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Young patient with rare spinal tumor benefits from multidiscipinary care at Spinal Tumor Center

By: Crystal Huff

This past spring, Elena Berjer went to her local emergency room in Cape Girardeau with severe abdominal pain. She assumed it was her appendix and figured at worst she would need a quick surgery to get back to normal.

Elena says she was not prepared for what the doctors told her. “I was told the CT scan showed bone cancer on my spine and a mass in my abdomen that was causing a disorder in my intestine. I was in shock. I am only 19 years old, and I could not come to the realization that this was happening to me so young.”

The physicians wanted to transfer Elena to the oncology floor at Barnes-Jewish Hospital in St. Louis, but there were logistic challenges. Her second option was to go to the emergency room at Barnes-Jewish Hospital, so she and her family made the two-hour drive to St. Louis.

Once she arrived to the ER at Barnes-Jewish Hospital, doctors immediately ran blood work and performed more CT scans and MRI’s.

After her test results returned, Elena was told that the mass in her abdomen was only an ovarian cyst, but she did in fact have a tumor on her spine at T11. The next morning, a biopsy was performed on the tumor and Elena was sent home to wait for the results. Until it was determined what type of tumor Elena had, a treatment plan could not be outlined.

Matthew Goodwin, MD, PhD, a spine surgeon who specializes in spinal tumors with Washington University Orthopedics, saw her the morning after she was admitted. He told her that until a biopsy was done, a final diagnosis cannot be made. He reassured her that as soon as the biopsy was analyzed (usually around one week), she would follow up with him for an office visit.

Elena and her family could not believe how quickly life had changed. “I had absolutely no back pain. I only had stomach pain, but could possibly have a cancerous tumor on my spine.”

Dr. Goodwin explained her particular tumor: “Elena is a very special patient to me, and her case, while interesting, also highlights how our Washington University multi-specialty care is second to none, and why patients with spinal tumors choose to get their care here. Based on her imaging, this appeared to be a cartilage-containing tumor. Our WashU pathologist, John Chrisinger, MD, diagnosed it as a particularly rare cartilage-containing tumor: fibrocartilaginous mesenchymoma. It’s a tumor that has only been reported in the literature five previous times in the spine. Because of the rarity of this tumor, I wanted to be sure the diagnosis was 100% correct. We agreed to send off a few molecular tests, decided to get another biopsy, and sent our samples to another leading pathologist in the country to get another opinion. Not only did the tests confirm Dr. Chrisinger’s excellent diagnosis, the outside pathologist requested to keep a pathology slide due to its rarity. Although the final diagnosis is not made until the whole tumor is out and analyzed in full, we were pretty confident we knew what we were dealing with at this point.”

Dr. Goodwin discussed the diagnosis of fibrocartilaginous mesenchymoma with Elena and her family and what the plan would be.

Elena says, “I was shocked and scared. But as I was talking to Dr. Goodwin, I immediately knew I was going to be ok. He cares so much about his patients and that meant everything to me. He asked me about my personal life to help figure out the best surgery for me.”

Dr. Goodwin explained, “The tumor was compressing her spinal cord and had destroyed part of her vertebrae. Because these tumors can be very locally destructive, which in her case would mean paralysis and/or instability of her spine, the only reasonable option was complete surgical resection.”

In the weeks leading up to the surgery, Elena had several virtual appointments with Dr. Goodwin. “My family would be included in the telehealth visits so everyone could listen to Dr. Goodwin explain the 12-hour procedure. I felt comforted but still really worried.”

Elena says Dr. Goodwin constantly reassured her and motivated her to stay positive. On that first visit he gave her his cell phone number and encouraged her to call with any questions. Dr. Goodwin would say, “You have to be strong and never give up. It’s going to hurt but you are not going to be paralyzed. We are going to take care of you.” Elena says, “He would say it with such certainty that I just knew I was going to be just fine.”

