Hello out there.
My mother has retroperitoneal liposarcoma, diagnosed since late April. I am looking to connect with other people with the same cancer or have a loved one who is dealing with it. Here's my my mom's story.....
Mom just turned 80 but looks and behaves like she is at least a decade younger. She and her family have had a rough year, beginning with her surgery.
Her tumor was discovered incidentally, in January, when a workup for gallbladder surgery revealed no gallbladder problems, but instead a mass of about 3 cm near the renal vein. Surgery was scheduled because a needle biopspy was deemed too risky because of the vein.
At the end of March, 2007 Mother had surgery at Brotman Medical Center (Culver City) to remove this mass; It was a complicated surgery in which she nearly died, losing 5 pints of blood. The surgeon was not able to completely resect the mass, and told us so following surgery. However, he said he thought there was a chance that the mass was benign (he was either placating us or incompetent. Masses wrapped around renal veins are nearly always malignant.)
The frozen section pathology revealed a sarcoma, "favor(ed) low grade" in the grading of this tumor. However, the tissue was also sent to Stanford University and 3 weeks later, we got a different diagnosis. It was deemed a dedifferentiated liposarcoma (high grade) with a propensity to metastasis.
Her Medicare HMO sent her to the group's oncologist, Dr. David Plotkin, who called the cancer "indolent" and basically wanted to "watch and wait". He didn't want to do immediate imaging studies but instead wait until she had healed from surgery.
Imaging studies in July revealed that the tumor had grown. Plotkin still wanted to do nothing, but during a consult said that mother had "lived a good long life" (!!!!). (Interestingly, Mom's surgeon said he wanted to do another surgery and remove her left kidney to try to get the cancer). Plotkin seemed miffed that we wanted a 2nd opinion, and said "You won't find anybody better than me". We mentioned we were interested in the clinical trials at City of Hope, using protease inhibitors (used for HIV patients. Plotkin patronizingly said "everyone is trying protease inhibitors these days". He was unhelpful and unwilling to try anything on our mother. We fired him and moved on.
We subsequently went to City of Hope (Drs. Chow and Benjamin Paz, surgical oncologist) and Cedars-Sinai's sarcoma center (Dr. Charles Forscher and Dr. Jason Cohen).
City of Hope does not feel that Mom's tumor, which has grown 4 cm from July to September 18, is resectable. They also do not feel that radiation and chemo have any demonstrable effect in prolonging survival for a person with a high grade retroperitoneal liposarcoma. Radiation is merely to palliate symptoms, and Mom has none at this time. They stated that patients who do radiation/chemo actually do 3-5% WORSE. Their only recommendation is that Mom participate in the clinical trial. This obviously was very, very discouraging. We were told (which confirmed my Internet research) that patients with dedifferentiated liposarcomas in the retroperitoneum live an average of 18 months from diagnosis.
The radiation oncologist we saw at 21st Century Oncology (Dr. Patricia Gordon, in Bev Hills) was a little more positive. She will work with the Cedars-Sinai sarcoma center, and wants to start my mother immediately on 7 weeks of radiation (IBRT ?? an expensive and very focussed radiation beam) and wants to "sensitize" the radiation with some chemotherapy. She has made no guarantees, but she believes that the radiation may halt the tumor and even shrink it, at least to prevent pain that may develop. Dr. Gordon thinks this treatment may prolong my mother's life.
Thank you for bearing with these details. If you have anything to share about experiences with and treatments for retroperitoneal liposarcoma, please email me directly to:
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. Mom and I will be grateful.
I hold to the hope that Mom will be in the small percentage of patients who have survived longer with this disease. She is a wonderful, vibrant woman (who still works!!) with 3 young grandkids (her daughters are over 40 moms) and alot of living left in her. Her own mother died at 95 (ironically from an abdominal tumor), so we always figured Mom will have a very long life.
One other note.... Mom's husband of 58 years, our dad, died 2 days after mom's 80th birthday of complications from end-stage Alzheimer's. She'd taken care of him up until her March surgery, seven years of caregiving a memory-impaired spouse. It's been a rough year........and our mother deserves a chance to survive and enjoy life now for herself.
Thank you for listening. Leslie