Well differentiated liposarcoma...

swcoody
swcoody Member Posts: 3
in Sarcoma #1

In February of 2014 I noticed a small lump in the front left thigh right above the knee. It was about the size of a quarter and felt somewhat like part of the muscle. It was fairly hard and did not move. I ignored it thinking it was due to my new workout schedule. In July of 2014 I went on a 8 hour road trip with my husband. By the end of the trip my left leg was aching all the way from the hip down to my toes and it felt very restless. When we reached our destination, I was rubbing on my leg because of the acheing and was shocked when my hand went over the spot where the quarter sized lump was. It was now about the size of dinner roll! It was still hard and not mobile. My leg continued to be very achey and restless for the next week or so. I went to the doctor in mid july and he did an xray and mri. After the results came back, they called and said they saw NOTHING there! But i could still feel it and see it! So they sent my to an orthopedic dr. He reviewed the mri and said he did see an enlarged area of tissue but didn't know what it was. By the time I went to this appt, the mass had grown to be about the size of an idaho potato.. He said he thinks it is just something like a lipoma but since it is growing he referred me to a specialist at a sarcoma center. My leg continues to be achey and restless at random times and especially at night. Does anyone have a similar story to mine that can offer some insight? From all the research I have done, I am thinking this could be a well differentiated liposarcoma but thats obviously just a guess.. My appt with the specialist in dallas isn't for a couple weeks.. Is there any questions I need to make sure he answers or things I should make sure he addresses? I have a fear of getting there and having a dr that blows it off and doesn't investigate further. Thanks for any advice or opinions!

 

Sarah

Comments

  • mumsmiracle
    mumsmiracle Member Posts: 3
    #2
    Sarcoma

    Hi Sarah, 

    In responding to your concern about what you are seeing and feeling, just the fact that you are experiencing pain, that there is a mass, that it is solid and is growing is enough and warrants immediate attention.  I am a parent who has been through a diagnosis of neurofibrosarcoma with my daughter.  These symptoms you have described and the fact that your doctor has referred you to a sarcoma clinic is a good step.  Be rest assured this clinic specializing in sarcoma's will no doubt take all precautions in a diagnosis.  You will probably have a series of tests done first, and being it a sarcoma clinic they will have a good indication just by they're findings in looking at it.  I'm sure you will have to have a CT and/or MRI.  This is a sarcoma clinic so I wouldn't fear that they will take this lightly.  They will take care of you.  I will keep you in my thoughts and in my prayers.  If you would like to read about a Long Term Survivor (my daughter), it's under "Neurofibrosarcoma Long Term Survivor."  Have Hope and Faith.

      Mumsmiracle!

     

  • bmscan
    bmscan Member Posts: 37
    #3
    How Did It Go?

    I replied to your discussion earlier, but it doesn't look as if it registered.

    I have a some of my expereince noted (in a bit lenghty blog), which covers sort of what you are looking for.  It can be found when you search for Liposarcoma: 10 Years, 7 Tumors, And New Technology… Beating the Odds!

    Hope you don't even have to look further, but if so it is here to help.

    Brian

  • tlkp
    tlkp Member Posts: 3
    #4
    Liposarcoma

    Sarah:

     

    My experience was in many ways similar to yours. I had noticed a lump in my thigh, but I figured it was nothing to worry about. It could have been from increased exercise, or it could have been a lipoma (I'd had two previously). The reason I saw my doctor is I noticed significant weakness in my leg. Thinking I had peripheral artery disease, my doctor sent me for an MRI. The MRI clearly showed a large mass, and I was referred to an oncologist. Multiple CT and MRI scans combined with a biopsy provided a clear view of the mass and its location (abutting the femoral artery and vein) but didn't show whether or not it was malignant. My liposarcoma diagnosis wasn't confirmed until the tumor was removed and sent for examination.

    I admit I got a bit frustrated during the process because once the mass was found, I wanted it out. I also had a job that required me to be abroad for 3-4 months at a time, and I didn't want to have to quit my job because I couldn't get a surgery date. In hindsight, I understand what was happening. First, sarcomas are rare cancers; that means that liposarcomas are very rare. Therefore, few doctors have much experience with them. As a result, I was sent to a total of three specialists to develop a treatment plan. Second, my tumor was large and abutted both the femoral artery and femoral vein. The delay scheduling my surgery was because my doctors were taking the time to consult with a multidisciplinary team to figure out the treatment approach that would be least likely to result in amputation of my leg. (Outcome: The tumor was mostly encapsulated and therefore didn't actually touch the femoral artery or vein. Because of this, no dangerous grafts were needed, and I'm in no danger of amputation. I did, however, have to quit my job so I could be in the US for my surgery.)

    I share this with you to help you understand some of the things you may face. It may not be possible to know if you have a lipoma, a liposarcoma, or something else entirely until the mass is removed and studied by a pathologist. Don't hold this against your doctor(s). Liposarcoma isn't terribly common, so your doctor may want to consult with one or more other specialists. That means your doctor is trying to give you the best possible care.

    More advice: I recommend that you spend some time in the library (online and/or brick and mortar) researching cancer in general and liposarcoma in particular. You may need to ask a librarian for assistance finding appropriate materials. (Cancer.org is a great place to start, but medical journal articles can also be helpful.) Remember, knowledge is power. I found it very comforting to go to appointments armed with information and to hear my doctors planning the exact steps that published research articles recommended. Also, surgery can easily cause problems with sensation (damaged nerves) and/or lymphedema (damaged lymph vessels leading to swelling and, possibly, fibrotic tissue). Again. knowledge is power. Learn about these conditions and ask your doctor any questions that seem pertinent to your case. Radiation therapy and/or chemotherapy might be recommended in addition to surgery. Learn everything you can about whatever treatment is suggested so you can make the best decision possible. Doctors don't always discuss long-term effects and possible complications unless they're asked directly.

     

    Teri

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