Retroperitoneal Liposarcoma

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RE: Retroperitoneal Liposarcoma

by Shawshill on Fri Aug 13, 2010 02:19 AM

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Met with Radiation Oncologist today at Mayo Clinic. I think the have a very well thought plan.

They will do low dose radiation (25 treatments), wait 3 weeks then preform surgery to remove the residual tumor, preform radiation during surgery, then decide if they will follow up with Chemo.

I don't know alot about radiation, but she went through simulation today. They did position CT scans, they are custom building a computer program for her body. She will have to lay in exact positions everytime. They will do Port Films every treatment and claim they can get her body to with-in a millimeter each time. They even had to record her breathing so the program can adjust.

They put her on the waiting list at the hope lodge, after the first week they think she will be able to get a room. We thought it was a nice place.

Meet with surgery next week.

Tim

RE: Retroperitoneal Liposarcoma

by ironman008 on Sun Aug 15, 2010 04:43 AM

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I was diagonosed with a 10cm retroperitoneal tumor 2 weeks ago. I have been to Memorial Sloan Kettering, City of Hope, UCLA and on my way to MD Anderson for evaluation and treatment consultation. 

Can anyone comment on the risks involved with a CT guided core biopsy?  Many who posted on this bulletin appear to have had this done or your loved one had the procedure done to get a preliminary read on the tumor type and grade.

2 of the 3 centers want to do pre-operative radiation for 6 to 8 weeks around the tumor margin and where there is no margin prior to surgery.  The other center can go with or without radiation prior to surgery.

Any comments are welcome.  I am as devasted as each of you posting on this bulletin board.  I am in my mid-40's and consider myself in excellent health.

God bless.

RE: Retroperitoneal Liposarcoma

by Shawshill on Tue Aug 17, 2010 12:46 AM

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My wife is 44 and was in great shape also. They removed a 30cm tumor in Jan. , we then followed up with CT scans. They told us back in December the problem with doing a biopsy, is with this kind of tumor you could do multiple biopsies  from different places but might miss a different part.

Once my wife's was removed, the reports were done and it was considered low grade. Some residual tumor has came back in two places and another surgery was recommened. We went to Mayo for another look. They found one small area that is high grade.

They said this is typical with this type of cancer. So you could have a biopsy done and it might not cover all the areas.

We were not given this option. Sorry I can't be more helpful.

If you don't mind me asking, how did you discover the tumor?????

Bless You, and we wish you the best.

Tim

RE: Retroperitoneal Liposarcoma

by nocancer on Fri Aug 20, 2010 05:47 PM

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Dear Joanie,

Last May I had a reperitoneal tumor remove from my abdominals and right ingunal area. Now I am having lots of pain in my abdominals more like bee stings or ants bites. it gets worse if I compresse or stretch my abs. I would like to talk to you if possible. Please email me at mcid@tx.rr.com. Thank you and I wish the best for you and yours.

Mary

RE: Retroperitoneal Liposarcoma

by Shawshill on Thu Aug 26, 2010 03:08 AM

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Ironman,

For some reason I can not send a private message, if you can send me your number again I will give you a call.

Tim

RE: Retroperitoneal Liposarcoma

by SarcomaJourney on Thu Oct 14, 2010 03:03 PM

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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.

Retired 2008 - My husband also did the clinical trial with Nelfinavir in 2006/2007 (6 months on the trial) when it first started at the City of Hope.  We live in Chicago.  It didn't do anything for his tumor, but interestingly you note your wife's tumor became necrotic and accredited the treatments in China, my husband's tumor became 95% necrotic by March 2007 - 1 month after getting out of the Nelfinivar trial.  We often wondered if that had anything to do with it and mentioned it to Dr. Chow, never heard about whether other patients had the same thing happen.  In my husband's case it was bad as the tumor at 8 lbs, got abcessed as well and broke through the wall of his stomach.  He was vomiting blood.  We went to MDA where he had his first surgery in 2000 (should have gone back immediately with this recurrence but on recommendation from MDA were following with a doctor at U of Chicago who let it get out of hand) and he had life saving surgery - another month and he would have died from the infection.  He lost half his stomach, 40% of his small bowel, his spleen, left kidney and adrenal gland, 1/2 his pancreas and had to have the esophagus reattached to his stomach.  Hard, hard recover, in the hospital for 10 weeks on TPN for 6 months, his small bowels just wouldn't get back to work.  You noted your wife was having a fever - maybe abscessed too.  Yur post on CancerCompass was April this year so I'm late.  By the way my husband had another small tumor removed in March 2008 and was clear till July 2010 now he has a very aggressive tumor growing between and around his IVC and right and only remaining kidney.  No surgery is offered at MDA or any place else we checked.  It grew from 2.5 cm in July to 7 cm Sept. 8th.  He is in the midst of his first cycle of Gemzar/Taxotere but as the oncologist noted only a 15-20% chance of shrinkage.  It has been 11 years since he was diagnosed in Aug. 1999.

