Retroperitoneal Liposarcoma

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RE: Retroperitoneal Liposarcoma

by sreekumar on Fri Nov 20, 2009 04:27 AM

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Dear Leslie,

I am sorry to hear about yur mother.

I am having similar problem for my 85  year old  father in law.

My father in law , who is now past 85 years had his first surgery - removal of a giant liposarcoma of the rt. thigh in RCC, Thiruvananthapuram, India  followed by radiotherapy for 6 weeks in 2006. Then he developed a tumor in his left thigh which was also removed next year as it was small, no radiation was done. With in 2 years he had some discomfort in the abdomen and a Ultrasound followed by CT showed a mass in the lesser sac next to the stomach which was removed in 2009 March. Only  90% of it could be removed as it was too close to the stomach and pancreas. Before surgery the CXR and MRI showed 2 small ? secondaries  in the periphery of the right lung (?pleural) and in the spine (D11 - which was irradiated before surgery for 5 days.)


The pathology report for the thigh tumor and abdominal was Liposarcoma (dedifferentiated type ?).


Otherwise my father in law was keeping robust health, his cardiac functions were very good, he has no diabetes and was never admitted before these episodes for any ailment. He has some hypertension( Developed late in life) with atenolol and an ace inhibitor .


Now he has developed very early satiety and epigastric discomfort on eating and also a troublesome dry cough which indicates his abdominal tumor is back and may be the lung secondaries are growing too. The latest ultrasound done on 9/11/09, showed the abdominal tumor is back (approx20cm), though the lung secondaries haven’t increased in size.


With this scenario of multiple tumors related to the liposaroma, we took him to Bangalore Instt of Oncology to examine whether Cyber Knife treatment could be of any use

As suggested by them a PET SCAN and DOTATATE test was conducted and the report said that neither method is possible for him .

Now he has been adised to undergo surgery (if the family and patient desires so) and followed by chemo. and Cyber knife for the nocules in the liver.

We were told that CK would nt be of any help in a tumour of the size of more than 6 cms.

Hence a debulking surgery and radiation and chemo are advised.

What i understand from you mother's case is that she had undergone chemo. 

Was she able to withstand the side effects and how did she she manage it. Was any palliative care taken simultaneously?

 I would really appreciate if you can tell me about that.

I had contacted online  the Chicago Cyber knife centre, Tata Memorial in Bombay and Appollo Hospital in Madras . While all of them responded with compassion there seems to be a consensus  that at the age of 85  to undego another surgery is quite risky.

We are in a dialemma as what option we sholud take.

Leaving him as it is would make him suffer daily with growth increasing day by day pressing on other organs.

regards,

Sreekumar
 
 

 

RE: Retroperitoneal Liposarcoma

by retired2008 on Sat Apr 10, 2010 04:58 AM

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My wife has been fighting a retroperitoneal liposarcoma for six years . She is 65 years old. She has had two resections, one in 2004 and one in 2007. The second resection was done at Sloan Kettering  Memorial Hospital in New York City,  In 2008 she was in a trial at The City of Hope  with Nelfinavir but it did not help. In June 2009 we went to Guangzhou China where she had HIFU, Radiofrequency ablation and ultrasound. It did appear the tumor became necrotic but unfortunately a complication of a hole in the common bile duct  occurred and she has required a stent . Now as a result of the treatment in China the doctors do not know how much of her tumor is alive and how much is dead.. She recently has had some fevers and will require another ERCP to check the common bile duct because there was some bile duct dilation on her last CT. This could be tumor pressing on the bile duct or sludge in the stent. Her PET scan does not show enough activity to light up. The cyberknife is just for small areas and therefore will not help. Our big decision is whether we will go back to China. That whole trip is quite fatiguing. I am a physician and it was a difficult decision to make to visit China but in many ways they are ahead of us in cancer care. The doctor we saw in China spent two years at MD Anderson Hospital in Texas for training.

