Retroperitoneal Liposarcoma

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RE: Retroperitoneal Liposarcoma

by christabell on Fri May 25, 2018 01:04 AM

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On Mar 16, 2017 12:25 PM splamkin wrote:

Hello If you're newly diagnosed with liposarvoma the best thing you can do for yourself is get to a major metropolitan hospital that specializes in this type of cancer. There are new protocols in addressing this type of cancer. My husband was treated at MGH in Boston and is going on 5 years cancer free. Susan
Hi Susan, I'm originally from Boston however now I'm San Diego. I was diagnosed in 2013 dediff LS, removal 15 cm tumor. I too have been NED until 3 wks ago found 4 cm tumor which hopefully respectable near left kidney cap. I'm interested you mention new protocols at MGH , can you share what new protocols your husband received? Has your husband had proton beam in conjunction with surgery ? My scheduled surgery date is June 8 being optimistic I'm very happy with my team of doctors never had chemo or radiation just surgery. Hoping your husband is doing well , it's been a year since your last post ? Christine

RE: Retroperitoneal Liposarcoma

by splamkin on Fri May 25, 2018 12:00 PM

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Hi Christine, sorry to hear about your liposarcoma. Unfortunately, simple surgery is NOT the answer! Without proton radiation your cancer will continue to recur. Being in San Diego there must be a sarcoma unit with proton radiation. Sarcomas are dangerous in that they tend to recur without this specialized radiation. My husband is now cancer free five years. His surgeon and oncologist could not stress enough just how important this step is. Please get another opinion from surgeons that specialize in these exceedingly rare cancers. He had a kidney removed as well as some intestine etc. Please for your sake seek out another opinion by a sarcoma specialist, please.

RE: Retroperitoneal Liposarcoma

by howell58 on Fri May 25, 2018 02:09 PM

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Christa---

Radiation is dangerous and has alot of risks due to location in retroperitonium. My husband just went through surgery for bowel obstruction caused by dediff tumor. Prior to surgery had five days of radiation due to the location of the tumor and the blockage, needed immediate relief as surgery to the tumor at this time was also too risky.

Everything depends on the individual and the type of sarcoma.  They are not all the same and respond differently.  My husband has recently had chemotherpy treatments which stabilized the growth of the tumor, while others were not so lucky

If the makeup of the tumor has the tendency to recur, it will recur at some point regardless of your treatment.  Thats just what this cancer does.

He has been fighting this disease for ten years now.  Patient at Sloan Kettering in NY with sarcoma specialists.

Best regards,

Sue

RE: Retroperitoneal Liposarcoma

by splamkin on Fri May 25, 2018 02:45 PM

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My husband’s 17 lb tumor was located in the retroperitoneum. There is radiation and there is proton radiation. There is a major difference between the two. Proton causes much less damage to the surrounding tissues. This was successful for my husband.
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