Retroperitoneal Liposarcoma

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RE: Retroperitoneal Liposarcoma

by howell58 on Thu Feb 02, 2012 02:31 PM

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Hi faranak.....I just read your posting.  My husband was diagnosed with this same type of cancer 4 1/2 yrs ago. They did not get clear margins with the first surgery, so the second surgery was performed 2 yrs later.  He has also had 2 metasis to his lungs.  Thank God he has been cancer free now for 18 months.  We were sent to Memorial Sloan Kettering in New York (we live in Jersey) as they are one hospital which deals with this type of cancer on a regular basis.  We were told that chemo does not help this type of cancer, as it is immune to it.  Until surgery is no longer an option, it is the best management even with recurrence. I don't know where you live, but you may be able to call Memorial Sloan Kettering or go on their website for further information.  God Bless.  Sue

RE: Retroperitoneal Liposarcoma

by Shawshill on Thu Feb 02, 2012 10:46 PM

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Make sure you go to a hospital that has treated this, my wife had her first sugery 25 mo's ago, it came right back. We switched to the Mayo Clinic, she did radation (to help with Margins), then another sugery with radation during surgery, and then she had Chemo for a follow up after she had recovered from the surgery.

Her scans look great, she has been cancer free for over a year now.

 

Tim

RE: Retroperitoneal Liposarcoma

by jim1234 on Sun Feb 19, 2012 03:36 AM

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I have been fighting dedifferentiated retroperitoneal liposarcoma for four and a half years now.  The initial surgery removed an 18 cm tumor and a number of organs and parts of organs.  I have since had two re-occurances. 

I recently started doing "Tong Ren" energy healing and it had greatly improved my energy, digestion and outlook.  It is to soon to know if it will help with the cancer but if nothing else I feel much better.  I would reccomend people look into it.  I do group sessions for $10 per session as they are availabe in my area.  I also participate in conference calls and internet sessions at no cost.  They say distance does not matter and that it is as effective over the phone as in person.  They don't need to touch you or even meet you in person.

The following web pages provide more information and there are at least a dozen well written books on it.

Fox News Special (2 minutes) on Tong Ren Energy Healing:

http://www.tomtam.com/ posts/fox25-boston-news-special/" target="_blank" rel="nofollow">http://www.tomtam.com/ posts/fox25-boston-news-special/

NBC News Boston Special (2 minutes) on Tong Ren Energy Healing:

http://www.tomtam.com/ posts/nbc7-boston-news-story/" target="_blank" rel="nofollow">http://www.tomtam.com/ posts/nbc7-boston-news-story/

Tong Ren Station web pages:

http://www.tongrenstation.com/

http://www.tongrenstation.com/ what-tong-ren

This web page is for the guy who figured it out and developed the “Tong  Ren” healing system. http://www.tomtam.com/

Live in person sessions, listed by State

http://www.tongrenstation.com/ tong-ren-class-directory

Live online sessions:

http://www.tongrenstation.com/ tong-ren-live-broadcast-schedule

Live Conference Call sessions:

http://www.tomtam.com/ tong-ren-conference-call/

 

 

 

 

RE: Retroperitoneal Liposarcoma

by Sarai on Sat Mar 10, 2012 01:44 AM

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Well, five years later. I wonder how your mom is. I recently had a retroperitoneal Liposarcoma and I'm having a hard time finding folks with positive outcomes...My tumor was 24 pounds. I under went 7 weeks of radiation (IMRT) and had it surgically removed along with my R kidney, overies, accending colon and a gastrojejunostomy. I was treated at the Mass. General Hospital. That was all five months ago. I have started running again, I work full time and I feel great. Sometimes I even forget I endured cancer. I am a success story and I do hope you heard several others to help you and your mom see the light at the end of the tunnel.

RE: Retroperitoneal Liposarcoma

by howell58 on Sat Mar 10, 2012 02:24 AM

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Happy to hear someone has recovered from their surgery. My husband has had a total of 4 surgeries. He has been clean for the past 18 months, feeling awesome, but recent scan shows a spot.  Extremely small and docs are really unsure of what it is, but it is in area where original tumor began so looks to us like its a recurrence.  He will be scanned again in 4 months and the docs will compare and see if it has moved or grown.  REtroperitoneal liposarcoma has a high recurrence rate.  60 percent or higher.  My husband is 49 now, and we have endured this for almost 5 yrs.  We hope and pray it can stay away as long as possible.

RE: Retroperitoneal Liposarcoma

by Shawshill on Sat Mar 10, 2012 02:45 PM

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My wife has been clear for 17mo's!!!!  She has pain and nerve damage from her second surgery since they had to remove some musle along her spine and preformed radiation during surgery.

We are just happy she is doing so well, we will head back to the Mayo Clinic in 10 days for blood work, chest x-ray, and another CT Scan.