RE: Retroperitoneal Liposarcoma

by vogriphach on Mon May 10, 2010 01:20 AM

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On Apr 10, 2010 4:58 AM retired2008 wrote:

My wife has been fighting a retroperitoneal liposarcoma for six years . She is 65 years old. She has had two resections, one in 2004 and one in 2007. The second resection was done at Sloan Kettering  Memorial Hospital in New York City,  In 2008 she was in a trial at The City of Hope  with Nelfinavir but it did not help. In June 2009 we went to Guangzhou China where she had HIFU, Radiofrequency ablation and ultrasound. It did appear the tumor became necrotic but unfortunately a complication of a hole in the common bile duct  occurred and she has required a stent . Now as a result of the treatment in China the doctors do not know how much of her tumor is alive and how much is dead.. She recently has had some fevers and will require another ERCP to check the common bile duct because there was some bile duct dilation on her last CT. This could be tumor pressing on the bile duct or sludge in the stent. Her PET scan does not show enough activity to light up. The cyberknife is just for small areas and therefore will not help. Our big decision is whether we will go back to China. That whole trip is quite fatiguing. I am a physician and it was a difficult decision to make to visit China but in many ways they are ahead of us in cancer care. The doctor we saw in China spent two years at MD Anderson Hospital in Texas for training.

Hi retired2008. Sent you a private message. Thanks!

RE: Retroperitoneal Liposarcoma

by Leslie_Y on Fri May 28, 2010 07:46 AM

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Hello---

In my last post I mentioned that my mother Mimi, nearly 83, had a CT scan in October that showed growth of her RLS.   A number of things have happened since then.

She made the decision to try Temodar oral chemotherapy which she began on January 1.  She was on it 42 days without problem, and due to some lack of monitoring and miscommunication between her and the Cedars cancer center, she continued on the Temodar an additional 17 days!   When she began having nausea, vomiting and inability to eat, intiially we attributed this to the cumulative effect of chemo, but this was not what was going on at all.

Mother stopped chemo and got hydration, but the symptoms did not abate.  An Xray did not show any intestinal obstruction that would explain her stomach distension and inability to keep anything down.  Finally we went to the ER, and a CT scan showed an obstruction.

My mom had surgery on March 10 and has been fighting to recover ever since.  Early on she made progress in an inpatient hospital rehab program, but then after discharge to skilled nursing, became sick with a "C. diff" or Clostridium difficile infection.  Rehospitalized 3 weeks for that.   Then discharged but back to the hospital again 2 days later, now with a blood staph infection and VRE infection of the urinary tract, as well as colonization in the intestines (rectal swab).

When one is elderly and undergoes chemo for cancer, the physicians have an obligation, but rarely tell the patients or families, the risks of contracting serious baterial infections that are a byproduct of hospitalizations and/or antibiotic therapies.

My mother is very debilitated from these bouts with infections, and will never be the same again.  Though her small bowel surgery (and hernia repair) was considered "successful" (no more obstruction, incisions healed well),  she is so weak from deconditioning (and malnutrition from being NPO (no food by mouth) or on TPN (IV nutrition) that she is at risk for acquiring other infections.

She has lived over 3 years since the diagnosis of this cancer (and probably longer, before it was diagnosed), and has enjoyed decent health, fully independant and without pain.  But in the aftermath of this surgery and 3 hospitalizations, it is more likely that she will have an acute event due to infection than "local failure" from the tumor itself.

I am still hopeful she can enjoy quality of life, but clearly she has declined since March and will not return to her baseline.

Leslie

RE: Retroperitoneal Liposarcoma

by laivly on Thu Jun 03, 2010 05:13 PM

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Hi Leslie,

I hope your mother is doing better. My father was diagnosed in Jan2008 and he was treated at UCLA. They have a sarcoma center and we have been very pleased with the treatment there. My dad had radiation though, not chemo.

Is your mother able to eat through the mouth now? My BF's father was very weak after his surgery and he was prescribed a medication to help stimulate his appetite. It was very effective. Perhaps that would help your mother in some small way? If you need the name, please let me know. I will find out.

RE: Retroperitoneal Liposarcoma

by nevdal on Fri Jul 23, 2010 11:50 PM

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My Dad was recently diagnosed with high-grade pleomorphic liposarcoma in the retroperitoneal area (confirmed with a biopsy and detected in a CT scan). There're 2 big masses, one 9x12x14.5 and 8x9cm in the right lower abdomen/upper pelvis area. The larger mass engulfs the right ilias artery and vein and is also compressing the other arteries and right kidney and also displacing the bowel loops.  The diagnosis did come as a surprise to us since Dad is pretty active and hasn't had any major disease.

