Type of Sarcoma: Liposarcoma of the neck
Date of Diagnosis: September 2010
September 2010 – I have just begun my journey. I am not sure the first time I felt my lump, but I do remember the first time the alarm bells went off. It was Sept. 12, and I had been having neck pain and headaches for a while. I finally asked my husband to look at how swollen this area was and he said that doesn’t look right you need to go in. That is not my husband’s typical response; he usually tries to calm me down. That is when I knew something was up. I have had several people in my family that have had lipomas, and so my mom assured me that it was likely nothing to worry about.
I went to my doctor Sept. 14 and was told the same, likely a lipoma, but let’s do an MRI to see how big it is and where it is. I was told I could choose a general surgeon or an ENT surgeon. I had already seen an ENT doctor, so I chose him. I did not expect to hear from my doctor the next day as I knew she had the day off, so when I saw the number I started to worry. The radiologist had called her at home and said I needed to get in it didn’t look right. The ENT doctor wouldn’t touch it in St. Cloud but referred me to the U of M where I met Dr. Emiro Caicedo – love him!!!!! He, too, said this just doesn’t seem malignant, but I knew at that point it was. They did a fine needle biopsy where the results were in conclusive, but I hear them talking in the hallway that it didn’t look right. They mentioned spindle cells, which I later found out you do not want to see. Then it was off to the core biopsy. I remember lying on the table and crying as they looked at the biopsy, because I knew what they would find. Sure enough it was malignant. I found out two days later it was Liposarcoma, very rare to begin with, but much more rare in the neck, and at my age of only 27. I felt like the winner of a very cruddy lottery.
The next step was back to Dr. Caicedo’s office after he met with the tumor board. Unfortunately they had to clear recommendation as to whether to do radiation first or surgery. I knew it was getting close to my spine and I wanted it out, so I pushed for surgery. A quick PET scan and a meeting with the radiologist and I was off to surgery Oct. 13, less than one month after my first MRI. My surgery was very successful. They were able to remove a softball-size tumor from my neck with negative margins (they got it all).
Unfortunately from laying on my side for the surgery I got a “Rabdo” cush injury on my leg and by the rib cage, so I was in a lot of pain and was getting pumped full of fluids to prevent kidney failure. I made it out of the hospital in just under one week and am now healing and going through physical therapy and acupuncture as I continue to have the headaches and need to gain some strength back in the right side of my neck and shoulder.
I start radiation in about three weeks and look forward to that seven-week battle. I hope one day I will be able to post on here as a survivor, but for now the battle continues. I am thankful to have an amazing and understanding husband, Andy, and 3-year-old daughter, Olivia, who stick by my side, and a large support group who I could not be doing this without. It is a bumpy road with many bumps yet to come, but I will continue to push through.
Caringbridge: Elizabethwipper or e-mail firstname.lastname@example.org