What I Wish My Surgeon Knew: I Have a Voice

When I was small, I was a baseball kid. My big dream was to play baseball professionally. That dream was shattered about 2 weeks after my 12^th birthday, when I was diagnosed with osteosarcoma in my right leg.

After my diagnosis, my biggest concern was chemotherapy. I was really nervous about chemo because one of my best friends had been diagnosed with neuroblastoma the year before. I spent a lot of time with her in the hospital and at home. I saw what it did; I was not prepared for that, and I did not want it.

Chemo wasn’t the only treatment lined up for me. From the beginning, my surgeon urged me to pursue limb salvage. My mom and I had other ideas, especially after learning about the mobility limitations that accompany limb salvage. Knowing how much I still wanted to play baseball, my mom researched other possible treatments. She learned that one procedure, rotationplasty, had the potential to offer better mobility, much less pain, and better outcomes in the future. I’m not super interested in looks, so I did not care that it was a backward foot and looks kind of weird.

I was all for rotationplasty. My surgeon, however, was not. He told me that limb salvage was my only and best option to live a “normal” life. He was talking about a visibly normal knee, not a functionally normal knee. The surgeon didn’t know what “normal” was for me.

We sought the opinions of other surgeons, all of whom agreed that limb salvage was my “only” option. Meanwhile, my parents thought I was dying because of how aggressive my tumor was; it never spread, but it was massive. Feeling like we didn’t have a choice, we agreed to pursue limb salvage with one caveat: I could get a rotationplasty if limb salvage didn’t work. My surgeon promised.

So I underwent limb salvage surgery. On one hand, my recovery was smooth: I had full range of motion and I was able to walk several miles. It was so painful, though, and I felt like I didn’t have many options to alleviate the pain. By this point, I had switched to a new surgeon, who responded to every discussion regarding my persistent and severe leg pain with the suggestion that I take some Tylenol.

About 4 years after my limb salvage surgery, there was a spike in my pain. I was really struggling to walk. I still went to my classes, but I wasn’t able to hang out with my friends. When I brought my pain up to my surgeon again, he gave me an explanation that did not make sense to me and said that there was “no reason” for him to look into it. He completely dismissed my pain.

The next summer I had another massive spike in pain, leaving me unable to walk or move for the most part. Knowing what my surgeon would say, my family and I went looking for a new surgeon.

We chose a surgeon at MD Anderson. My first appointment filled me with hope, and not just about my continued treatment for my leg. I am agender. When my mom referred to me as “they/them,” the surgeon responded: “What does that mean? How can I support you?” That made me pretty optimistic about having a surgeon who cared about using my correct pronouns. Unfortunately, even with this surgeon—my third now since my diagnosis—I experienced more of the same. I spent more time doing physical therapy and wearing a brace. Everything just made the pain worse. I spent months fighting for them to believe me, to take me seriously, and do something about my pain.

But I was dismissed again. During one visit, the surgeon told me that I wasn’t in as much pain as I said I was because I was a teenage girl and I didn’t know my body. After originally respecting my preferred pronouns, my surgeon dismissed my gender identity, my pain, and my agency in one short conversation. It was harmful in so many ways.

The only upshot was that a few meetings later, this surgeon agreed to do an exploratory surgery. If my prosthesis was broken, they would amputate my leg or perform a rotationplasty; if it wasn’t broken, they would exchange the plastic part of my knee and close me back up.

My surgery was scheduled for the day after my 18^th birthday. I was really nervous, but excited. I was pretty certain that I was going wake up with one leg, which is a weird thing to be excited about. But I was looking forward to it because of how much pain the actual leg was causing me.

When I awoke from surgery, I still had my leg—what the hell? My surgeon showed me pictures. Nothing was broken, but it was obviously inflamed. There was no visible reason for it.

So I made a deal with my surgeon: I would work hard during PT, but if after 6 weeks I still wanted to pursue amputation, she would do it. Then came the bad news: Despite what my first surgeon promised, rotationplasty was no longer an option because the metal was so grown over my bone it was virtually impossible to remove.

For the next 6 weeks I did a lot of PT and I walked as much as I could, even though it was painful. I tried to live as normal a life as possible. That was a very mentally challenging place for me. It would take me 3 days to recover from every hour of PT.

Finally, I told my surgeon, “This is not working, please schedule me for surgery.” She agreed. Less than 12 hours after my above-knee amputation, I was up and moving around. I immediately started doing PT and walking on crutches. My parents said it was like a weight had been lifted from me. They said I was the happiest that I had been since before I was diagnosed at 12 years old.

And I continue to thrive; I received my first prosthetic recently, which allows me to walk more. I am now enrolled in college, studying vocal jazz. Most importantly, I’m completely pain free.

I have learned many lessons during my youth, including how to advocate for myself, how to ask for support, and that my life and happiness are worth fighting for, which will serve me well throughout my life. My wish is that my surgeons would learn some lessons, too.

What I Wish My Surgeon Knew

I wish my surgeons knew that they are not always right. It’s important to use your medical knowledge to present the options to your patient and tell them all of the information about their options, including your opinions. However, it is not okay to make decisions for them.

All three of my surgeons did that. They told me that I didn’t have a say in my treatment plan. It wasn’t worth their time to listen to me and make the best decision for the lifestyle I wanted.

Second, I wish my surgeons knew that my pain was real and debilitating. Dismissing me and my pain only caused me to question myself and the way my body felt. That has led to so many mental health struggles that add onto my physical health struggles and make life unbearable. I wish they knew that their dismissal has life-long effects.

Third, I wish my surgeons knew how important it is to respect their patients. When my third surgeon respected my pronouns, I had every hope that we would be a good match. As time went on, they showed they cared less, and I began to lose trust in what they were saying. Making the effort to have a good relationship with your patient can be so reassuring, making us less anxious about surgery and helping us trust that you are doing what is best for us.