The local oncologist (we live in Southern California) that we visited offered chemo as the treatment option as he thought both surgery and radiation would be too intrusive and complicated at this stage. We also visited the sarcoma specialists at UCLA, City of Hope and Cedar Sinai to get a second opinion and all concur that surgery was not an option because of the way the blood vessels are engulfed by the tumor and instead recommended a combo of chemo + radiation to get the tumor to a more manageable size. We're getting a second biopsy done to reconfirm the type of sarcoma.

In any case, it looks like we're stuck with getting chemo/radiation in an effort to shrink the tumor. From all the research I was doing online, looks like liposarcoma is not too responsive to chemo. Also found some alternative treatment options like wheatgrass juice and Tibetan medicine. So just wanted to know what different experiences people had with each treatment option for liposarcoma and also what to expect in terms of side effects/behavioral changes? Dad is keeping up well so far. Another complication is that he has DVT (blood clot) in his right leg so he can barely walk and is currently on pain medication, blood thinner (warfarin) and laxatives (for the constipation).

RE: Retroperitoneal Liposarcoma

by Shawshill on Mon Aug 09, 2010 03:16 AM

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I am sorry to hear about your dad, my wife was diagnosed with Retroperitoneal Liposarcoma in November 2009. She had surgery in Jan. this year. They removed a 30cm mast along with her left kidney, and a third of her colin. She is only 44 years old with a 8, and 13 year old at home, it was a huge blow to us. She has had 3 CT scans since and we are planning her next surgery as we speak.

We went to the Mayo Clinic for a sencond since our hospital is wanting to remove the solis mucle along her spine this time. The reports were low grade at the first hospital, they were looked at again at Mayo Clinic to discover an area they believe to be high grade.

We go to meet to discuss radation during surgery, and then follow up with Chemo. My wife just would like to see the kids get out of high school at this point. The doctors have told us there is a good chance it will return and possibly spread.

We are glad that the Mayo Clinic is considered cutting edge and is only a 3 hoursdrive, makes it hard juggling work and kids though.

If anyone has any insight I would love to hear.

Thanks,

Tim

RE: Retroperitoneal Liposarcoma

by Shawshill on Tue Aug 10, 2010 12:10 AM

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We recieved new news today. Called to tell us they want to start radation next week, 5 days a week for up to 5 weeks. Having to leave my wife alone in Rochester, MN is my biggest fear right now.

They want to try to shrink the tumor before sugery. Has anyone had this done???

 

Tim

RE: Retroperitoneal Liposarcoma

by nursenana on Tue Aug 10, 2010 01:01 AM

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My daughter is 40 and her two surgeries were for tongue and lymph nodes but I want to assure you that Mayo Clinic in Rochester, MN is the greatest place ever. We were just so glad that we went there. They have every known test that a person can have and are so fast in acting that you don't have the dread and worry. You see the results of all the tests so quickly.

You know from living in MN that winter comes quickly. We were there in Nov, Feb, April and July. In those winter times we did not have be outside in the snow. Thanks to that great subway system.

We stayed right there at Kahler Inn and Suites which was connected through the subway system. Soon as all the tubes were removed we were released to the hotel so she could rest and get strong enough to make a plane ride back to CA.

I would suggest if there is any way possible to try and have someone with her while she is in the hospital. I never left my daughter for a minute. There is so much help they need because they won't be there long at Mayo.

If at all possible request a private room. It is only around $20 more but you don't have visitors in and out and you don't have to share a bathroom and if you choose you can stay all night. Not possible with a semi private. Mayo is "no frills".

Best of luck to you and I hope and pray that not only you and your wife see the kiddos graduate from high school and college but that you see them married and giving you grandkids to love. Same wishes I have for my 9 and 12 year old grandchildren and wonderful son in law and daughter.

((((BIG HUGS)))

Nurse Nana

RE: Retroperitoneal Liposarcoma

by Shawshill on Thu Aug 12, 2010 03:13 AM

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Nana,

Thanks for your insight, we are not in Mn but we are close in DesMoines, IA. We leave at 5:30 in the morning to drive back up to Mayo to meet with the Radiation Oncologist and the Medical Oncologist.

Sounds like, start radiation Monday and meet with the Surgical Oncologist Tuesday.

Its hard to keep up with the appointments.

Tim

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