Barbara’s Open Letter To Vice President Joe Biden

Barbara wants so badly for Inflammatory Breast Cancer (IBC) and metastatic cancer to be solved. We all do! She submitted her story today to Vice President Joe Biden’s US Moonshot cancer program. We hope you will submit your story, too.

Barbara lives in hope and some of that hope is based in science.

Breast cancer was familiar like an apple; everyone knows it, non-painful lumps are detected early by mammograms and this early detection saves lives. Then I learned about oranges and tomatoes…

I was a 42 year (young) well educated, empathetic and yet driven business executive, daughter of a breast cancer survivor.  Within a few weeks time, I developed pain and swelling, radiated heat, normal skin became thick and hard like the surface of an orange and red like a tomato.  I had stage IIIC inflammatory breast cancer (IBC).  It can’t be detected early (before stage III), it doesn’t show up on mammograms and it’s the most deadly form of breast cancer.

I had never heard of it.  Stunned.  How could this be?  Then I learned that there are still about 40,000 women per year in the US dying of breast cancer.  Dying.  No pink, no walks or banners, not surviving, dying.  And this hadn’t changed at all over the years.  I was mad and felt deceived.  Stage IIIC is the last stage before IV, metastatic terminal cancer.  It’s standing on a mountain cliff with a bear behind you.  Should you battle the bear or jump off the cliff?

We need transparent rapid research for cures to breast cancer, especially metastatic and deadly forms like IBC.  There are precious few resources going to research with barriers of protected silo’s for economic and ego reasons between drug companies, doctors and researchers.  I’ve received excellent care at Dana Farber Cancer Institute under the IBC specialist, Dr Beth Overmoyer and will soon participate in a vaccine trial at Abramson Cancer Center in Philadelphia with Dr Czerniecki where VP Biden visited as part of the US government Moonshot program.  There are a handful of IBC specialists in other locations like Dr. Cristofanilli in Chicago, Dr. Ueno in Houston and a few others internationally who are part of the International IBC consortium.  It is a good idea, but very hard to execute transparent rapid research for cures.  Please help us accelerate, break down the barriers and yet keep the incentives for the best and brightest to solve the many facets of cancer.  We can figure this out.  We have the potential to be the best cancer solvers in the world. In the meantime, the IBC Network Foundation is providing an app with the IBC best standard of care, converting dollars to research grants at a high percentage, and hosting a private Facebook group for collaboration among hundreds of women who have nowhere else to go.  Standard breast cancer treatment or worse, undiagnosed IBC treated as an infection, can kill you as it expands.

My friends are dying of this disease and many of them are young mothers, leaving beautiful children behind.  I’m still fighting the bear; brutally scarred, burned, fatigued, mentally and physically impaired, but still standing.  VP Biden, we need your help!  I hope to continue this dialogue with you and others who can rapidly impact change.

Hope Always,