By: Rebecca Sharp, NLN-LSAP Graduate, LANET Chair, Knoxville, TN
Breast Cancer! The dreaded diagnosis. A whirlwind of surgery and treatment followed quickly, so quickly that I did not have time to think. I am an educator and firmly believe in learning as much as I can on a subject I am facing. My “cancer team” gave me a lot of information. I felt I was becoming fairly knowledgeable about my type of cancer and breast cancer in general. I was told about a local center that had support groups for cancer patients.
Two weeks after radiation, my arm felt achy and very heavy. I then noticed swelling. My breast and trunk ached and felt swollen. I probably would have ignored it, as I had not even heard the word “lymphedema” pre-surgery. I had stumbled upon the term and what lymphedema was when reading about cancer; I found the Stepup-Speakout.org site and read about it.
My surgeon did not think I had lymphedema because I had a sentinel node biopsy during surgery. My radiologist said one did not get lymphedema from mammosite radiation. My surgeon did make a referral to a lymphedema therapist to check it out. I did have lymphedema—stage 2! I entered a whole new world, a world in which it seemed the only one knowledgeable about lymphedema was my lymphedema therapist!
The cancer was behind me. Now all of my searching was in the world of lymphedema, a condition which was not going away. Breastcancer.org has a lymphedema thread that I avidly followed. I joined the National Lymphedema Network and read all of the articles online. The Ohio State University had a Lymphedema Summit Conference, which I attended. An NLN-LSAP patient on breastcancer.org encouraged me to apply for attendance as an LSAP patient at the 2012 NLN Conference in Dallas. I did so and was accepted! My therapist was also in attendance. I learned so much at the conference. Lighthouse Lymphedema Network has a yearly conference in October. I attended the 2012 conference. Lymphedema Awareness Day in Johnson City was in June 2013. My knowledge of lymphedema was, and is, constantly growing.
As I was becoming more knowledgeable, I found no support for lymphedema like I had for cancer. It was a lonely—plus highly visible— journey, with three months of bandaging and now daytime garments. During my Complete Decongestive Therapy (CDT), I kept asking if there was a lymphedema support group in the area. My lymphedema therapist said there wasn’t one. When I said I would like to start one, she encouraged me to form one. I learned that two other lymphedema patients had approached a local cancer center, and they had agreed to sponsor a support group. I was asked to join them in their efforts. Our first monthly meeting was in January 2012. We named ourselves The Lymphedema Awareness Network of East Tennessee (LANET). We meet monthly and have had a variety of presentations. In July 2013, we broke away from the cancer center, formed a board of directors, and started meeting as an independent organization at a local library meeting room. We have a core group of regular attendees, including therapists. We are slowly growing in numbers.
I have found that starting and maintaining a support group is not an easy task. It is difficult to get advertising out to the community; providing topics that pertain to all types of lymphedema has to be a focus. How do we reach lymphedema patients who are not in active treatment and might want to attend?
What are our goals for LANET? First and foremost, we are there to provide a supportive environment for each other, whether we are in intensive treatment or in the self-management phase. We provide a forum for those with expertise in treatment of lymphedema to educate us on the challenges of daily lymphedema management. We want to promote awareness of lymphedema and treatment to the public and medical providers. Last, but not least, we want to become highly vocal advocates in the education and treatment of lymphedema. Eventually, we would like to become a non-profit organization and raise funds to assist in providing garments for those who cannot afford to do so.
I encourage every lymphedema patient to consider joining or starting a support group. I find I get more out of the group than I give. If every area of our country had a support group with advocates working to provide knowledge and appropriate treatment for lymphedema, big changes in lymphedema outcomes could be made.
rssharp100 [at] att [dot] net (rssharp100 [at] att [dot] net)