It’s been a week since we described our workup thus far on my blog.
It’s a time of anxiety and unanswered questions. The diagnosis and staging phase has been described as one of the two major tension points in cancer. The other is the time after remission, when the worry about recurrence is a constant burden. One of our doctors recommended we keep a “family bottle” of anti-anxiety medication ready for those times when the stress exceeds our capacity to cope. Cancer is truly a family disease and the emotional impact extends from the patient to family caregivers.
Many friends and colleagues have offered prayers and support. A few have lamented that care coordinated by a physician-husband at a Harvard-associated hospital in Boston lacks equity since every wife/mother/daughter may not receive the same care throughout the US. Kathy and I agree. We posted these comments in response to those who speculated that Kathy’s care consumes an asymmetric amount of healthcare resources.
“At the same time I’m focused on Kathy’s care, I’m also deeply committed to quality, safety, efficiency, and equity in healthcare across the country. In the upcoming weeks, I’ll describe how the electronic records that coordinate Kathy’s treatment provide the same protocols to every BIDMC patient, regardless of insurance status, profession, or income. My goal is the ‘right care’ – not too much nor too little – that follows best practices based on evidence. Decision support driven ‘right care’ is the only way we can hope to improve outcomes while bending the cost curve of healthcare spending that threatens the US economy. Universal healthcare supported by universal adoption of electronic and personal health records must be our guiding vision.”
“My life with John has been entwined for 32 years, so to say “we have cancer” cannot be more completely and utterly correct. True that physically, only one of use has the obvious organic symptoms, but our close partnership has been irrevocably changed by the diagnosis. Whatever lies ahead, it is impossible to go back to that innocent moment before hearing the word “cancer”.
I am luckier than most – I have health insurance, and access to a major urban medical center that is also a teaching and research hospital. But, as I encourage John to document our progress publicly in his blog, I am also keeping the memory of a friend close to my heart. She did not have health insurance (as a part time adjunct instructor of art). With this financial barrier, she unwittingly waited until the cancer had spread before seeking medical care, and although she fought bravely, she lost her battle with breast cancer.
Throughout my life, I have not needed medical resources beyond occasional primary care visits and the birth of one child. My first weeks negotiating the barrage of new terminology, new tests, and new doctors was significantly eased by my access to a personal health record. The hospital’s electronic health record is important to me, since it empowers my doctors to work as a team with open access to all my clinical data, enabling the team to make the best decisions for my health. As I recall my lost friend, I also think about all patients with a breast cancer diagnosis, or other serious illnesses, and how they manage their care journey if they worry about health insurance, or have no access to a personal health record.”
This week we continued the staging process in anticipation of finalizing our care plan (chemotherapy, surgery, radiation oncology) in early January.
On Friday, Kathy went to the operating room for a sentinel node biopsy. This is now the recommended standard of care for cancer staging as it uses radio-isotopes to identify those lymph nodes that directly drain the tumor. The surgeons harvested lymph nodes that were positive for radioactivity and one nearby node that was non-radioactive.
After the surgery I took Kathy home and the first thing she wanted to do was re-expand her lungs, avoiding post operative atelectasis. We walked a few miles around Lake Waban, watched the sunset, and discovered a family of Muskrats seeking their evening meal.
Her post operative pain was helped by gentle exercise and stretching. She took 2 Tylenol before bed. Although the anxiety of the workup has interrupted her sleep – she wakes at 3am and has a hard time failing back to sleep – her post operative course has been uneventful.
On Tuesday night, we received the pathology report from the sentinel node biopsy. It showed one lymph node (directly draining the tumor) with micrometastasis (0.1 cm) and one lymph node (not directly draining the tumor) without malignancy.
We’re guessing that the staging will indicate T3, N1, M0 – a HER2 negative ER/PR positive 5cm tumor, with positive but minimal lymph node involvement, and no distant spread. This may imply Stage IIIA, but we will await a definitive statement from the care team, since staging is complex and multi-factorial.
The tumor is very aggressive. Less than a month ago, there was no lump. Today, her left breast shows skin and shape changes. We’re meeting with the oncologist this afternoon to document the physical changes. In general, research indicates that outcomes are the same regardless of the order of treatment – chemotherapy followed by surgery verses surgery followed by chemotherapy. However, rapid growth and skin involvement may warrant chemotherapy as the first step. Since Kathy is continuing to heal from the sentinel node biopsy, we have to time next steps carefully. It’s likely that chemotherapy will reduce her ability to heal, so we do not want to start it too soon. However, the tumor is growing rapidly, so we want to start it as soon as possible.
Mentally, cancer can be overwhelming. It is important to think about cancer treatment as “fitting into your life and schedule” verses letting the cancer control you. The care journey will take time and there are many steps ahead.
Thanks so much to all who have offered their encouragement. Kathy and I are emotional and analytic people. Our endless optimistic is only occasionally punctuated with sadness. To paraphrase Robert Frost, the forest ahead is dark and deep, but there are promises to keep and there are miles to go before we sleep. We’re ready.
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.