A strange benefit to having lived with MS and RA for about a decade is that the emotions surrounding the diagnoses become a distant memory. While I’ve often said that each new relapse or flare-up can re-launch you on the rollercoaster of uncertainty associated with living with progressive, chronic diseases, the fear and doubt pale compared to that initial, horrible, what-in-the-heck-will-happen-to-me-in-the-future fear that comes with not knowing.
I’ve recently been reminded what it feels like to not know exactly what’s going on. To be told, “We found something and want to do more testing. You are scheduled for a procedure next week…that’s a lot like going to the dentist.” To sit in a consultation room shortly after the doctor leaves, pull out your iPhone and google the words she used, and begin to process what you’ve just been told.
Last week I went in for my annual mammogram following which I received the standard all-clear in the form of a check-box report. No abnormalities detected. But since my breasts are very dense and I’ve developed lumpy bumpy cysts in recent years, my nurse practitioner had also ordered ABUS (automated breast ultrasound) which is a newer technology that can detect abnormalities in dense breasts that are not seen on mammogram. Ironically, my breasts were too large for the machine to be effective so the traditional hand-held, manual testing was done instead.
Besides the cluster of cysts in the right breast, the ultrasound unexpectedly found two solid masses in my left breast which is what prompted the brief meeting with a radiologist to schedule a core needle breast biopsy in a week. The biopsy took place on Tuesday afternoon and I was told that the report from the pathology lab should be back in 3-4 business days, probably by Friday. Not too long of a wait.
Now it’s Friday morning and I get a call from the Radiology department where all of this activity has been taking place. The employee on the phone quickly and simply says that the report came back “not cancer” - which is good news.
“You need to come back in 6 months for a follow-up sonogram,” she continued, “but you will need a new doctor’s order.” She was ready to hang-up when I call out, wait How can I get a copy of the report?
“I can mail it to you; are you still located at 282……? Ok? Bye.” Wait!! (again), can you please read to me the actual words used in the report?
I’m a knowledgeable and engaged patient and have come to expect more than 2-word reports. She reads me one word - fibroadenoma. Not the full report, just one word. This is the same word that I had googled after the original consultation with the radiologist following the discovery of “indeterminate masses.” No context given, just one word.
I wonder - have I gotten so used to being provided complete information that 1-2 word responses are entirely insufficient? I certainly hope that patients who are receiving bad news are given more information during a less hurried phone call.
Fearful but thankful
But for me the experience of the past 10 days reminds me what it is like to be in the dark, to not have all the answers, and to sometimes feel rushed during medical encounters. It reminds me what it is like to fear the answers.
I must say though that I am thankful for the doctor who performed the breast biopsy and his assistant. They both displayed patient, calm, and compassionate behavior that reassured me that I was recognized as a person first and foremost, not just a specimen or potential diagnosis.
Now with the good news in hand, I can move away from the phone, take a deep breath, and enjoy the weekend.
Be well, my friends. No matter what unknowns you are facing, please know that there are others who have been there. Others who can provide support and help you to navigate the many uncertainties of life with imperfect health. Please continue to reach out and know that you are not alone.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.