RE: Retroperitoneal Liposarcoma

by SarcomaJourney on Thu Oct 14, 2010 03:09 PM

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On Aug 13, 2010 2:19 AM Shawshill wrote:

Met with Radiation Oncologist today at Mayo Clinic. I think the have a very well thought plan.

They will do low dose radiation (25 treatments), wait 3 weeks then preform surgery to remove the residual tumor, preform radiation during surgery, then decide if they will follow up with Chemo.

I don't know alot about radiation, but she went through simulation today. They did position CT scans, they are custom building a computer program for her body. She will have to lay in exact positions everytime. They will do Port Films every treatment and claim they can get her body to with-in a millimeter each time. They even had to record her breathing so the program can adjust.

They put her on the waiting list at the hope lodge, after the first week they think she will be able to get a room. We thought it was a nice place.

Meet with surgery next week.

Tim

Tim, wondering how the radiation went at Mayo.  Actually all literature on retroperitoneal liposarcoma does not point to radiation as anything more than palliative.  Most chemo is not effective - will shrink sometimes, will stabilize sometimes but never ever cures.  My husband is an 11 year survivor and gets his treatments at MDA.  He had radiation and chemo with surgery in 1999-2000 didn't do anything to his tumor which was well differentiated at the time but the radiation scarring internally made his surgery extremely difficult - he had lots of scarring.  And radiation is the gift that keeps on giving, years after treatment.  My husband has an inoperable recfurrent tumor now that is aggressive and showed up in July 2010.  Only hope is a 15-20 chance of shrinkage with chemo - Gemzar/Taxotere.  He has only one kidney and the tumor is around it so a lot of chemo is off the table due to the toxicity for kidneys.  Good luck with the treatment Hope all goes well.  Mapping for radiation is the standard by the way.

RE: Retroperitoneal Liposarcoma

by SarcomaJourney on Thu Oct 14, 2010 03:14 PM

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On Aug 15, 2010 4:43 AM ironman008 wrote:

I was diagonosed with a 10cm retroperitoneal tumor 2 weeks ago. I have been to Memorial Sloan Kettering, City of Hope, UCLA and on my way to MD Anderson for evaluation and treatment consultation. 

Can anyone comment on the risks involved with a CT guided core biopsy?  Many who posted on this bulletin appear to have had this done or your loved one had the procedure done to get a preliminary read on the tumor type and grade.

2 of the 3 centers want to do pre-operative radiation for 6 to 8 weeks around the tumor margin and where there is no margin prior to surgery.  The other center can go with or without radiation prior to surgery.

Any comments are welcome.  I am as devasted as each of you posting on this bulletin board.  I am in my mid-40's and consider myself in excellent health.

God bless.

I'm willing to bet that MD Anderson does not recomment radiation.  If the tumor is thought to be well differentiated the literature on retroperitoneal liposarcoma well differentiated and de-diffentiated does not show a benefit for radiation.  My husband is treated at MDA, they do radiation on limb sarcomas but only in special circumstances in the retroperitoneum.  My husband did have radiation in 1999 on a well differentiated 6 lb. tumor - did nothing but caused a lot of internal scarring that made his subsequent surgery very difficult.  He had a recurrence within 3 years.  Right now he has his 4th recurrent -inoperable and trying chemo - Gemzar Taxotere with only a 15-20 chance of shrinkage but no other options it is around his IVC and only remaining kidney.  On this last tumor he had a MRI guided biopsy at MDA, I know many folks have had the CT guided type without problems.  My husband's tumor as of 9/8/10 was 7 cm.

RE: Retroperitoneal Liposarcoma

by Shawshill on Sun Oct 24, 2010 02:18 AM

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Sarcoma Journey,

The radation went fine, a little tired but no side effects. They did not expect the radation to shrink the tumor, there goal is all about clear margins. Plus since it is a fatty tumor it is hard to tell where the tumor starts and stops. They say the radation will help the surgeon tell where the tumors edges are. She will have surgery for a senconf resection the 26th. The doctors say if the surgery is preformed with in 6 weeks of the radation there should be no issues.

They will aslo due radation at the end of the surgery tto help mop up any chances of microscopic cells left behind.

I must note part of my wifes is high grade tumor.

She has also lost (1) kidney.

RE: Retroperitoneal Liposarcoma

by Shawshill on Wed Oct 27, 2010 09:54 PM

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Had surgery yesterday, recovering at Mayo, surgery lasted 7.5hours. Everything went great (3) areas of tumor were removed, we think these are all parts left from the original tumor.

They had take a god portion of the left psoas musle, the main nerve was not involved so she seems to have full use of her left leg. She has been up walking twice today.

They preformed radation during surgery to the area the tumor was located. They had too remove a small portion of the diaphragm during surgery, but took care of this before they closed.

Should be able to come home this weekend, will have follow up scan in December.

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