I’m always amazed when I learn something that I should already know. I had the immense privilege and pleasure of meeting with the Executive Director of the Breast Cancer Research Foundation (BCRF) in New York last weekend.
We met because I am heavily involved with a CBS special honoring cancer survivors and thrivers called Jump Jive and Thrive that is taping in Pauley Pavilion October 8th. I’ll write more about that later.
What I learned that I should have already known was that a lot of metastatic breast cancer (MBC) patients get very frustrated during October, breast cancer awareness month. Metastatic breast cancer—also called stage 4 breast cancer or advanced stage breast cancer—is defined as cancer that originated in the breast and has metastasized or spread outside the breast to another part or organ of the body. While the majority of people are celebrating those that have finished treatment or are on a course of treatment that has an end date, MBC patients often feel left out or forgotten because there isn’t a “cure” and treatment never ends for them. While the 5-year survivorship rate for Stage 1 – 3 is from 99% – 72%, the 5-year survivorship rate for MBC Stage 4 breast cancer patients is 22%. When you hear of the 40,000 who die yearly from breast cancer, the cause is metastatic breast cancer. The best MBC patients can hope for is long term, ongoing treatments that help keep their cancer at bay (either stable, regressing or ideally, no evidence of disease) and allow them to live pain free and as joyful and fulfilling lives as possible for as many years as possible. Treatment never ends for metastatic breast cancer patients. MBC patients want what we all want, a desire for a long fulfilling life and a good quality of life.
Yesterday I was blessed to meet with Dikla Benzeevi who is a 15 year MBC patient, as well as a volunteer patient advocate and navigator for the MBC community. (MBC patients have a median survival rate of 2 – 3 years.) While solemn and a bit fatigued, Dikla has tremendous hope and gratitude even while living with this disease. Gratitude in the midst of pain, uncertainty and much hope… Meeting this amazing woman is one of the most humbling experiences I’ve ever had.
I innocently told her how fortunate I was because 10 years ago they didn’t have much for my type of breast cancer. As I said this, my heart stopped because I knew that Dikla and I had the same type of breast cancer… the only difference is that she was diagnosed 15 years ago… many years before additional therapies for our type of breast cancer were created. Since that time, her cancer has spread.
Dikla spoke with clarity and empathy without making me feel bad that I had experienced the exact opposite cancer experience… stage 1 breast cancer with targeted chemo that we knew would work.
Dikla had just gotten out of a four-day stay in the hospital to treat a very painful, partial small bowel obstruction due to extreme intestinal inflammation caused by some of her clinical trial cancer medications. Dikla has been on 16 different cancer meds in different doses and combinations since being diagnosed in 2002. You could never tell from seeing Dikla that she has been dealing with MBC for 15 years. For Dikla and for many with MBC, the physical and medical struggles and challenges are usually not visible on the outside. The stereotypical cancer look is no longer the usual. I was beyond amazed to hear her say how “grateful” she was that surgery wasn’t needed and that the cause of the inflammation wasn’t from a tumor. She went on to enumerate her blessings that she was already feeling better. She smiled telling me how nice it was to have an appetite and be able to eat again.
Dikla expresses a hope that while research, at this point, can’t promise a cure for her future—and less than 10% of all current breast cancer funding goes into investigating MBC (the deadly form of breast cancer)—that more desperately needed funding goes into targeted research for MBC and will provide life extending treatments that maintain a good quality of life for her and her MBC peers.
I recommend you peruse the websites dealing with metastatic breast cancer and learn how to positively support someone you know who is dealing with metastatic breast cancer or if you are dealing with MBC, find support and information on the following websites:
How to help friend with metastatic breast cancer:
As I spread my wings as a thriver, my gratitude swells. My humility deepens. The main difference between my circumstance and Dikla is timing. Each day of research we get closer to answers–even if the answers are eliminating what doesn’t work. It’s through the strength of Thrivers, like Dikla, that inspire me.