After our first consult with Dr. B and Dr. L, we collected our notes and prepared to leave with what was left of our brains. Then Dr. B popped back in to introduce a young research assistant. Dr. B stressed that the study was strictly voluntary. She also said that it would advance breast cancer treatment but also benefit Gaye directly.
Researcher H tentatively pitched the benefits of the study, (a clinical trial for a surgical appliance) . Gaye quickly agreed to participate in the study. Relieved of the burden of “selling,” the soft-spoken young woman bloomed in explaining how the process would work and immediate benefits like a prepaid parking card.
You can’t believe everything you find online and some you won’t want to believe
In the interim between the initial consultation and the test results we had time to continue our research. There is an abundance of information online from breast cancer forums to support groups to research symposiums. Sadly, not all of the information is good.
But worse than the alternative treatments and the outright lies propagated by the lunatic fringe is the heartbreak of treatment-lag documented by actual breast cancer patients and physicians.
So many of the journeys involved tone-deaf care or dusty care plans that would be easy to discount as sketchy anecdotes from disgruntled patients. But more than one doctor speaking at symposiums declared that they didn’t do lumpectomies—despite countless clinical studies that demonstrate the efficacy of lumpectomies over complete mastectomies in certain early-stage cases. Still other doctors stated that they didn’t “do” reconstructions. Those attitudes fly in the face of established findings linking reconstruction to overall positive recovery as well as decreased post-surgical depression. Without coordinated care, the patient is left to navigate recovery on their own.
Far from standard
Having grown up here, I could not understand why so many people would come from all over the world to Houston for medical care. Didn’t they have doctors where they came from? Wasn’t the care at least comparable? Did they not read the weather report or have any concept of what 90% humidity feels like?
From our reading, clearly the answer is ‘no.’ Sadly, in almost every instance of entrenched-outworn care, the attitudes were well off the established medical-research path both intellectually and geographically. To put a finer point on the pencil, it truly seems the further you get from Boston, NYC, Houston, and Los Angeles, (with honorable mentions for Cleveland, OH and Rochester, MN) the more…defused the care becomes.
It is evident not only in dated care plans but also in continued subconscious, (we hope) biases women of color still face in healthcare. While breast cancer is more common in white women, black women are still more likely to die from it. There are myriad contributing factors but access and level of care are huge. This is immediately borne out in repeated anecdotal and as well as published findings in which black women are not offered lumpectomies or reconstruction after surgery at the same levels as white women.
Location, location, location
One of the few benefits of living in Houston, Texas is the proximity to the Texas Medical Center. Heart surgery was pioneered here. Organ transplant innovations were piloted here. But more importantly, (for us, anyway) the University of Texas established the M.D. Anderson Cancer Center here, in 1941.
M.D. Anderson ranks first internationally in cancer care and scientific study with over $800mm dedicated to cancer research in 2018. Surgical innovations, chemotherapy and radiation therapy innovations, even proton therapy were all developed at M.D. Anderson Cancer Center. That knowledge then spread throughout the international medical community. Except where it didn’t.
So, depending on the genetic test results and additional biopsies, Gaye had the prospects of a lumpectomy based on the indices gleaned from studies done at M.D. Anderson. Her oncology surgeon has a plastic surgeon in the loop for reconstruction.
Reconstruction is one of the few cosmetic procedures insurance will pay for. That is largely due to studies that link the patient’s overall physical recovery and emotional health to body-image. Those studies were conducted around the country but M.D. Anderson led the charge.
Breast Center—more than a name
The hospital we went through is affiliated with a medical school of some renown but more importantly, the hospital refers breast cancer patients to a center established exclusively for breast cancer care. More than convenience, (and NOT having to schlep all over the fourth largest city in the country for tests, consultations, and counseling is a huge issue) it is a collection of “next logical steps.”
What that means is when Dr. B left the exam room on our first visit, the clinical-trial researcher came right in. When the researcher exited, the genetic testing counselor entered. From there we crossed the hall for lab work. Easy-breezy-covergirl style.
Dr. B stressed the benefit of participation in clinical trials but never tried to “hard sell” us on the process. However, what we found is that one test led to another. Surgical device trials led to a medication trial which led to a trial for the lymph node process.
In the weeks that followed we got the results back on the genetic test results. The testing array screened for 67 genetic markers that could suggest thousands of genetic mutations and indices of congenital abnormality. BRCA, the genes we were most concerned with, came back negative.
“This is not the end, this is not even the beginning of the end, this is just perhaps the end of the beginning.” Winston Churchhill
Our care plan was still not set. There were still questions. Gaye would have additional biopsies, (which we’ll touch on next time). But the intense dread of BRCA no longer dominated our thoughts. Practical care, under the umbrella of a center made all the difference for us.
The photo at the top, Gaye at Harvard Hall, is by yours truly and is used by my very kind permission.