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Retroperitoneal Liposarcoma survivor stories needed to encourage me

Ripleyshipley
Posts: 1
Joined: May 2017

Hi. I'm 5 months post surgery after having had a 5lb Liposarcoma removed from my abdomen. I was fortunate that I did not lose any organs during surgery and was deemed to have had a 'surgeons dream' of an operation due to the unusual lack of complexity. No treatment afterwards, follow up surveillance once a year. I should be delighted but deep down, I'm still as scared as hell. All I can find is stories of recurrence and multi operations getting more complex with time. Am I living in cloud cuckoo land to consider that there is a 50% chance this year it won't grow back and increasing year on year. Or were they just gentle stats to help keep me calm. 

People do survive this, so where are you all? 

Gill. NZ

Jttx817
Posts: 1
Joined: Oct 2017

i had my first diag and surgery in July this year.  Clean and simple, just lost spleen.  3 month follow up , have been strongly suggested to get to a Sarcoma expert -there are a few areond the country.  Just got my 3 month CT scan and am going to MD Anderson for second opinion l. As they found suspicious images which I'm having a petscan tomorrow to confirm yes or no.  They call this a beast for a reason. Join the Facebook lipoma survivors, lots of information there.

Sorry to scare you but you really need scans every 3 months, not once a year!

 

 

 

cathybuch
Posts: 1
Joined: Oct 2017

I too had my beast removed March 3, 2017, 15 to 20 lbs 10 x 14 inches.  It was encapsulated so no other organ involvement but did not get clear margins.  Scan every 3 to 4 months for me....wait and see.  

zgreatwhite
Posts: 2
Joined: Mar 2018

Hello,

My wife will be having surgery shortly.  Her beast size is close to yours.   Curious what you meant by not getting clear margins?   Does that mean when they examined the tumor they did not see "clear" tissue near the cuts?

 

I am also curious where you are.   We are just north of Disneyland in Southern California.

 

God Bless.

zgreatwhite
Posts: 2
Joined: Mar 2018

My wife will be undergoing surgery shortly.   12 in x 12 in x 6 in.   She is 58.   Otherwise very energetic and in wonderful health.

Extremely scared due to the size.   CT Scan seems to indicate the tumor is self contained.  But I haven't seen much discussion on CT Scan results versus surgery.  Needless to say her tumor is touching many organs.  All blood work is normal.

I suppose we are fortunate living in SoCal there is a choice of two medical centers.  We have no idea which one will provide her that best chance of survival.  

I pray for everyone here.  

nintindo
Posts: 1
Joined: Mar 2019

I hope your wife is doing better after her surgery and treatment. My sister just got diagnosed with retroperitoneal liposarcoma, dedifferentiated high grade type. Very aggressive. She had it removed by GYN oncologist as she had large fibroids too. They thought the retroperitoneal mass was part of the fibroids. Little did they know it's cancer. She is awating chemo, but has Kaiser, which is not the best with rare cancers, sadly. Hoping to find better result with UCLA or the Sarcoma Oncology clinic in Santa Monica. Anyone have experience with the Santa Monica clinic?

kw4646wk
Posts: 3
Joined: Apr 2019

Just turned 66yo in March.

First diagnosed in1999 at Huntsman Cancer in Utah removed a 32 pound tumor. 

It returned in 2002 and removed a lot smaller tumor. Huntsman

Got a second opion at M.D. Anderson (2006)

Again in 2006 with pre radation treatments with major surgery removing organs and post surgery major compilations. Huntsman

2009 removed a lot smaller tumor. Huntsman

2013 removed a medium sized tumor. Huntsman

2018 Large tumor and spread to thigh. Started Ibreance in Sept 18 and still taking April 2019. 2 scans so far and the tumor has stayed about the same size.

Summary 19 years so far with this cancer as long as the Ibrance keeps the tumor about the same will be great news. 

I hope this informaton will heip someone.

 

 

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