They have been preforming scans every 4 to 5 momth.

Tim

 

 

RE: Retroperitoneal Liposarcoma

by Karen92 on Sun Mar 11, 2012 06:12 PM

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Hi, I'm new here. Congratulations on your 5 years. Have been reading through some of the recent messages and am feeling a little more reassured about things in general.

     Last April I was diognosed with retroperitoneal liposarcoma. My surgeon is at the Hospital of the University of Pennsylvania and is great. The tumor he removed in June weighed 35 pounds. Surgery was 8 or 9 hours during which I also had a bowel resection, a left ureter resection, and a left ventral hernia repaired. Spent a week in hospital, followed by 5 weeks in rehab. My September CT scan showed nothing, but the January scan showed a softball size mass. By the time it was removed 2 weeks after the scan, it was melon sized. I feel good at present, walk a quarter mile every day. My surgeon referred me to an oncologist who specializes in soft tissue sarcoma. He wants me to have a radiology consult (although he suspects radiation is probably a non-starter) and a new baseline CT. His visit notes indicate that I am at high risk for recurrence (who isn't, I suppose). He told me that should it recur, there are some meds that have been successful; and surgery is always an option. The surgeon says I withstand surgery well, but 2 surgeries in 9 months (plus unrelated kidney surgery in November) is a lot, and he's hoping I won't need his services for a good while.

     Thankfully, I've had absolutely no pain following either surgery, other than having a indwelling Foley catheter for three hellish weeks. While I've had a really good attitude throughout, it's all beginning to wear on me. Making all the appointments is a little overwhelming, and the only reliable person to help is my ex-husband who has stood by me since I was diagnosed. He has his own health issues and he's a worrier, so I try not to make too much of my fears. I suppose I'd just like to talk about how I'm feeling from time to time, if that's OK. I don't mind admitting that I'm scared. I'm only 59 and there are still a lot of things I want to do with my life, but the creative part of my brain shuts down when I'm stressed. 

Karen92

RE: Retroperitoneal Liposarcoma

by howell58 on Sun Mar 11, 2012 07:43 PM

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Karen......

My husband is treated at Memorial Sloan Kettering in NY.  His surgeon specializes in this type of cancer. (although I second guess him as well due to my fears I guess).   People have told me not to go on the internet but I always do, and while much that I read is terrifying, I feel that I am well informed when I speak and listen to the doctor, etc.  Recurence is always high, and you are exactly right, how many surgeries can the body take?.  So far my husband has had within a 3 1/2 yr period.  While I am scared every day, we have 2 children in high school, I try very hard to enjoy every minute of every day and be thankful for all the days we have had.  A friend of mine told me that every day you wake up with cancer is a blessing and I believe that to be true.  I have heard bad stories, yet stories of great success with this type of cancer and believe it is kind of luck of the draw.  I hope and pray you continue to feel well, people have told me my husband's positive attitude has to mean more to his well being that anything else.

Sue

RE: Retroperitoneal Liposarcoma

by Karen92 on Sun Mar 11, 2012 09:10 PM

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Thanks so much for your encouraging message, Sue. My best wishes for your husband and for you and your children. One of the reasons I get scared is because my sister died 10 1/2 years ago of breast cancer. I know that that was then and this is now, and a lot has changed since Diane died; but short of surgery, I think there's a lot of educated guesswork involved the treatment of retroperitoneal liposarcoma. I had found some articles on the net that were 10 years old, and the outcomes then weren't so good. Have you read anything more recent? I always read the pathology and surgical reports, as well as the doctor's notes when I can get them, and I have a medical background, so I understand a lot of the reports.

   As for the positive attitude, the first time around, I was convinced I'd be OK. Since the recurrence, my convictions have slipped slightly. Maybe after a couple of clear CT scans, I'll feel better about things. 

    Thanks again!

Karen

RE: Retroperitoneal Liposarcoma

by howell58 on Mon Mar 12, 2012 12:13 AM

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I have read many articles on the interest regarding this sarcoma.  Again, some not good, some where people have gone 7 and more years with it.  I have also read that if they obtain clear margins the first time around, your prognosis is much better.  Then there is the whole de-differentiated vs. well-differentiated type. One is more aggressive than the other.  My husband was clean for 18 months, but his latest scan shows a small spot.  Doctors cannot confirm that it is a recurrence, and we must wait until the next scan in 4 months.  Also, even it is confirmed, it is so so small that they wouldn't operate at this time.  The surgeon said the idea is to operate as few times as possible, since surgery is the best management at this point.  My hopes have diminished a bit since hearing this news, but we can only go one step at a time.  Each time you get a scan you hold your breath and pray.  Not easy at all but these are the cards we have been given as my husband would say. I look forward to keeping up with you, and sharing our information.

Sue

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