Retroperitoneal Lipsarcoma - Diagnosis Rollercoaster!!

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Retroperitoneal Lipsarcoma - Diagnosis Rollercoaster!!

by slrittz on Wed Sep 18, 2019 09:18 PM

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In July my husband was admitted to the hospital for complications of his Stage 4 COPD.  A chest CT that was done to rule out Pulmonary Embolism revealed a lesion in his retroperitoneal cavity.  The next day he had an abdominal/pelvic CT and MRI. In the  afternoon a surgeon came into the room and told him he had a large (9+ cm) Liposarcoma tumor. I asked "Don't we need a biopsy?" he said they will do one, but he is 99.9% sure it is Retroperitoneal Liposarcoma. 

The biopsy was done the following day. First result was for the pathologist to send out for second opinion. Second opinion results= Angiomyolipoma, a non-malignant tumor in the kidney. But he would need surgery because the tumor was large and could spontaneously bleed. He was referred to a urologist for surgery.

Brought CT & MRI images to urologist. He took one look and said "This is not angiomyolipoma, it is Liposarcoma. You need to go to a cancer center for treatment."  Referred to Loma Linda surgical oncology.

First appoint at Loma Linda. They "think" it is Lipsarcoma but want to present at "Tumor Board" for team input. Following week we were told it is retroperitoneal liposarcoma and had scheduled surgery for 2 weeks away. BTW: No new biopsy was performed. Surgeon advised that retroperitoneal liposarcoma is typically diagnosed by imaging rather than biopsy.

Prior to going along with surgery we scheduled an appointment with his pulomonologoist due to the risk of anesthesia with Stage 4 COPD.  Pulmonologist advised that my husband would most likely not survive surgery.  And, if he did, he would be on a ventilator for the rest of his life. He advised my husband that he probably would die from complications of COPD before the cancer would cause his death.

Advised surgeon that we were not having surgery. She tried to talk him into it and we advised her that until we had a pathology report actually diagnosing cancer, my husband would not be risking his life with surgery.

Three days later the surgeon called and said their pathologist's analysis of the biopsy slides (the originals taken at the first hospital) had resulted in a diagnosis of ANGIOMYOLIPOMA!!  She said that we made a "good choice" She and her team still believe it is liposarcoma.  However, they have decided to do another CT in three months to see if the tumor has grown; which will be indicative of cancer.

Has anyone else experienced this diagnosis roller coaster??? This has been so hard on him; you have it, you don't, you have it, you don't.  This is cruel!

Thank you for reading:)

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