@colleenyoung
I began this journey in 2008 when I was diagnosed with a large retroperitoneal tumor. I was part of a trial designed to shrink the tumor before they tried surgery. I was followed at UNM in New Mexico. I was treated with gemcitabine, docetaxel and avastin for I believe 8 treatments. Then they removed the tumor. The felt the treatment was successful in that there was significant cell death. It did not however shrink the size and I do not remember the size but it was a 9 lb tumor.
I was followed at UNM until 2018 when they decided to discharge me because there had been no reoccurance.
Then October, 2025; I had symptoms of what I thought could be appendicitis
but I could feel a lump in my lower abdomen in the same spot as my previous tumor. They did an ultrasound and identified the tumor. At that time, I was experiencing difficulty getting a response from UNM so I self-referred to Mayo and they got me in within 4 days. I was seen in the hepabiliary department and surgery was planned for January, 2025. They felt they had clear margins except for one area near my kidney. The doctor did not want to remove that kidney because I also had kidney disease. She felt she had gotten the cancer though and nothing else was recommended at that time.
I was followed at Mayo every 3 months but missed my May appointment because I was in the hospital receiving surgery for a bowel blockage. I have an ileostomy from the surgery in January where they also removed my appendix.
I went back for my 3 month check up in October really not expecting anything to be a problem. However, they found several large nodules and multiple smaller ones in both my lungs as well as another tumor retroperitoneal. They did a biopsy of one of the nodules in my lungs and discovered the liposarcoma had metastasized. My present diagnosis is Metastatic high grade dedifferentiated liposarcoma with extensive aberrant desmin expression.
The liposarcoma team thought the best approach was systemic and recommended doxorubicin but did not want me traveling back and forth between New Mexico and Mayo for treatment they felt there were to many risks so they suggested I find a facility closer to my home.
Unfortunately, I again ran into road blocks at UNM and decided to go down to MD Anderson. My intent is to find out what they would offer for treatment and how long that might extend my life. I think that is it. I tell people now I am a miracle because I was cancer free for 17 years.