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liposarcoma age 40 in right groin

Posts: 3
Joined: Oct 2009

Hi, I was just diagnosed 3days ago. I had surgery on oct.6 when they removed a lump.my local hospital thought it may be a spindle cell fibrous tumor. but, when they removed it a specialist could not identify it. then it was sent to university of wisconsin and now i am told it was a malignant tumor and i have low grade Liposarcoma. the local hospital saw benign cells where as uw saw malignant ones. i have already seen the onocologist and they are discussing my case this thursday with the board of drs. I am scared to death. What i read so far is confusing.my tumor was 4x4x2mm 2 and1/2 inches i think.they said they saw several diff. cells and my appt. is monday. the dr. said thy have to get results of the perimeter around the tumor ,how many round cells and what % is malignant if over 5%.
Do u think they r just tyelling me its low grade based off the first hospitals evaluation? and obvious there is spindle cells seen else they wouldnt of told me the first time and i have read about spindle cell liposarcoma but my onocologist hasnt even mentioned spindle to me? the tumor was all removed and it was incapsulated but attached to my muscle, so they had to cut the muscle. Does anyone have any answers for me possible treatment i will need or none? Im trying to ease a little worry before mon. also it seems like all liposarcomas come back? thanks and god bless all of you too! Kelly

Posts: 13
Joined: Apr 2009

Hello Kelly. My husband was diagnosed 2 yrs ago with retroperitoneal liposarcoma (behind the abdominal area) His first surgery involved removing one kidney because the tumor had attached itself to it and was quite big. We were referred to Sloan Kettering in NY due to the fact that this type of cancer is more rare than others and they have specialists there. Our surgeon at Sloan told us that all of the cancerous tissue was not removed at the first surgery . So, for the last 2 yrs, my husband has been going for CT scans to watch this thing and after going yesterday we have found out that it started to grow 1 cm. Now the doctor says is the time to go back in and try to get the rest of it out. He goes on Nov. 16th. Yes, we were told that sarcomas continue to recur. Especially this one. The avg. time is 2-3 yrs. and each time it comes back surgery must be performed again. Chemo doesn't work and radiation will due damage to vital organs at the site so that is out as well. All info I have gathered says that surgery with total resection is the best answer. We are 47 yrs old with two children, 15 and 12. Of course, not only do I worry for my husband every day, but also for my children. It has been a very difficult road, some days better than others, but now quite difficult again, knowing that this leftover patch has started to move.
I am always on the internet searching for as much info about this as I can (although my friends tell me not to) and granted, much of it is not optimistic. But I often feel very lost even after seeing the doctor when I try to understand this.
What state do you live in and did you have your surgery at a local hospital?
Hope to hear from you, Sue

Posts: 1
Joined: Sep 2015

Hi I am just 40 and my story matches your husband. i just found out this past January 2015 and had surgery feB removed my 15 lbs tumor kidney and spleen. How are things? This is my first time reaching out but I hate having scans all the time and they make me Really sick so I am thinking about going annually now. Thanks for any advise. Is he on any kind of special diet!


Posts: 1
Joined: Nov 2009

I had a well defined lypo sarcoma tumor removed from my left inner thigh exactly 20 years ago on Nov 6 1989 ..I was 40 at the time..The plan was to radiate the tumor first.. 30 treatments and then operate which they did The tumor was incapsulated so they removed the complete inner thigh muscle...it did not effect me physically except i was told no more ice hockey or skiing or horseback riding ... There was no chemo done and i still go for check ups every year and everything is fine...

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