support in their breast reconstruction journey after realizing there was a need for such a global community during her own journey.
"I was diagnosed with breast cancer for the second time in 2014. At the time, I had no support, and it was a feeling of isolation and being overwhelmed," said Coutee. "After finding a well-qualified microsurgeon to perform my DIEP flap, I became part of their community of women who supported each other through breast reconstruction. However, I soon realized there was a global need for this assistance. In 2016, I opened the DIEP-Cjourney Foundation to provide this much-needed support. Now, through the collaborative efforts of surgeons, patients and those serving people affected by breast cancer, a goal is realized to provide education and resources to those affected by breast cancer. Each day, the feedback I receive from the breast cancer community drives the mission of the Foundation to provide this support."
In addition to pursuing peer networks for support, the American Society of Plastic Surgeons also offers a plethora of information about breast reconstruction as well as a list of surgeons who are certified to perform the procedure.
"I really like the American Society of Plastic Surgeon's website – they have a breast reconstruction site," said Lester. "It's also really great because it hooks you up with plastic surgeons that are board-certified. There aren't a lot of people who do breast reconstruction that aren't board-certified, but you can run across this. I'm a big proponent of seeing someone who is actually certified versus someone who might not have the training."
Patient testimonials regarding the importance of peer networks
To help further our insight into the importance of peer networks in breast reconstruction following breast cancer, Coutee gathered input from her online community, DiepCJourney ~ Breast Reconstruction after Mastectomy. Here is what community members had to say:
"It is absolutely invaluable to have the support of women who have gone through breast cancer treatment and reconstruction. They serve as a vast and wonderful resource. They know what you're feeling and can walk you through the journey." – Kathie
"I was single, lived across the country from my family and in my mid-30s, but not alone with the support I found. It is truly a comfort to have your feelings validated by women who are on or were on the same journey. It made everything less scary!" – Kristine
"What a blessing to have this group of thousands of women, all at different places along the road, to answer questions, share progress, give reassurance when weird symptoms and pains pop up, and especially to those who have continued to check in here long after your journey is over to give hope to those coming along behind." – Maren
"I found this group very helpful as well as an Australian group – Breast Cancer Network (I am in Australia). Got lots of practical tips as well as the comfort of knowing how many ladies had gone there before me." – Julie
"I am almost three years post DIEP. My online support group was where I felt safest to share the deepest, ugliest and most frightening aspects of this process without burdening my already stressed family. This is why, now, I returned to be a voice of experience and share my journey. All journeys are as unique as each person, but it helps to hear there is life after." – Nancy
"Recently diagnosed, I was immediately given an outside cancer group for support, but to be honest, a few Facebook breast cancer groups is all I have needed to ask all my questions, learn and hear other journeys before me. And I've been able to do it all from the comfort of my home as I heal from my surgeries! I am and will be forever grateful for these amazing groups and women." – Terri
"This group and others were very helpful as I navigated through the journey. Knowing that I am not alone was a comfort and source for questions to ask. Thanks to all who were there for me over the last four years, know we are here for you." – Donna
"I am lucky to have a supportive husband and lots of friends. But I have found throughout this process that I've felt alone in my daily life, even when I haven't truly been alone physically. In these online groups, I have met women going through exactly the same thing as myself, at exactly the same time. We have been able to support one another in each decision we've made along the way, from making decisions regarding how we treat our specific cancer and which reconstruction surgeries we choose and why. Locally, my friends and I have been able to share information about which surgeons and physical therapists we go to and share various items like walkers and recovery shirts. We have supported one another in making decisions about everything from nutrition to comparing stories about expanders and wound healing. It's also given me an outlet to discuss issues surrounding breast cancer and reconstruction that others in my life don't understand. I have made several good friends through DiepC and a DCIS specific Facebook group, and I have actually met in person with a few of them. I don't know how I would have survived this time without these wonderful groups & these amazing women." – Jill
Finding community in your breast reconstruction journey
After a breast cancer diagnosis, it's easy to feel isolated and alone, no matter how many friends or family members you have surrounding you.
You can get the support that you need from women who have been through exactly what you are experiencing by enlisting the help of a peer network. It can guide you along your journey with a unique understanding of the emotions that you are feeling throughout the process.
To find a qualified plastic surgeon for any cosmetic or reconstructive procedure, consult a member of the American Society of Plastic Surgeons. All ASPS members are board certified by the American Board of Plastic Surgery, have completed an accredited plastic surgery training program, practice in accredited facilities and follow strict standards of safety and ethics. Find an ASPS member in your area.