PATIENT VOICES
The Avocado in My Stomach

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Cheryl Alkon

In 2004, I moved from New York to Boston to move in with my then-fiancé, David. I’d grown up in the Boston area, but I decided to find a new primary care physician after the move. When I went in for my first annual checkup, the physician performed a routine physical exam that included feeling along my abdomen. The doctor felt what seemed like a growth, but he thought maybe my bladder was full and that’s what he was feeling. I went to the bathroom, then returned to the exam room.

The growth remained.

The Prospect of a Dramatic Diagnosis

The physician referred me to a surgeon, who also felt the growth and sent me for follow-up CT scans and a biopsy. At that point, I’d thought the discovery of this growth was interesting, but I wasn’t freaked out yet. I felt completely fine, with no pain or swelling or any other indication something was amiss. (I’ve also lived with several chronic autoimmune conditions for most of my life, so I’m used to doctor’s offices and weird findings that have turned out to be not a big deal.)

But when David, my mother Charlotte, and I returned to the surgeon’s office to get the results of the CT scan, it actually was a big deal.

The scan revealed a large abdominal tumor on one of my psoas muscles, which run along the lower back from the spine down to the pelvis. Located in my right abdomen, the growth was as large as an avocado and wide enough to touch one kidney and both ureters. My doctor ordered a biopsy, but it was inconclusive. Still, the surgeon thought it was most likely a rare abdominal cancer called a sarcoma. While this scared me, I also knew it wasn’t a definitive diagnosis, and that surgery to remove it would absolutely be the right thing to do.

Seeking a Second Opinion for Where to Have Surgery

Since the biopsy was inconclusive, surgery was the first treatment step. But removing the growth wouldn’t be easy; the mass of tissue was wrapped around or touching several organs. The surgeon told us the operation would be so complex and require so many different physicians (including the operating surgeon, a nephrologist to preserve the kidney, and an oncologist because the growth was believed to be cancerous) that I was better off going to a high-volume cancer center like MD Anderson in Texas. There, he said, the surgeons would be more familiar with sarcoma removal procedures.

But first, I wanted to do my homework. Through my own online research and a recommendation from my brother, a surgeon based in New Jersey, I reached out to the office of Dr. Murray Brennan, a sarcoma specialist at Memorial Sloan-Kettering Cancer Center in New York, for a second opinion. I was already leaning toward Memorial Sloan-Kettering since traveling to New York is closer to Boston than traveling to Texas, the hospital itself has an excellent reputation, and I knew the city well, having recently relocated from there.

After a week or so, David, my mom, and I were sitting in Dr. Brennan’s office. I knew I was in the right place when Dr. Brennan told us he performed up to six of these kinds of operations a week. My Boston surgeon had said he did maybe six similar operations in a year.

Fortunately, the procedure went well and the entire tumor came out cleanly. After a day or so, I learned the tumor was not a sarcoma, or any type of cancer, but rather an autoimmune growth that developed for no particular reason, possibly related to my other autoimmune conditions. After a month of medical leave, I returned to work completely healed. To monitor any possible recurrence, I had multiple follow-up CT scans in Boston. After five years of clean scans, I was able to stop my follow-ups and consider myself in the clear.

Lessons From My Experience

Even though my diagnosis was not as scary as I’d initially thought, I came away from my experience with valuable lessons for facing a major health challenge. Learn all you can about your diagnosis, and seek a second opinion if you are being advised to have an operation or are dealing with a serious or potentially scary diagnosis. Take detailed notes (or have a family member take detailed notes) when you meet with a physician to seek treatment, so you can recall all of the important factors affecting your treatment options. Also, read your health insurance coverage closely and determine what your plan will cover, what it won’t, and what your out-of-pocket costs will be should you pursue treatments your plan doesn’t cover.

I also spent a lot of time recovering at the hospital and then at home, and social connections were very important to me. This experience happened before the age of social media, but I sent out detailed emails to friends and colleagues to explain what was happening to me, that I’d be dealing with a medical procedure for a few weeks, and that I’d love to stay in touch. I got many supportive emails back, and spent a lot of time reading them and writing replies. Social support has been proven to help people who are healing and in my case, it was a fantastic way to stay in touch with people even when I was stuck in a hospital bed recovering, sometimes hundreds of miles away from people I loved and missed.

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2017 Sep 21
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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.