Support Seth Berlin's Fight Against Cancer

My name is Tricia Johnston, and Seth Berlin is my brother.

Sometime last July, our grandfather noticed that one side of Seth's jaw right below his lip looked a bit swollen. The area seemed relatively normal upon closer inspection, so Seth didn't see a doctor until seemingly unrelated health issues started to occur.

Seth saw his primary care provider on August 25, 2021. However, that area of his jaw still had a slightly swollen appearance, so his PCP ordered facial X-rays to be taken. Nothing was concluded from the X-rays taken at that time, so his PCP referred him to Dr. Penland, a medical oncologist at UPMC Northwest. None of the blood tests ordered by the medical oncologist on October 13, 2021, showed signs of cancer, so on November 11, 2021, Seth had several CT scans taken of his neck, head, and chest. The following day, he had an abdominal ultrasound since he continued to lose weight and had been having pains in that area.

There were no abnormalities observed during Seth's abdominal ultrasound. However, his CT scans indicated that a "destructive lesion in the right mandible" was present. Because of this, Seth was referred to see Dr. Kim, a surgical oncologist specializing in the head and neck. Seth had a consultation with Dr. Kim at UPMC Presbyterian in Pittsburgh on November 17, 2021, and two days later, he met with Dr. Penland again. On November 23, 2021, Seth went back to UPMC Presbyterian to biopsy the lesion found in his jaw. He was told that he could expect results from his biopsy in 5-7 days. However, it wasn't until December 17, 2021, that results were made available, and it was on this day that my brother received the phone call that would immediately change his entire life.

"The tumor is cancerous."

But they still were uncertain as to what type of cancer it was.

Words like "high-grade" and "spindle cell sarcoma" were used. Still, it wasn't until Seth met with Dr. Gorantla, a medical oncologist at the UPMC Hillman Cancer Center in Pittsburgh, on December 23, 2021, that he learned just how difficult getting even that vague of a diagnosis was. After a cytopathology specialist at UPMC was uncertain of the results, his biopsy sample was sent to a pathologist at the Memorial Sloan Kettering Cancer Center in New York City for further evaluation. It was then sent to the Cleveland Clinic Taussig Cancer Center to be assessed; results remained inconclusive, however.

Despite this, Dr. Gorantla assured Seth that they were reasonably confident that it was either osteosarcoma or Ewing's sarcoma. Dr. Gorantla ordered an experimental blood test to be done that day in an attempt to rule out the latter, but, just like most of the other tests, it was inconclusive as well. On December 28, 2021, Seth went to UPMC Shadyside to have additional CT scans of his abdomen, pelvis, neck, and chest. He then went back to UPMC Shadyside on January 4, 2022, to have a second biopsy done to take a larger sample of the area than they previously had. Seth had a bone scan taken of his entire body at UPMC Greenville on January 7, 2022, the results of which suggested that the only bone mass he had was the one in his jaw.

One week later, Seth received his official diagnosis.

Mesenchymal chondrosarcoma.

This diagnosis meant that treatment planning could begin, so Seth met with Dr. Kim and Dr. Solari, a plastic surgeon specializing in reconstructive surgery of the head and neck, on January 19, 2022, to discuss all that the surgery to remove his tumor would involve. Treatment plan discussions continued with Dr. Gorantla at the Hillman Cancer Center on January 25, 2022. On this same day, Seth had a transthoracic echocardiogram done at UPMC Presbyterian, and he had a CT angiography of his fibula conducted at UPMC Shadyside after that. The CT of his fibula was required for him to have his tumor surgically removed because they will need to remove this bone from his leg so that it can be used to reconstruct his jaw.

Seth met with the anesthesiologist at UPMC Jamison today, and he is scheduled to have his tumor removed in Pittsburgh this Thursday, February 10, 2022. His surgery will be highly complex and is expected to take 10-11 hours to complete. During this time, Dr. Kim will make an incision across Seth's neck so that he can remove a wide segment of Seth's jaw, all the way from his right ear to just past his lips on the left side of his face. Part of his lymph node will also be dissected, and his fibula bone, a vein, and an artery from that leg will be removed. Dr. Solari will then use Seth's fibula, plates, and screws to reconstruct and replace the jaw segment that was removed. He will also reconstruct the nerves in that area and insert the vein and artery taken from Seth's leg to replace those removed. A skin graft taken from Seth's thigh will be used to patch the skin that was removed during this process.

