What I Wish My Surgeon Knew: Going it Alone

As if finding out I was pregnant at the beginning of the COVID-19 pandemic wasn’t enough of a shock, after enduring months of pain in my leg for no apparent reason, a blood test and a biopsy were followed by four words that sounded bad, and once translated, turned out to be even worse: “high-grade chondroblastic osteosarcoma.”

I will never forget that initial meeting with my surgeon. He let my husband come with me, even though most people were not allowed to have visitors at their appointments. The staff permitted my husband to take me up in a wheelchair, for what would be the first of many trips.

I don’t remember all the details from that encounter, but one certainly stuck out: “I think we can save your leg.” The alternative hadn’t crossed my mind. But, as I settled into treatment—and experienced complications—I’ve had the chance to think back on that visit, and I realized: no alternative options were discussed. At the time, like most patients, I didn’t even know what other options might look like. I didn’t know what I didn’t know. I couldn’t begin to formulate, much less to ask, further questions. I trusted this man as the expert.

My limb-salvage surgery took place in April 2020. I started chemotherapy about 6 weeks later, and just a month after that, my husband and I welcomed our son into the world via caesarean section at 27 weeks gestation. He weighed just under a pound and a half and endured a 9-week stay in the NICU, all with a mother on chemo and the world in COVID-19 crisis mode.

At the beginning of my diagnosis, I had multiple doctors and needed many appointments. I attended most of these alone. My husband was with me when we first met my orthopaedic oncologist, but he could only be on the phone for my initial oncology appointment after we first confirmed it was cancer. He could also only attend via phone for my first maternal-fetal medicine appointment, when we discussed the effects chemo would have on our unborn baby. That was a lot of information to take in alone, during an already difficult time. Visitors weren’t even allowed during the hospital stay after my limb-salvage surgery. That was hard. I had my surgery on a Saturday and the next day was Easter 2020. It was the strangest Easter I had ever experienced without attending church, but being away from my family on such a big holiday in the midst of a world crisis was harder. My husband was able to attend the birth of our son, but to this day has never met my oncologist face to face.

And then there was the communication. I was told that all of my care providers were in touch with one another about my care, although I don’t really know how, how often, or how much. I do know that my mind would’ve been put considerably more at ease if we had a single “team meeting,” even virtually, that included the physicians, the physical therapist, my husband, and me. It would have been nice to know we were all on the same page.

I am a notetaker, so I went to all my oncology appointments before starting chemo with my list of questions. I did my best to listen, take notes, and try to comprehend everything that was being told to me, all while I was less than my normal self. Although I don’t feel like my care suffered, I do wonder what information we would have received differently if someone was with me. This would become especially important later on, given the problems I had with my extensor mechanism after limb-salvage surgery. My husband didn’t see me in person until 5 days after the operation, when I was released to go home, and he didn’t see my surgeon until more than a month later.

No one could have anticipated COVID-19, and I know that my caregivers did their best to try to limit patient and staff exposures to the virus. I know that this was especially important at cancer care centers, like the one where I was treated. I know that more than a million people have died in the United States from this virus, and I don’t minimize its impact on care delivery and on the people who provided care during the worst of the pandemic. I firmly believe that being alone for the entire postsurgical stay also set the tone for my whole medical experience in 2020 and beyond. It has felt like a strange separation of this experience, and it adds to the surreal factor of it all. I have been an avid mask-wearer during the whole pandemic, understanding the seriousness of COVID-19 from the beginning. I completely support the decisions that were made to restrict visitors, but it definitely led to an extra layer of isolation in an already very difficult situation.

I ultimately went through six rounds of chemo primarily using the MAP protocol for osteosarcoma, which included both inpatient and outpatient chemotherapy. No family was allowed to accompany me for this, either. Staff members wheeled me into a building and took me where I needed to go. My chauffeur—also known as my father—was left in the entrance, alone. No one outside of medical personnel actually saw the chemotherapy drugs going through my system. The nurses would suit up, and I would wear my mask and confirm my name, DOB, and hope for the best. The only pictures I have are the ones that I took. In my family, I alone hold the memories of this experience.

Looking back, I now realize how much trust I placed in the experts who looked after me. When someone is brand new to a diagnosis, it’s natural to hold on to what your doctors are saying. Much of the time, you are unaware of all the things you should be asking about. Now, three years later, I still think about what my surgeon said. They “saved” my leg, but it wasn’t very functional. My replaced knee would only bend about 30 or 40 degrees. The resection took a lot of my quadriceps muscle because the tumor grew out of the bone. I have been experiencing continuous, worsening, unexplained pain in the knee since March of 2022.

The way everything went, I barely had time to connect with anyone in the osteosarcoma community before my initial limb-salvage surgery. All of the information I found was on my own, mostly via Facebook. I have since offered my name to the local surgeon if any others are diagnosed and need an understanding ear. I have also been able to virtually connect more with others in the osteosarcoma community, which has been wonderful to know I’m not alone. Sharing experiences with long-term survivors and people closer to treatment has helped me find a place of belonging.

Even if I had known about the other surgical alternatives, I think I probably would have tried limb-salvage surgery. Still, it would have been nice to have been told about other options.

After many conversations and lots of research, both with surgeons and other people in the osteosarcoma community, I decided to have a rotationplasty. As I anticipated this surgery, it was strange to realize I could have visitors and other outside help. I am now confident that rotationplasty was the right choice for me, but I am grateful that I will always know what limb-salvage surgery was so that I would never wonder if I made the right choice. But I also can’t help but wonder how much activity with my two boys, now 4 and 2, I have missed out on because of my limited mobility.

It is now June 2023. I had my rotationplasty amputation surgery in November 2022. I have had a prosthesis full-time since April. Since then, I have had increasingly better mobility and opportunities to do things with my family. While I anticipate some lifelong aches and pains—as is the reality of living in a disabled body—I can already see that my quality of life has increased exponentially. I am excited about all that my family will be able to do with my increasing comfort and abilities.

What I Wish My Surgeon Knew

I know that surgeons don’t have all the answers, and it’s not the surgeon’s job to fill every gap in a patient’s knowledge. But since patients don’t know what they don’t know, surgeons should take the time to discuss all reasonable care alternatives. I think it is also an important part of their job to connect the patient with individuals, or a community of individuals, who can help each patient feel more comfortable about his or her procedures and treatments. Most importantly, surgeons can play a key role in helping the patient form bonds with healthcare professionals so the patient doesn’t feel like they are going through it alone.