Retroperitoneal Liposarcoma

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Retroperitoneal Liposarcoma

by Leslie_Y on Sat Sep 22, 2007 12:00 AM

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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:  

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

.   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

 

 

RE: Retroperitoneal Liposarcoma

by Lovingwife on Tue Oct 09, 2007 12:00 AM

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Leslie, I just read your message and I am feeling your pain. My husband was diagnosed with the same thing October 2006. He had hernia repair in Sept. 2006 and just couldn't get his strength back and was very tired all the time. He began having pain in his stomach. He had no appetite and started losing weight fast. He went to a Gastroenterologist and he scheduled him for a Colonoscopy & Endoscopy. That didn't show anything but the doctor did discover that his pancreas appeared to be swollen so scheduled a CAT scan the next day. The call came a few days later that he had a large tumor in his stomach and referred him to a surgeon. After examining my husband and the scan he determined that he had Retroperitoneal Liposarcoma. He didn't schedule his surgery until November 28, 2006. During that time his pain got worse, he kept losing weight, had no appetite and his stomach was swelling daily. The surgery only took about 4 and half hours. He removed a 20 lb tumor, left kidney, spleen, left adrenal gland and half of his pancreas. He was in really bad shape. He has had 2 scans since then and is scheduled for his 3rd on October 22, 2007. He went back to work on March 1st but he has no energy and worries all the time. He is scared all the time. He still has a lot of pain in his stomach but he has put all of his weight back on. He was 57 when he was diagnosed. I don't know what the future holds but there isn't a day goes by that I don't think about him dying. This has changed our lives so much. I wish your mother all the best and I can totally relate to what you are going through. I try to read all I can. I want to know as much as I can. I want to be prepared for what may come. Bobbie (WV)

RE: Retroperitoneal Liposarcoma

by inomylove on Sun Dec 30, 2007 12:00 AM

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Hello, I have this cancer now for 30 years....would love to speak with you,,,,if that is ok with you .  Let me know and i will call you.

Roe

RE: Retroperitoneal Liposarcoma

by inomylove on Thu Feb 28, 2008 12:00 AM

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Hey Leslie, It's Roe i will call you soon to see how your Mom is doing. Let me know if that is ok with you.

 

Roe

RE: Retroperitoneal Liposarcoma

by linanne on Sun Sep 21, 2008 12:00 AM

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Hi Roe,

 

my brother in law was diagnosed with liposarcoma three years ago and had a lump removed from his lower leg.  He has just found it has come back in his neck and is scheduled for surgery later this week.  I have been scanning the net looking for success stories for people with liposarcoma and there seem to be very few.  It gave me some hope when I saw that you have lived with it for so long.  I just wondered if you only had one tumor and also if there is anything you did that you felt helped you to avoid its return.

 

Kind regards,

 

Linda

RE: Retroperitoneal Liposarcoma

by inomylove on Sun Sep 21, 2008 12:00 AM

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Hi Linda, Please give me a call, or i can call you....here is my number i would love to talk with you about it.

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

    Roe

RE: Retroperitoneal Liposarcoma

by sa00450 on Sat May 09, 2009 12:00 AM

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Roe,

 

We received a diagnosis for liposarcoma after surgery to remove a mass from the kidney and are all terribly afraid.  May I contact you?

 

 

RE: Retroperitoneal Liposarcoma

by Leslie_Y on Thu Oct 08, 2009 12:00 AM

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Dear Readers on this board:

I am sorry to report that my mother Mimi had not very positive results of her last CT scan.

Mom finished chemotherapy in August 2008 and her fall CT scan showed a reduction in size of her tumor.   Mom went til June 2009 with good CT results, but in June the tumor seemed to have increased slightly.   The last CT end of Sept showed again more growth.

We are seeing her oncologist in the next few days to discuss options for chemo again.   Mom is now 82 --- doing very well, driving, enjoying life, but is starting to have a little back pain, which is a common symptom of retroperitoneal tumors (pressing against spinal nerve, or Illiac area (?).

Surgery is not a very viable option due to its extensive nature, Mom's age and that she would lose a kidney, making dialysis a probability.

It is rather lousy not to have many options, but we are hopeful that, as in the last time that Mom underwent chemo, the tumor will shrink again and allow her another lease on life.

I know the statistics are poor when looking at 5 year survival for patients with nonresectable, dediff. liposarcoma recurring tumors.... but there is always a minority percentage that ends up on the right side of the statistics.

I welcome input from anyone here about new drug protocols for treatment of this type of cancer.

Thanks for listening!

RE: Retroperitoneal Liposarcoma

by butman on Sat Oct 24, 2009 01:24 AM

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I was diagnosed witht he same thing in dec 2007. Started with a ten-inch tumor which was wrapped around my kidney. Have had two surgeries. First one removed a kidney, second one six months later removed portions of my ribs. Small recurrence after another six months. Go back in November for another catscan.

Have been to the premier doctors for this disease at Memorial Sloan Kettering in NY and Dana Farber in Boston. All agree that chemo and radiation are not effective and cause more problems. Surgery is the only effective treatment. If that is no longer an option, there are some trials currently at Dana Farber that you might want to explore. Doctors name is Wagner.

I wouldn't let that surgeon touch her again. The thing is once you cut into the cancer, it actually allows it to spread so it is vital that you get someone who knows what they are doing. This guy sounds incompetent. Get somewhere that specializes in this type of cancer. It is rare so most doctors do not see many cases. You want to be someplace where they see them all day every day.

You can live a long time with this type of cancer. I just wrote a book about my experience. It is called I Don't Buy Green Bananas and is available on Amazon.com if you are interested.

 

Joanie B.

RE: Retroperitoneal Liposarcoma

by howell58 on Mon Nov 02, 2009 02:35 AM

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Hi Joanie.

My husband was diagnosed with retroperitoneal liposarcoma in Sept. 07. Unfortuntately, it was first diagnosed at renal cell cancer because it had attached to his kidney. After removing the kidney and the tumor, pathology was baffled and referred out to Brigams Womens Hospital in Boston.

Got referred to Sloan Kettering because they are specialized in this type of "rare" cancer.  My husband had a surgery to remove a small (1cm) spot on his lung one year later. They never got all the residual cancer out the first time (unclear margins I suppose they call it) so he has had CT scans every 4 months since.  The doctor did tell us that another surgery to that area would be necessary in the near future but he was watching its behavior, etc. on each of the scans. Now, it has grown 1 cm and he is scheduled for surgery on the 16th of Nov.  I have done a lot of research on the internet myself about this cancer.  What I find is so frightening, especially when it is not totally resected the first time.  We are 47 yrs old, with 2 children, 15 and 12.  We are so scared and do not have much family support. Feel like we are going it alone a lot of the time.  Do a lot of praying, but have days where I just fall apart. Would love to talk with you, see how you are doing, and hope you can provide us with some hope from your experience.

Thanks and God Bless,

Sue

 

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