Seth will be in the ICU for several days following his surgery, and he's expected to be hospitalized for at least 7-14 days. During this time, Seth will require a feeding tube and will rely on a tracheostomy tube to breathe. Our parents will be staying in the Family House Shadyside during the extent of his hospital stay. Following the successful removal of his tumor and reconstruction of his jaw, Seth will meet with Dr. Gorantla again to discuss additional treatment plans, including radiation and chemotherapy. Seth will also need to see an oral surgeon to have implants put in to replace his bottom teeth that were removed once that area is fully healed.

Seth turned 22 six months ago.

And in those last six months, Seth has had 17 appointments, and for those 17 appointments, he has driven 2,466 miles. That's the equivalent of him driving all the way from Boston to Los Angeles. Those last six months have been filled with one procedure after another, and Seth has spent countless hours in hospital waiting and exam rooms. The next six months won't be any easier. And neither will the six months after that. Or the six months after that. This isn't what life at 22 should be like.

With every appointment comes a cost. With every procedure comes a cost. With every trip, every treatment, a cost that Seth didn't prepare for. A cost that he couldn't prepare for.

Seth needs your help. Whether it's prayer, reaching out, sharing this page with others, or helping offset the insurmountable costs associated with this diagnosis, Seth, myself, and our family are endlessly thankful for any and all of the support he will and has already received.

My brother is the most compassionate and good-hearted person I know, and if anyone is deserving of a miracle, it's him. Please help to make Seth's miracle a reality.

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Mesenchymal chondrosarcoma is exceptionally rare, accounting for only 3% of diagnosed chondrosarcoma cases. Moreover, chondrosarcoma is just one of 70 types of sarcoma that exist, and sarcoma, in general, is referred to as the "forgotten cancer" as it makes up less than 1% of all cancer diagnoses.

While sarcoma cancers arise in the connective tissue, chondrosarcomas develop specifically in the cartilage cells. Of these, mesenchymal chondrosarcoma is thought to originate from cartilage precursor cells, or chondroblasts, which can arise both in and outside of the bone. Mesenchymal chondrosarcoma can develop wherever cartilage exists; however, the ribs, pelvis, and jaw are most often affected. Tumors present in the jaw are much more likely to be located in the maxilla, or the upper part of the jaw, as only 2% of jaw tumors appear in the lower part of the jaw known as the mandible.

In addition to its rarity, more than two-thirds of mesenchymal chondrosarcoma cases are misdiagnosed on initial analysis because a diagnosis of mesenchymal chondrosarcoma is extremely challenging, especially when relatively inaccessible areas such as the jaw result in small biopsies. Specifically, when these tumors occur in bone, a small biopsy sample is less likely to contain both of the appearances necessary to make this diagnosis, and the results can appear pathologically similar to osteosarcoma or Ewing's sarcoma. This is exactly what happened in Seth's case.

Surgical excision is the primary form of treatment but is considered most effective when paired with radiation and chemotherapy. This is because mesenchymal chondrosarcoma has a high rate of relapse, including both local recurrences and distant metastasis. Despite these treatments, patients remain at some risk for relapse, so undergoing scans of the area where the original tumor was located, alongside lung CT scans every three months for at least one year, is warranted. Mesenchymal chondrosarcoma is known to recur up to 20 years following the initial diagnosis; therefore, continual scanning may be recommended.

On average, 19.3 million people are diagnosed with cancer a year. Of these 19 million people, about 193,000 are diagnosed with sarcoma. There are two main types of sarcoma that exist - soft tissue sarcoma and bone sarcoma, the latter of which accounts for roughly 38,600 sarcoma diagnoses in a given year. Further, there are 20 known subtypes of bone sarcoma, and chondrosarcoma, which develops in the cartilage cells, makes up 37% of all bone sarcoma diagnoses. This means that around 14,282 people are diagnosed with some form of chondrosarcoma in a given year. More specifically, mesenchymal chondrosarcoma is one of the four types of chondrosarcoma, and it accounts for an average of 428 cancer diagnoses per year. Mesenchymal chondrosarcoma is the type of cancer that Seth has been diagnosed with. Statistically speaking, of the 19.3 million people diagnosed with cancer last year, Seth was one of 428 patients worldwide that received this diagnosis.