Ellie’s cancer treatment and surgery expenses!

Update: 

After being in remission for almost one year, my most recent set of maintenance scans showed some suspicious growth in my original tumor site. I had a followup biopsy, which unfortunately confirmed that my cancer is back. The cancer cells they tested from the tumor are once again high grade - meaning aggressive - and I spoke to my sarcoma doctor at Moffit about the results. They held a meeting with a board of specialists, which included my oncologist and other doctors who have experience with this kind of cancer, and based on the short time frame in which my cancer returned, they are recommending chemotherapy, alongside another surgery. 

I have a meeting in two weeks to discuss what this treatment plan would entail. I have many new and scary factors to prepare for, including fertility preservation, the physical and mental toll of chemo, how long I would be undergoing it, and how disabled yet another surgery on my arm would leave me. After they removed a few centimeters of my median nerve during my last surgery, the left half of my hand is barely functional as it is. I am in unexpected and uncharted territory, whilst also attending school. I will likely be unable to work, and with the new year coming up, I have a high deductible to meet before my insurance begins to cover treatment and other appointments. 

Any donations will be going towards transportation, deductible costs, boarding for the days I need to be close to the cancer center, medication for pain management, maybe a cool hat when I inevitably go bald, and so forth. 

I’m not happy to be in the position of asking for support again, but I’m not sure I can do this on my own. 

Any and all donations, reposts, and kind words are appreciated. Thank you for reading, and happy holidays

-

Hello everyone, my name is Ellie. I’m 19 years old, and on July 13th of this year, I was diagnosed with an extremely rare kind of soft tissue cancer called synovial sarcoma. I have recently started 5 weeks of daily radiation treatment to control the growth of the cancer before I have to undergo a second surgery. 

Since I cannot work during treatment, the donations I receive will go towards animal care, personal needs such as medicine, easily-accessible amenities as I try to relearn how to use my hand, and treatment costs. I’m lucky to have health insurance, but even then, the out-of-pocket copay quickly adds up. I appreciate every single donation and share! ❤️

The long version: 

About a year and a half ago, I developed a sensitive area in the soft part of my right elbow. The pain soon extended to my fingers, and I was brushed off by medical professionals who said it was likely nothing more than carpal tunnel, or a compressed median nerve. Being called a hypochondriac was very embarrassing, and impacted my decision making in terms of seeking help. 

As the year passed, the pain grew worse, and after I began to feel extreme swelling in my elbow, my middle finger went completely numb. I finally found a surgeon that took the time to talk to me, and referred me to get an MRI for the affected area. At the time of the MRI, the pain in my fingers and arm had grown so intense that when it flared up, I would black out for a few seconds.

When I returned to the surgeon to go over the results of the imaging, he sat me down and told me they found a tumor in the exact place I had been having pain. At the time of discovery, it measured 5.4 cm, or the size of a small lime. He referred me to an orthopedic oncologist and surgeon to do further testing, and get it removed.

Finding out it was a tumor was the first big shock. Up until that day, I thought it was just swelling due to a damaged nerve, but the pain was actually being caused by the compression from the tumor on my nerves. I ended up taking my MRI results to Moffitt Cancer Center and seeing their sarcoma specialist. They were wonderful there, and informed me that the tumor looked like a benignity called a schwannoma. These grew outside of nerve sheaths, weren’t cancerous, and typically could be left alone unless they were causing pain. Since it was though, they quickly scheduled surgery, and I was back within a week.

The day of my surgery, they opened my arm up and found that the tumor had grown into my nerve fibers. The operation took longer than scheduled, but they were able to remove 3.5 cm of the mass. This shouldn’t have been a problem, because as long as they got the majority of it out and decompressed the nerve, my pain should’ve subsided.

Moffitt has a policy of mandatory pathology on all removed masses. I knew to be expecting a call sometime during the week, but I was looking forward to them confirming that it was benign.

On Tuesday, my surgeon called me with the news. The mass they removed was cancerous - they said it was something called a malignant peripheral nerve sheath tumor - and not only that, but it was a high grade (aggressive) tumor as well. Here’s a picture of my final pathology report giving the diagnosis:

I now need to go in for another surgery soon, as well as CAT scans of my lungs, and a full body MRI to see if the cancer has spread elsewhere. I have to get the affected nerves removed in my right arm, which controls my dominant hand. I will more than likely never gain full feeling and strength in my hand again, if even at all. An above-elbow amputation will be considered as well, depending on how far the cancer has gone and if it’s still localized in my arm. After the surgery, I will either receive multiple rounds of radiation therapy, or chemotherapy.

Dealing with this news has been hard on everyone. Synovial sarcoma is one of the more rare and more aggressive types of cancer. Sarcoma cancer occurs in only 0.4% of people overall, and synovial sarcoma occurs in only 4% of all those who develop sarcoma. I am one of 80 unlucky people, on yearly average, to be diagnosed with this kind of cancer. Given the rarity of the disease, treatment options and research are both limited, causing devastatingly low 5-year projected survival rates of only between 20-50%. Adversely, the recurrence rate, even after remission, is an extremely high 75%.

I don’t like to think of myself as a statistic, but it’s hard not to feel upset by how low my chances are at being alive, even 5 years from now. I don’t want this to be a sob story, but my unavoidable morality is something I never wanted to have to ever face, as a 19 year old girl.

I sincerely thank you for reading this far, and please do not donate if you don’t have the means to comfortably do so. Just a share or kind message would be wonderful. I hate accepting money, but given the circumstances, I don’t want to worry too much about the financial aspect of trying to fight this.

Thank you all so, so much,

-El.