MEDICAL SCARE | DOCTORS
Blindsided by a Medical Issue
I learned a lot about doctors’ power and how they talk to us
I was trying on shorts before a visit to the east coast this summer when I noticed a strangely large bulge in my thigh and thought, “What fresh hell is this?”
At that moment, I wanted only to think about visiting family and friends. I decided to ignore the bulge until I returned, but I ignored it much longer than that, and by the time I saw a doctor, it was November.
“How long have you had this?” she asked.
“Since summer, at least. But honestly, I don’t know.”
She sent me to a surgeon, who confirmed what I already knew; I had a large mass in my femur. He sent me for a CT scan, which told us it was about four inches. Then he told me I should ideally see a plastic surgeon, because otherwise the aftermath would not look good.
At this point my stress levels were starting to be off the charts. I was able to do enough research to figure out that my insurance would likely pay for a plastic surgeon to remove this thing, which was a lipoma. I saw two surgeons who both said the mass looked benign, which made me feel a lot better. What I didn’t know was that malignancies can mimic benign lipomas, and sometimes, CT scans don’t see as well as other diagnostic tests.
I asked for a biopsy and an MRI but was told by both doctors I didn’t need it. Instead, I set up a surgery date on January 23 and was accompanied by a friend. I tried to stay calm all through the preparations. When care providers asked how I was doing, I decided to tell the truth about being nervous. They all seemed to say it was normal, but I soon found out they were chatting about me in the hall.
When the anesthesiologist arrived in my room, he said, “Your reputation precedes you,” with an amused expression. “I heard from quite a few people about your anxiety.”
“Really?” I thought. I wanted to ask why someone’s nerves about an upcoming surgery could be translated into a “reputation” — and why that should amuse him so much.
Instead, I said nothing, and we talked about the anesthesia process. A few moments later I was wheeled into the operating room and they knocked me out. When I woke up, the nurse said everything went well and I was relieved. I did have to wear a drain in my thigh, which was not fun in any way, but which I learned to tolerate.
I then discovered the mass was three inches larger than the CT scan had shown. That raised the statistical risk of malignancy, but in any case, they always send such things out for testing. Very, very quickly, my relief turned to dread.
My first follow up visit was two days after surgery. The doctor thought everything looked good, though as always in our post-pandemic world, the tests would take “a while” to come back due to staffing shortages. I asked the doctor what I would do if the mass turned out to be malignant, because I couldn’t help thinking about it.
“Why do you want to think negatively?” he asked. “That’s how you invite bad things into your world.”
I wanted to respond by saying no one ever wants to think negatively. I wanted to say my husband and I were supposed to be on vacation in two weeks, and that I wanted and needed a plan. Instead, my eyes teared up and I said nothing. We set up a schedule for more follow-up visits. About a week later, test results showed up on my patient portal.
They gave me the exact dimensions of the mass and then noted that specimens would be sent to another lab to test for “atypical cells.” My heart leapt and my stomach followed.
I was sitting next to my husband on the couch, trying to explain what I was reading. He kept telling me it would be okay, and I kept trying to believe him. Instead, I scoured the internet and found out there are malignant liposarcomas that can “pretend” to be benign. I read words like “clearing the margins” and “radiation.”
The test took another whole week to complete. In the end, I had to ask my physician’s nurse if she would help me find out where the specimens went, since no one seemed to know. It took her an hour to discover they were at the cryogenics lab — not at Mayo Clinic where we first thought. The results would be ready to share as soon as the physician in charge signed off on them.
The following day was Tuesday, and I had an appointment to check on the drain. Just having one makes it harder to do just about anything — but most of all, it makes you feel incredibly fragile and vulnerable.
Still, patients are told to breathe, calm down, think healing thoughts, and keep away bad energy. As if you can.
The nurse left the room for a few minutes, and I tried to focus on breathing, but all I could do was think about the results. When she opened the door again, my heart began pounding as she looked at me.
“Got them.”
“Really?” I asked.
She pulled up the results on her computer screen and I squinted to see the words. The test narrative said, “There is no evidence of amplification.”
At that point I found my breath. Hugged the nurse, who laughed. And then thought about what appeared to be a tiny margin between benign and malignant in the numbers on the screen. Still and all, it was enough to give me peace of mind I needed very badly.
The realization that this thing, which had loomed so large literally and figuratively, was not going to hurt me, felt like escaping from a burning building. I thought of all the people who don’t receive a good diagnosis and how that scissors up their lives, understanding how lucky I was on this particular day, in this particular circumstance.
At this point, I want to talk to the doctors out there, and anyone else in the medical community who deals with patients — especially anxious ones.
- Telling a patient not to wonder or plan for the worst is like dismissing a child who tells you he/she is frightened.
- Telling a patient they must think positively all the time without knowing their results is incomprehensible. We are not robots. We need to have some idea of what we might do if test results are a danger to us. Or at least, we need to know what we can expect.
- No one, no matter who they are, can change their nature. If you tend toward anxiety, it’s much harder to turn it off (and likely impossible). If you are a nurse or a doctor, I ask you to think about that next time you are with a patient.
As I write this, my husband and I decided to cancel vacation plans because I am clearly not healed yet — and being in a place where we don’t speak the language if something goes wrong just doesn’t seem like a good idea.
At the same time, my husband and I both admit we feel relieved and are looking forward to a staycation at home. And while my thigh doesn’t look so hot — there’s a dent and some rough incision scarring — I feel incredibly grateful to be able to concentrate on healing and nothing more.
I would say only that it’s important not to ignore any symptoms that might crop up in your body, and deal with them as soon as you discover them. Waiting is never a good idea, even though I understand dealing with medical stuff is never easy.
I also learned it’s important to ask for what you want and need. I wish I had told some of the professionals I met that what they say carries enormous weight when you are facing surgery, especially major surgery.
Is it easy to misinterpret a health care provider’s words? Perhaps. It’s also easy to hurt someone who is trying to work through fear unsuccessfully. And should I be in a situation where a doctor says something that rubs me the wrong way again, I will remind myself to speak up and let them know.
I hope you will, too.