Dr. Goodwin elaborates, “In cases like this, where there is a large resection of part of the spine to remove a tumor, surgery is not benign. Due to the invasiveness of the surgery, the side effects and/or complications can be daunting. I tell the patients up front, we are going to take the tumor out of your spine and do it safely and completely, but that is going to come at a cost. The cost of removing a big tumor from your spine and spinal cord is that there is likely to be some complication. It may be big or small, but we should go in prepared for anything that may come our way, knowing that we are going to trust each other and work through it together. Often times this conversation has to play out over a few visits. Usually all the patient and family hear the first visit is that there is a tumor in their spine. They usually need another visit or two to digest what that means, what the specifics are, and what options we have to take it out. With Elena it was even more complicated due to her very rare diagnosis, her young age, and the COVID-19 crisis that had just started. I cannot imagine being as strong as Elena has been through this when I was 19.”

On May 18th, Elena arrived at Barnes-Jewish Hospital to have surgery. Dr. Goodwin knew how important is was for Elena to have her mom with her for this major surgery. COVID-19 forced hospitals to make visitation restrictions, but he made arrangements to make sure Elena’s mom was able to be there with her.

After surgery, Dr. Goodwin was pleased with the results. “The surgery went great! The tumor was adherent to her spinal cord, but we were able to remove it all without any problems. The tumor came out and her spine was reconstructed with rods, screws, a cage and bone graft without a problem.”

After surgery, Elena says her back was not the problem. She had lost all feeling in her right hand and was told it was because of positioning pain.

Dr. Goodwin explains, “Towards the end of the surgery, we had changes in the sensory signals in her right hand. This was strange because we were not working anywhere near the nerves to her right hand (which are in the neck). We adjusted all the things that could affect these nerves, and repositioned the arm to make sure there was no pressure anywhere. Unfortunately, she woke up with some numbness in that hand, most of which quickly resolved postoperatively. The most likely reason for this was position of her arm during the surgery, in which case we were confident it would return to normal or near-normal sensation/function.”

Elena says that the next week was the hardest week of her life. “I am right handed and I love to write so losing the feeling in my hand was devastating. I had no control over my right hand, it would fall on my face if I tried to lift it up.” She says she leaned on the medical staff a lot, and everyday Dr. Goodwin came by and saw her. “I couldn’t have asked for a better team. I never really knew how important nurses and doctors were until that week. I was very impressed with the level of care. I was speechless at how well I was taken care of.”

However, Elena says mentally, it was a big challenge. “I was 19 years old and would have to relearn how to walk and write. In addition to the frustration of the recovery, the isolation due to COVID was difficult. I was grateful that my parents were able to be there, but it was hard not seeing everyone else. I couldn’t see my grandparents, my boyfriend or friends.”

Back at home, Elena was not initially allowed to do much in order to heal properly, but she was able to start therapy a few weeks after her surgery. Now several months post-op, Elena has made nearly a full recovery. She is still under some restrictions so her spine can heal (temporarily taking a break from some activities like golf). In the meantime, she has returned to being a college student, now tumor-free, and taking online courses as a sophomore at Southeast Missouri University. She also found a few new interests: she recently got a new puppy, and now takes regular three-mile walks. After overcoming a tumor that was compressing her spinal cord, these walks are now her favorite part of the day.

Dr. Goodwin says, “Elena is a special patient and special person. She faced an unfathomable amount of adversity at one time, and at the age of 19. Not only did she have a tumor in her spine that would need to be resected with a large spinal reconstruction, but she had to do it during a worldwide pandemic. And to make matters more complicated, her tumor was so rare that only five previous tumors like this have been reported in the spine. Somehow, she has turned this incredibly difficult situation into such a positive thing. Right away after surgery she was up and out of bed, sitting at a desk writing thank you notes to staff, even though her hand felt numb! That card still sits on my desk today. As a father, she fought through this the way I would hope my daughter would - with grit, grace and gratitude. I have no doubt great things are in her future.”

Elena says, “Dr. Goodwin saved my life and I am forever thankful for him and his team. My family, friends, and the staff at Barnes-Jewish Hospital have helped me overcome this crazy journey and it is something that I will never forget. I have a picture of Dr. Goodwin that I printed out and have hanging in my room. It is something that I will never take down. He is my hero.”