Be Brave Enough to Speak Up!
Sometimes we are not only fighting the disease we may have, but also a system that might be working against us. According to the ACS Journals "In 2022, approximately 287,850 new cases of invasive breast cancer and 51,400 cases of DCIS will be diagnosed among US women, and 43,250 women will die from breast cancer." The numbers keep increasing year after year, and preventing this disease has becoming more difficult.
Raina is a 41 y/o Black woman with a PMH of left-sided breast cancer, diagnosed 2 years ago when it was discovered on her very first mammogram at age 39.
For her 39th birthday, she decided to make an appointment with her doctor for a comprehensive physical exam including a pap and mammo. She diligently performed her BSE (breast self-exams) as recommended and never felt any lumps.
She has no 1st-degree relatives with breast cancer, but her grandmother and her grandmother’s sister both died of breast cancer at young ages.
When she tried to obtain a mammogram at age 35, she was told ‘no’ by her primary doctors. “It is not indicated. . . dense breast tissue in young women. . . false positive. . . yadda yadda yadda.”
When she argued that she was ‘high-risk’ based on her family history she was informed that she, in fact, was *not* high risk since she has no *first-degree* relatives with breast cancer (mother, sister, daughter), nor did she have a personal history of breast cancer. She did not receive genetic testing for the same reasons. Since her HMO wouldn’t allow mammograms, unhassled, as screening for women such as herself - and since her PMD didn’t continue to actively advocate for this exam - nothing happened. . . and the cancer grew.
So after her very first mammogram, weeks before her 40th birthday, there it was “an abnormal density” in her left breast. Ultrasound. Biopsy. Biopsy is “inconclusive.” Weeks pass. Finally, another (larger core) biopsy reveals the cancer. She is *then* rapidly scheduled for a lumpectomy, XRT (radiation), and chemo.
She goes into remission.
Then, 2 years later, like clockwork, she goes to her PMD for a “check-up.” She is told “Everything is fine.” She is told she doesn’t need to come back as frequently. She is scheduled for a mammogram in 6 months. 6 months pass. Mammogram is abnormal. There is a density in the right breast. It is not calcified so the “suspicion for cancer is low.” She is scheduled for an ultrasound, and repeat mammogram in 3 months.
In the meantime she develops a cough. Then a fever. Then the cough becomes productive of yellow sputum. Then weakness and fatigue sets in. She sees her doctor. They do a CXR and see “an infiltrate.” It is diagnosed as pneumonia and treated with antibiotics. The HMO calls her to schedule her ultrasound, but she explains that she is too sick with ‘pneumonia.’ A note is made, but nothing was done.
She returns to the PMD when the ‘pneumonia’ persists despite a course of strong antibiotics. She is given another prescription for a different antibiotic, and sent home. This 2nd antibiotic causes her to have diarrhea, abdominal cramping, and eventually dehydration.
This is when she presents to me in our emergency department.
Chief complaint: nausea, vomiting, productive cough, shortness of breath, abdominal pain, and diarrhea for 1 week.
Her husband is at the bedside holding her hand. Both look at me as I enter the room and through their tears they both start talking at once. . .
“Dr. Taylor please help us!” is how it begins. . .
Oh. And while this story is shared with permission, her name is obviously not really Raina.
Part 2 of the story:
This patient had "done everything right" and here she was. In my emergency room with her husband begging for me to SLOW DOWN and HEAR them.
So I did.
I sat down. And took notes.
She and her husband are frustrated and tearful. They explain their entire story to me, looking at me wide-eyed and hopeful as I sit and listen, getting drawn into their story....their lives.
She explains to me that she has 3 little girls at home - ages 2, 5, and 7 (and there is an entire story behind that 2-year-old in the midst of a breast cancer diagnosis/treatment!). She explains to me that she did everything "right." She feels her PMD didn't listen.... that the process took too long... and that valuable time was lost. She detailed the "fight" she had in an attempt to get a mammogram in her mid-thirties, but couldn't get it done due to the SELF-RIGHTEOUS and rigorous adherence to "guidelines" and "protocols" that were never designed with her in mind. Even in the face of overwhelming evidence that SHE was an outlier, she couldn't understand why her physicians didn't practice the ART of medicine (and instead allowed "policy" and "bureaucracy" to dictate her care.)
Her husband describes the unimaginable strain his wife's illness has placed on him and their family. When half of the partnership is "down," the household just doesn't function well. They were looking at me.... afraid the cancer was back. Tired of being treated over the phone with antibiotics. Tired of being forced into an 'algorithm' that clearly wasn't a good fit for them.
As I listened to her new symptoms trying not to cry myself, she said: "Doctor, I feel worse than when I was on chemo!"
[I think this statement is what really got my attention!!]
She complained of headaches, double vision, dizziness, nausea, vomiting. She complained of fevers, chills, trouble breathing, diarrhea, and abdominal cramping. But mostly, this time, it was the shortness of breath that brought her into my emergency department.
So, I order a CT scan of her chest to rule out a pulmonary embolism. I draw labs. When the renal function tests reveal renal insufficiency, I call the radiologist and explain my concerns and what I am looking for (so he would approve my ordered studies). He agrees that a full body scan with contrast is indicated since it was obvious, she was going to need a staging CT, so we needed the contrast. And approves my study.
Results: her cancer had returned.... everywhere. Her brain, spinal cord, bones, lungs.... and right breast.
It is so incredibly frustrating when I hear someone (anyone) making medical decisions for a patient without the credentials to do so (such as these hospital administrators, UR, insurance admins, politicians, etc.). I understand "guidelines" but as the physician, I don't believe that "guidelines" supersede my medical education, training, and expertise with a particular patient in a specific situation. I should not have to *justify* my treatment when I'm doing "what's right" for the patient.
The metrics used to adjudicate physicians (how little time spent with patients (so you can see more), guideline followed, satisfaction score, money saved) are bullshit and counterproductive. On the surface "they" say physicians are "independent" but when a "deviation" occurs the paperwork to justify that "deviation" is so burdensome (and may jeopardize your employment) is it REALLY "independent" physician decision-making guiding medical practice?
Going the "extra mile" for a patient may mean the end of your job.
This forces all healthcare providers to "pick and choose" who they go "the extra mile" for. And for my patient today, she wasn't one of those coveted patients for that physician...
On this day, I was very upset with "the system" and heartbroken for this patient.