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Liposarcoma on the left thigh

Yiannis
Posts: 1
Joined: Feb 2005

I was diagnosed with liposarcoma on the left thigh when I was 30 years old(1992). My tumor was due to my negligence at the time, left to grow to massive proportions(17cmX12cmX5cm). It was surgically removed at the time by wide local excision and followed by 3 rounds of local chemo and 1 round of general chemo. I remained tumor free up to 1 month ago when I felt again something growing in exactly the same area of the previous wide excision. Subsequent ct and Mri showed that I had no metastases but surgical removal by wide excision again showed the same myxoid type2 liposarcoma(2.5cmX1.8cmX1cm)as 13 years ago. My doctors are confused on how to proceed with this. Their opinion varies to whether this should be treated as a new tumor or as a recurrence after 13 years. Treating this as a new tumor means no subsequent treatment since all margins of the wide excision are around 2cm and considered safe. treating this as a recurrent tumor means that radiation is needed but with all I hear about the side effects I am cautious to proceed. My new incision is about 30cm long and apparently I will have to be exposed to a lot of radiation. Any experiences with post op radiation will be greatly appreciated. Also any references please where I could get some definite answers would also be greatly welcome. Stay clean and be strong Best regards

MAX63
Posts: 1
Joined: Feb 2012

Last summer I was in the shower and noticed a large bump on my left thigh which almost seemed like I had an extra muscle. I could not sleep on it a and my gait started to change which caused knee and foot pain. My doctor sent me for an ultrasound but I was only diagnosed as having a mass in one of my quad muscles. He then sent me for an MRI and in February 2012 I was diagnosed with having a Lipo-sarcoma tumor measuring 9" x 4" x 2" in my vastus lateralis muscle. I was immediately sent to an orthopedic surgeon/oncologist. He prescribed pre-op Physiotherapy to strengthen my muscle because I had developed atrophy of the muscle (shrinking of the muscle). Then I had surgery in May 2012. The surgery went well and I was sent home to recover the same day. The recovery was painful but not unbearable. The painkillers keep you sedated and help you sleep but any movement will be felt. I was able to move around with crutches and I was able to go up and down the stairs with the use of crutches after 3 days. I had a follow-up appointment with the surgeon 10 days later and he told me that the tumor was removed entirely and no further treatment is necessary. I've resumed physio-therapy and I'm improving quite rapidly. My mobility is almost 100% however my left leg is still very weak and I need to be careful when I walk because my knee could give out at any moment due to the weakened muscles. I still use a cane when I go out and will be on my feet for an extended amount of time. My left thigh is slightly smaller than the right one but my physiotherapist says that it will eventually go back to normal within a year. I do have images from my MRI I could send you. I got really scared and discouraged when I first saw them but this whole ordeal really hasn't been as bad as I expected and I'm delighted that chemo or radiation isn't necessary.

MKPLUS6
Posts: 1
Joined: Jul 2012

Hello, I was researching a problem I'm currently having and it brought your post up. After me searching the internet and doing a lot of reading your post finally sounded familiar to mine (the first line of your post). The reason I'm researching is because I'm currently without health insurance and it could be up to 2 more months before I get it. Anyway, I was wondering if you could tell me more about what yours felt like and what it looked like when you first discovered it? I too noticed a large bump on my left thigh (outer thigh). And just like you said it almost seems like it's an extra muscle. Mine does not hurt at this point in time. It has however got quite a bit larger since I discovered it a little over a month ago. It is now approx 5cm in diameter. Whenever I'm standing I can barely feel it and it can barely be seen but if I'm sitting, legs are bent, or especially when my legs are crossed it can be felt from every direction. You can also see it as it is very noticeable in these positions. It is not a perfect round spot but rather the skin looks swollen up around the entire thing. I wasn't too worried until my husband and I felt it the other day and it has gotten noticeably bigger in just a months time. Can you tell me what you felt & saw before you knew what it was? Thank you

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Don't research any further, go get it seen! Sarcoma is nothing to wait, on, neither is a lump on your thigh. My Mom ignored hers and we just found out about it. Her heart got her to the ER, now her thigh is secondary, and they are talking cutting her leg off.......

Get it seen! Hope it's nothing........

Bldalton
Posts: 3
Joined: Dec 2012

I am hoping that someone out there can help me. In 2010 I noticed a large swelling on my left thigh. I had been walking over 4 miles a day at a pretty good clip so I thought I had a swollen muscle. So by the end of 2010 I decided I had better have it looked at. I had an MRI and the radiologist said it was a lipoma. So I had surgery on December 22 2010 to remove the "lipoma" by a general surgeon. He told me the tumor was over 22 cm and deepp since he had to cut muscle to free the tumor. When I went back to the surgeon in Jan. 2011 he told me it was cancer and that he was setting me up with an Oncologist and a Onocology Surgeon since the margins were positive. I went to Indiana University in Indianapolis and the surgeon told me it was low grade but he was concerned by its size. He did a local wide excision (shaving muscles). He recommended radiation to ensure no further cells remained (insurance). I had 6,000 Rads of radiation. I was burnt to a crisp and it damaged my lymph nodes. Now I have Lymphodemia in my leg. I finished radiaion in May 2011. When I went for a followup CAT scan at IU in August 2011 and I had an 8 cm tumor close to my hip. In September 2011 he went in and "got all tumor he could see". He had to remove my Rectus Femoris and Satorius muscles. When the pathology came back I had positive margins deep (and quite a lot) and close margins superficially and laterally. He wanted me to have additional radiation and my Radiation Oncologist said no. So since I have had 2 MRIs with contrast and other than scar tissue and fluid nothing has been detected. I am nervous about these positive margins. Now my Oncologist Surgeon is on Indefinite Leave of Abscence. I really don't know where to turn. I am so nervous having this stuff in my leg. Can anyone out there provide me some guidance????

apage4alex
Posts: 6
Joined: Oct 2013

mine was in left buttocks with no pain my wife noticed it i let months go by before seeing a dr my storys on this page i have maine care my operation and treatment was free as i volunteered for a new chemo treatment i had it removed and was cancer free for over 17 years then it kept returning in the same leg I do encourage you to get treatment now as it only gets bigger

I go to mass general in boston i still have my leg and can walk but have swelling and numbness 

 

hope all goes well for you and your family

JeanDane
Posts: 2
Joined: May 2013

2 years ago, I got this. I let it go 2 1/2 years before diagnosed. Had outpatient surgery.

I had no post surgery meds., no chemo, no radiation.  It was a long tumor

(maybe 5 inches). (Tumor became infected + bled before the surgery.)

Since surgery I have a little spotty leg numbness and a little "hand stupidity."

I work, drive and do everything as if I never had this thing.

I am 58 yrs. female.  Today, I still am taking no meds of any kind.

I am doing great.

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