Three Reasons Why I Feel Uncomfortable Joining Breast Cancer Support Groups
I'll never forget the day I was first diagnosed with breast cancer. I halfway expected it because of the growth I found under my right breast that seemed to pop up overnight, and the fact that my mother passed away sixteen years prior from metastatic breast cancer. Surprisingly enough, the first person I called was my boss at the domestic and sexual violence center where I worked as a full-time victim advocate. I cried over the phone with her and told her how frightened I was. Marie, being the positive person she is, tried to encourage me. "You've got this, sister," she exclaimed. "We're all behind you, no matter what!" I felt relieved, knowing that my work family would have my back and that I wouldn't lose the job I loved.
Breast cancer support group
My family was equally encouraging and hopeful that we were going to beat this thing. During the course of my treatment, I joined a breast cancer support group and found what I needed to get me through the awful year of chemo, surgery, and radiation. The group was positive and full of long-time survivors of breast cancer. I was determined that I would be like them; that I was going to beat this and it would never raise its ugly head again.
That was three years ago, and I had no idea that it would come back on me so soon and with such a vengeance. We didn't catch it in a routine oncologist visit, but in an ER visit due to extreme pain in my lower back and right shoulder. My ER doctor familiarized herself with my history and suspected something wasn't right. She ordered X-rays and found a "suspicious spot" on my shoulder. She sent the results to my oncologist who ordered full body and PET scans. When he told us that it had spread throughout my bones in my lower back, my shoulder, skull, and on my liver, my wife and I were devastated. We cried, and so did my oncologist. No one saw this coming, at least not this fast. I kept thinking "BUT I BEAT THIS!" When I returned to my support group the next week and told them, you could have heard a pin drop. The faces of the women who were in the early stages instantly froze in horror. I knew they were thinking, "what if that happens to me?" The tone of the rest of the meeting of our usually lively group was quiet and somber. It was then that I decided that I couldn't return to my support group because it was clear that they weren't prepared for the bad news.
What I learned through the experience
- Most breast cancer support groups are structured around encouragement of early-stage patients with a goal of being cured – Early stage breast cancer patients aren't ready to hear that their cancer could come back on them and aren't prepared for the bad news that one of their own faces fighting cancer for the rest of their lives with a small chance of a good quality of life or long term survival.
- MBC patients have different support needs than early stagers – MBC patients are now facing a different reality than before. They have different concerns which include questions about how long or if they will be able to continue to work, what treatments are most convenient and will give them a good quality of life while keeping the cancer controlled, is it possible to go into remission, and how to plan for the future needs of their families if they don't survive.
- MBC patients can have many more bad days than good, making it difficult to schedule ahead of time – Most breast cancer support groups meet only once a month on a certain day and time. MBC patients may or may not be able to make those meetings depending on how they're feeling. Often they miss out on several months in a row because they're having a bad day. An effective MBC support group should be more flexible, offering online participation, and flexible meeting times, maybe several days a month, making it easier for the MBC patient to attend and get the peer support they need.
Metastatic breast cancer is a different disease
The bottom line is that MBC is a much different disease than early-stage breast cancer. The patients have different needs and priorities. Unfortunately, most breast cancer awareness and support groups focus primarily on early-stage breast cancer that leaves the MBC patient without the peer support they need to help them work through their fears and effectively navigate the maze of choices and decisions that have to be made in the critical stages of their disease. Hopefully, more emphasis will start being placed on MBC patients and their needs to make their lives more comfortable and fulfilling.
Editor’s Note: We are extremely saddened to share that on Thursday, June 24th, 2021, Lynette Erwin Waller passed away. We know that Lynette’s advocacy efforts continue to reach many. She will be deeply missed.
Do you have a safe space where others understand what you are going through?