Type of Sarcoma: Well Differentiated Liposarcoma
Date of Diagnosis: January 2017
Location: Colon
Looking back, I think the liposarcoma was slowly growing on the outside of my colon for several years before symptoms became severe enough to be concerned. I recall some minor discomfort, usually positional especially when driving. They would disappear as quickly as they had begun. Then in early November of 2016 I began to have a very different pain in my gut, one that was a burning sensation that would not go away. At the urging of my kids, I visited my GP who prescribed oral medicine for “gas”.
One of my grandsons was attending college in Fairbanks, Alaska and had a voucher for airline tickets, and bought me a round trip ticket from Des Moines to Anchorage where he met me for a 4-day visit the first week of December. Alaska was the only state left that I hadn’t been to so I went even though I felt I was getting worse. We had a great time in spite of the circumstances and when I got back home, I called the GP and a CT scan was ordered.
Shortly before Christmas, I had the CT scan and received a call the next day explaining there was a large mass on the outside of my colon with at least 3 more further down each decreasing in size and that this would require surgery. I was able to choose the colorectal surgeon who ordered a colonoscopy prior to the surgery. The colonoscopy revealed the growth had pushed against the colon so hard that it was almost blocked.
I had a major bowel resection January 3, 2017 where approximately 1/3 to 1/2 of my colon was removed. The surgeon told my wife that the growths were very unusual and were “hard as rocks”. Local labs could not identify the growths but said there were “unusual cells” so tissue was sent to Mayo for a definitive diagnosis that came back as well differentiated liposarcoma. The primary site of the cancer was so rare that I was only the 10th person worldwide fitting that category.
I was referred to a local oncologist who explained the rarity of what I had, and we agreed a referral to Mayo Clinic in Rochester, MN would be my best treatment option. I asked if this was going to kill me and was told that if it came back, I would have 6 to 24 months to live. I didn’t believe that and told myself I was NOT in denial. A referral was made to Mayo and, prior to the initial consult, I underwent a PET scan that showed no metastasis. At Mayo, I met my entire sarcoma team that included the sarcoma specialist, the surgeon, the radiologist and the head of the nursing team. I was impressed! The plan they had developed was to get scans every 3 months to watch for a recurrence. There was an area in the retroperitoneal area that they felt needed monitoring.
After the first CT scan, the area in question had no change. I believe an MRI was also performed to try for better imaging. Anyway, the “thing” being watched doubled in size from August to November and I got a call from my sarcoma team at Mayo outlining the treatment plan. It would involve 5 weeks of radiation with surgery 6 weeks after the final radiation treatment. They also said they would perform intraoperative radiation and added treatment along the surgical margins they had been using for 18 years to help reduce chances of recurrence.
I had 25 radiation treatments in January/February 2018 followed by surgery on March 22. I had an approximate 7-hour surgery where my right kidney, right adrenal gland (they were encompassed in a large dedifferentiated liposarcoma), gallbladder and 4 lymph nodes were removed. Biopsy showed a large mass of well differentiated liposarcoma, and a large high grade dedifferentiated (70% necrotic so the radiation worked) liposarcoma. The cancer had also spread to the gallbladder. I spent 4 days in the hospital where I received excellent follow-up care. The nurses had me up walking the same night and after the first 2 or 3 assisted walks, I would get out of bed (hurt like hell) and walk on my own using the handy podium. I even got up in the middle of the night and walked!
When I got home, I continued to walk outside, and I had to use a cane the first week. I went back to Mayo in July for a follow up and CT scan and I was cancer free! My treatment went back to my local oncologist who followed Mayo’s recommendations first with scans every 4 months for a year, then every 6 months for a year and then annually. Things were good until this past May when the scan showed what the radiologist feels is a recurrence in the same area as where the dedifferentiated tumor was. As my journey continues, I always recall those words of Jim Valvono – don’t ever give up.
