Possible liposarcoma of the arm and questions...

evsmom
evsmom Member Posts: 11
edited March 2014 in Sarcoma #1
I found a small lump on my left arm over a month ago. My doctor said it was simply a lipoma but if I wanted to have an u/s conducted she would order it. Long story short the u/s turned into an MRI which is turning into having the tumor removed for further dx.

The tumor showed characteristics of a lipoma as well as characteristics of a liposarcoma. I received the MRI report via email from my doctor and I'm very frustrated with that as I will have waited a total of 5 days to meet with her. I was given a report that was quite impossible to understand. She is referring me to a specialist (I'm assuming a sarcoma specialist). All research I have read emphasizes seeing an oncologist specializing in sarcomas due to the rarity of this cancer and the importance of being treated by someone who is familiar with it.

I have been encouraged by a family member who is a radiologist to have the entire tumor removed w/ surrounding tissue for biopsy, not just a needle biopsy.

What is involved in this? I have Kaiser insurance and so far feel the system is extrememly challenging to navigate. One cannot simply get on the website and find out which providers specialize in sarcoma. I have many, many questions and feel that I need to get a jump start on getting answers.

Comments

  • BigPapaBear73
    BigPapaBear73 Member Posts: 10
    #2
    I recently went through a
    I recently went through a resection of my neck, in the beggining of may a tumor was removed from my neck, i was told it was benign, but the doctor sent it to the pathologist anyway which turned out to be liposarcoma. I suggest maybe calling your insurance to see if they can help find a specialist, make sure it is an expert (oncologist) and get a second opinion.

    mine was rather small (1.5cm) but very angry as my oncologist put it, after the resection ( which was the removal of the tissue that surrounded the tumor and it depends on the tumor size)i was told that it is all out. Unfortunately/fortunately for me it was a noticeable bump on my neck which means it was not very deep but the resection included some of my skin so i had to get a skin graft. i hopethis helps a bit.
  • andreaann
    andreaann Member Posts: 1
    #3
    I recently went through the
    I recently went through the same thing, but the process was a bit different. I had previously been told that the lump on my arm was just a lipoma and nothing to worry about. I went to a different doctor after several years because it had gotten much larger and started to have a strange shape to it. That doctor told me it was a lipoma as well, but referred me to a dermatologist to have it removed because it was quite large and very noticeable. When I went to the dermatologist she said it didn't look right to her and she did a biopsy. The biopsy came back as a lipo sarcoma and I was referred to an oncologist right away. Then the began the staging process, they needed to make sure that it hadn't spread beyond my arm. This meant an MRI, CT, and a pet scan of my chest, since that's the first place it would spread if it spread at all. Unfortunately for me I also discovered that I have a lung disease which causes spots of immune cells on my lungs. They figured that out by process of elimination after lung biopsies (not a pleasant procedure)The good news is that it wasn't cancer they were seeing on all those scans. Once that was determined I was referred to a surgical oncologist who took the tumor out of my arm last friday. As I said my tumor was quite large (about 5cm) so they had to do a skin graft to close the wound and I now have a very large crater in my arm. It's been quite painful, I never realized how much I use my arm! But they were able to get it all out. I found out today that the skin graft took and new skin is growing. While there is a large dent in my arm the scar doesn't seem like it will be that bad. It's better than knowing that you have something like cancer growing in your body. I hope this helps you! I know that when I was going through all of this there wasn't much information I could find about what to expect, so it left me with a lot of questions and a lot of anxiety. Due to it's rarity there isn't much information out there, and the information that is published tends to be about more extreme cases. Don't let that scare you! I'm here if you have any questions or need to talk to someone who's been through it :)

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