Meeting others, learning tips, hearing from docs: breast cancer patients have it all when they get together.
If someone really wants to get under my skin, they'll tell me I'm lucky I have the "good" cancer with my diagnosis of breast cancer. I don't believe any cancer is a good cancer and, fortunately, I've been told that only once to my face. But it's true that marketing, the sheer number of people with breast cancer and their impacted friends and family, and the rise of patient engagement has made something good out of a bad: the breast cancer patient conference.
The first time I went to a patient-focused conference, I was about six months into living with metastatic cancer. A local community-based center (Hinsdale, IL's Wellness House) advertised a day about breast cancer, with presentations from medical professionals, lunch and discussions specific to metastatic breast cancer in the afternoon. I signed up not knowing what to expect.
That initial foray into the world of patient-focused conferences was a little daunting since I didn't know anyone and, compared to most of the others in attendance, I didn't exactly fit the demographics (despite being 50, I was younger than all of the other people in the metastatic forum I attended, for instance, and most of the early-stagers as well) but I left feeling more informed about cancer in general and my care in particular.
More importantly, I left feeling less alone.
Although I want to learn all the science I can, for me the point of a patient-focused conference is to connect with others, to acknowledge that any stage of cancer does a number on the people who live it. It's a special experience to enter a space where the focus is on supporting yourself and others like you as you all learn together how to live with cancer and its effects.
I felt so exhilarated after that first one-day conference that I signed up for a much larger one in Philadelphia. This one, held annually by Living Beyond Breast Cancer, had metastatic breast cancer as its focus. LBBC also holds a popular conference for all stages each year, but their metastatic breast cancer conference has become an invaluable resource for people with metastatic disease — a place where ages, backgrounds, experiences and personalities come together to grow stronger and more connected.
LBBC does many things right to make this conference one that unites people and encourages new friendships. A perfect case in point is something that happened during the second year I went: A young woman stood alone in the doorway as dinner was wrapping up, but she was noticed by someone there who grabbed her hand and led her to a table with others who spent the evening introducing her to as many future friends as possible. A good conference has this kind of welcoming atmosphere. It doesn't seek to keep those who know each other separate from those who are new. That kind of atmosphere says, "We are all in this together."
This year's LBBC Conference on Metastatic Breast Cancer is appropriately titled "Thriving Together" and runs from April 5 to April 7. Registration is open now and there is still a chance of receiving a grant for travel, lodging, and/or registration costs. The First-Timers Meet-Up is making its second appearance and leads right into the opening night's dinner and evening of relaxation activities (such as eating desserts, making an essential oil and learning mindfulness techniques). Speakers during the sessions include medical oncologists, researchers and therapists; what you focus on, whether science, self-care, exercise and diet, or relationships, is up to you. The schedule is packed with good topics and excellent speakers so you'll head home with resources you knew you needed and plenty you hadn't even considered until you saw what a difference they could make.
If such a big conference isn't your style or if you have another type of cancer, I urge you to look around your community and state for programs that meet what you need now. There are many patient advocates and organizations that seek to help you find a way to live better with and beyond cancer.