Updated: Nov 10, 2019
Each year the Living Beyond Breast Cancer (LBBC) organization hosts an extraordinary conference. This year's theme was “Sharing Wisdom, Sharing Strength”. There were over 400 attendees, 4 dozen exhibitors, 4 pre-conference networking opportunities, and 11 sessions, all packed into a day of learning in Philadelphia, PA. Some of the topics I’d like to highlight here are: Sex and Intimacy, Connections, Late Stage Breast Cancer, and Knowing Your Body.
Sex and Intimacy was a hot topic that bubbled up among younger woman and early stage breast cancer patients. We hear all the time from younger women diagnosed with breast cancer that they have a unique set of challenges, questions, and experiences. Their concerns differ compared to older women who have been diagnosed with breast cancer and who have had the opportunity to start a family and may have already gone through menopause. Being thrown into menopause, due to chemical/hormonal treatments (such as Zoladex, Tamoxifen, or any of the aromatase inhibitors accompanied by a Lupron shot), may hasten several deleterious side effects, I.e., hot flashes, bone loss, weight gain, and vaginal atrophy.
These recurring issues invite us to take a deeper dive, build a community around like-minded individuals, and offer resources and support. We were most fortunate in that we were able to record a podcast with notable Breakout Session Speaker Dr. Monique Gary, DO, MSc, FACs on this most apropos subject matter. This podcast will be available on “Breast Cancer Conversations” in the coming weeks (found by searching ITunes, Spotify, SoundCloud, etc).
Following the LBBC Conference, we hosted a Breast Cancer Survivor/Thriver brunch where we got to meet a number of women under forty who opted not to harvest and preserve their eggs. This was due primarily to their cancers being so aggressive and their oncologists suggested starting chemotherapy immediately. It's a very personal choice for everyone. No regrets were expressed and most held onto the acceptance that there are other ways to start a family. For those of you who are looking to start a family, it is important to have this conversation with your oncologist and fertility team so that you can plan ahead and make the best decisions for you. If the question about family planning doesn’t come up in your initial conversation, bring it up! It’s your right!
Making Connections. It's important that we share stories of those who have been diagnosed with breast cancer. A breast cancer diagnosis can be quite lonely (see related blog post here). You may have an abundance of support from family and friends, but what we’ve come to realize is that unless you are going through it yourself, it is hard to relate to and understand what it is we are actually going through. At the LBBC Conference, there was such incredible energy. You could approach anyone and immediately dive into a detailed conversation about your diagnosis, treatment plan, and lingering questions without needing to start from the very beginning (and without having to explain the definition of every term).
Late Stage Breast Cancer. I felt privileged to be able to speak with women who are living with advanced/late stage breast cancer (i.e., metastatic breast cancer or MBC). These conversations highlighted many different issues. There were many notable concerns and needs compared to the conversations we held with the "early stagers". Women had an opportunity to check a box for what the biggest concerns were and unanimously no one checked the box for sex and intimacy. That topic did not play a significant role.
Similarly to younger women who express unique needs and concerns, these women also shared a similar sentiment. The hot topics of these discussions were:
How to manage the good and the bad news
Navigating Death (your own or others)
And here a most salient notation from the above referenced conversations: What strategies can we utilize when members of our community pass away because there is no cure?
Oncologists may tell you that your disease is not curable but it is treatable. However, the realities of the prognosis weigh heavily on those diagnosed and their loved ones.
The beauty that emerged from these back and forth conversations was the appreciation of every detail of life, I.e., feeling the warm sun hit our faces, the taste of ice cream on a summer afternoon, the smell of pine cones in winter, or the beauty of watching the seasons change. Everyone agreed that "life is just different now".
This week’s Survivor Story.
Kandace M. shares her breast cancer story with us. Her experience brings a lot of these themes together. She is young. Her breast cancer has metastasized. In her first life she was a marathon runner who qualified for Boston. In her second life, she is a conquering stage IV breast cancer.
Know yourself and your body
I know many of us consider ourselves to be healthy, we eat well, we have started to follow a more plant-based diet, and we exercise regularly. But even without a genetic mutation, breast cancer can strike (only 10% of diagnoses can be attributed to a genetic predisposition). It may be living within us long before symptoms surface (if they ever do!).
You know yourself the best. If something does not feel right, get it checked out, be it a headache, bone pain, or lumpy scar tissue. Know that medical professionals want to be encouraging and tell us not to worry. Sometimes they will not give us the service we are seeking, like a scan or blood test, to give us peace of mind. But if there is a key take-a-way from the LBBC conference this year, it is that “we know our bodies the best and persistence is key. If your doctor thinks your symptoms are "nothing", or that "you are too young to have breast cancer", or that "you have no family history" etc., be encouraged to advocate for yourself, get a second, third, or fourth opinion until you find a doctor who will listen to your intuition and partner with you on your medical journey.”