Last Thursday, my wife Kathy was diagnosed with poorly differentiated breast cancer. She is not facing this alone. We’re approaching this as a team, as if together we have cancer. She has been my best friend for 30 years. I will do whatever it takes to ensure we have another 30 years together.
She’s has agreed that I can chronicle the process, the diagnostic tests, the therapeutic decisions, the life events, and the emotions we experience with the hope it will help other patients and families on their cancer treatment journey.
Here’s how it all started.
On Monday, December 5, she felt a small lump under her left breast. She has no family history, no risk factors, and no warning. We scheduled a mammogram for December 12 and she brought me a DVD with the DICOM images a few minutes after the study. On comparison with her previous mammograms it was clear she had two lesions, one anterior and one posterior in a dumbbell shape. I hand carried the DICOM images to the Breast Center team at BIDMC.
On December 13 she had an ultrasound guided biopsy which yielded the diagnosis – invasive ductal carcinoma, grade 3.
We assembled an extraordinary team of Harvard faculty – a primary care provider (Dr. Li Zhou), a surgeon (Dr. Mary Jane Houlihan), a medical oncologist (Dr. Steve Come), a radiation oncologist (Dr. Abram Recht), a pathologist (Dr. James Connolly), and a skilled breast imaging team. I also contacted my associates from the genomics research community.
On December 16, after my daughter’s last final exam at Tufts, Kathy told Lara about the diagnosis. Lara immediately offered her love and support. We also told the grandparents.
Today, Kathy completed a bone scan and chest/abdominal CT. Both are negative for metastases.
We also received the receptor studies from the tumor tissue.
HER-2/neu gene amplification – Not Amplified
Estrogen Receptor – Strong
Progesterone Receptor – Strong
Summarizing what we know thus far – the tumor is less than 5 cm, poorly differentiated/fast growing, not yet spread to bones or organs, HER-2 negative and Estrogen/Progesterone Receptor positive. Once the staging is completed we’ll be able to finalize a treatment plan and determine an estimated 5 year survival rate.
Likely, she’ll begin with chemotherapy to be followed by a left mastectomy in early 2012.
We’ll also explore her genome to understand the risk factors and determine if a bilateral mastectomy reduces future risk.
We’ll face many decisions ahead and many emotions. We’ve already assembled a community of supporters.
1 in 8 women will develop breast cancer in their lifetime. We never thought we’d be the one.
My Thursday blogs for the next 6 months will document our progress on the healing journey.
Thank you for your prayers and support.
John D. Halamka, MD, MS, is Chief Information Officer of Beth Israel Deaconess Medical Center, Chief Information Officer at Harvard Medical School, Chairman of the New England Healthcare Exchange Network (NEHEN), Co-Chair of the HIT Standards Committee, a full Professor at Harvard Medical School, and a practicing Emergency Physician. He’s also the author of the popular Life as a Healthcare CIO blog.