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Old 11-27-2012, 10:09 AM   #1
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rick7932 HB User
Liposarcoma diagnosis

I recently went in for what I thought was routine surgery to remove a large lipoma from my hip/buttock area. Based on the imaging and the rate of growth, docs thought it was a routine lipoma (benign). Pathology showed otherwise - it was deemed to be a well-differentiated liposarcoma. I am headed to a specialist in a couple of days to get an MRI of the area operated on, and a CT scan of my chest and abdomen.

Based on what I have discussed with the surgeon who did this surgery, and from what I have read, this type seems to respond readily to treatment. My concern is the length of time the tumor was there (we only recently found it) - looking at previous imaging for unrelated treatment we can see the mass was there in 2008. My biggest concerns are did they get it all, and in that time could it have spread. Hopefully the CT scan will reveal that is not the case.

The 'good' news is that it only grew 2cm in that time, which is why everyone thought it was a routine fatty benign tumor. I never felt any pain, and until it started growing outward it really was not that apparent.

I am looking to share experiences with persons undergoing treatment for similar, as well as persons who have been treated in the past for this, just to share notes on treatments, experiences, to help put my mind at ease. I have more questions than answer at this time.

Present doc stated that they may reopen the area and take more tissue to get wider margins to ensure it does not return. The CT is to ensure it has not spread to my chest. The 2008 CT was clear, save for the fact they overlooked the mass in my hip. I am wondering if the follow on treatment is radiation to that area (and what to look out for or know going into that), or would they do chemo? My thinking is chemo would be mainly if they cancer has spread to other parts - to try and kill the tumor.

What I am being told is that these tumors respond well to standard treatments, and the slow growth means they typically do not spread.

 
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Old 11-27-2012, 08:08 PM   #2
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Re: Liposarcoma diagnosis

Hi there rick :-)

Glad to meet you, although I wish it wasn't under the circumstances.

I am a 16 year survivor of liposarcoma. The tumor was in my left thigh and I did lose a major muscle there as well as a large portion of the thigh. However, I was fortunate not to lose the leg and it functions today, although I do deal with some pain issues.

Like you, my surgeon thought it was only a fatty tumor. The biopsy actually had to be sent to the Army in Washington, DC for diagnosis as none of the 6 lab guys here had ever seen sarcoma and were not sure about it. Took 3 and a half weeks for diagnosis.

I ended up being treated at Mass General Hospital. An oncology surgeon as well as a plastic surgeon worked on me. Much, much wider margins were taken and ultimately muscle was cut from under my breast and stomach to flip down into the leg so it would heal. It was quite cutting edge at the time. There were only 2 sarcoma clinics in the world at that time... Mass General and MD Anderson down in Texas. There was only one small study that had been done in Europe concerning sarcoma at that time. In the ensuing 16 years many sarcoma centers have come to be and new and better treatments are constantly emerging.

I guess if I were to offer any advice, it would be that once the sarcoma diagnosis is made that the patient be treated at a Sarcoma Center by an oncology surgeon and team of other specialists who have worked with sarcoma ( radiologists, oncologists for chemo, etc).

The order of treatment for me was radiation, then the second surgery and then chemo. At that time, as there really was not much infor on sacomas, I was given chemo that was standard at the time for lung cancer. I am sure today that more refined and specialized chemo is used. The chemo for me was actually an adjunct treatment. Six rounds were proposed, but I stopped at four. I had other issues going on and I could not physically handle any more. Looks like four rounds did the trick as I am free of cancer sixteen years later. Not sure what the treatment would be for you in today's atmosphere.

Any questions I might be able to answer I would be honored to do so.

With all best wishes
reach

Last edited by Administrator; 11-30-2012 at 09:56 PM.

 
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