In Advanced Breast Cancer, Sometimes the Patient Knows Best
Updated: Oct 25, 2021
On 10/23/2017 I had a phone conversation with a patient in Virginia.
She had been diagnosed in December 2012 with estrogen receptor positive breast cancer and received appropriate and aggressive therapy.
In 2015 the disease recurred. After a variety of hormonal therapies her disease again progressed.
In December 2016 she sought the opinion of a renowned expert based in New York and initiated an experimental study that targeted a mutation in a gene known as AKT.
The treatment protocol provided a brief response but her disease again progressed.
She then returned to Virginia where she received chemotherapy without benefit.
By the time she contacted my office her tumor markers were rising rapidly and her liver functions were deteriorating with her bilirubin doubling week to week.
Knowing Mutations Often Not Enough
The patient is extremely sophisticated and has received opinions from the best centers in the world.
Her experimental protocol predicated on the AKT mutation was novel but, as so often happens, the targeted agent designed for that specific mutation was rapidly circumvented by her cancer cells.
A Visit to Nagourney Cancer Institute
With disease progressing rapidly she and her husband traveled to California and underwent a laparoscopic biopsy so we could study her cancer tissue in the lab.
We identified an interesting three drug combination, one that I have never used in breast cancer.
The patient remained in California long enough to receive her first dose here, traveled back to Virginia and then returned the following week to complete the cycle.
Her Liver Was Failing
By that time we started therapy her bilirubin was 7 (normal up to 1.2) and the alkaline phosphatase 977 (normal up to 115). She was clearly jaundiced and her physician on the East Coast was understandably hesitant to continue treatment.
Another Opinion but Not Encouraging
At this point the patient sought an opinion from a major research center in Washington DC. It was her hope that the investigator might provide her an experimental option or offer to continue the therapy we had initiated in California.
To her chagrin, the breast cancer expert said “You belong on hospice.” “You will be dead within the week.”
She Chooses to Fight
Undaunted, the patient returned to California for a second cycle of therapy, a therapy which she had tolerated exceeding well.
Her private physician in Northern Virginia was kind enough to assist, but was unfamiliar with the treatments we had outlined. Finally I was able to identify another physician in Maryland and he assumed her care to continue exactly the schedules we had designed.
Two months later I received word from the patient.
She was in Pennsylvania with her 6 and 9 years old sons inner-tubing on the snow.
Her bilirubin had declined and she was feeling much better. Each time we have spoken since her meeting with the breast cancer expert in DC I ask her the same question: “Are you dead?”
I received word today from my colleague who has continued her care in Maryland.
With the bilirubin now completely normal and the patient's performance status back to 100%, the inquiry was whether we might push up the chemotherapy doses from the relatively low ones I initially selected.
Here was a patient who not only did not die on schedule, but instead thrived with appropriate and carefully selected therapies.
Over the Christmas holiday I received a lovely card with a picture of the patient, her husband and her two children. The quote: “Thank you for everything. You’re my hero. Thanks to you I was still here over the holidays.”
It is difficult to know how well this patient will do, but every day is precious.
With Youth, There Is Even More Reason to Not Give Up
A young woman with young children deserves the opportunity to get better.
While her condition was poor, her resolve was great. I completely understand the physician’s misgivings regarding the patient's prognosis, but to declare a patient unable to get better and furthermore to be unwilling to assist seemed cold at best.
Physicians use the tools at hand to make decisions and intervene where possible.
Young patients have a great deal of stamina.
They can withstand toxic treatments and bounce back. Although this patient had failed an experimental therapy, there were many relatively simple and nontoxic regimens that she had never received.
One such regimen, a hybrid of other combinations, proved highly effective and continues to prove effective to this day. I was disappointed with this academic physician’s cold-hearted statement and fear that we in medicine forget that we do not have all the answers.
We cannot peer into the future and know with certainty the likelihood of success. We can only guide our patients.
In this instance the patient, it would appear, knew better than her physician.
As always, I appreciate your thoughts and comments.
Dr. Robert Nagourney, has been internationally recognized as a pioneer in cancer research and personalized cancer treatment for over 20 years. He is a TEDX SPEAKER, author of the book OUTLIVING CANCER, a practicing oncologist and triple board certified in Internal Medicine, Medical Oncology and Hematology helping cancer patients from around the world at his Nagourney Cancer Institute in Long Beach, California. For more info go to NAGOURNEYCANCERINSTITUTE.COM