Newly Diagnosed / New to Forum

sjwetzler · Posted: Sun Oct 21, 2007 4:53 pm Post subject: Newly Diagnosed / New to Forum

I was diagnosed with a leiomyosarcoma on my right foot last week. I had a small <2cm lump removed because it was rubbing against my shoes and hurt. My primary care and dermatologist thought it was a granuloma before the path report came in with the leiomyosarcoma diagnosis. Surgery has been scheduled but right now it's pretty wide open on what will need to be done because the original removal was only skin cells. The least they'll do is a wide excission of all skin layers in about a 4 in. diameter with skin grafts, but I've been told if it's deeper at least my large toe and metacarpal will need to be amputated - maybe more.

I've done a lot of searching and can't find much information on leiomyosarcomas on extremities like mine. Seems more are either in GI tract or uterine. Anybody out there have any info for me? I'd appreciate hearing about any similar situations. Thanks.
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Sally

10/07 Leiomyosarcoma

brainman

Hi Sally, I have never heard of a leiomyosarcoma but there are a lot of cancers that I am not familiar with. Could you educate me? I moved it to the Other Cancers Forum but if needed, I can move it to a more appropriate forum. I am very sorry that you might need to have your big toe amputated.

I am very sorry about your cancer and I hope that you can find the support and information you need on the CF.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

sjwetzler

Jim - Thanks for the post. Here's what I've found out about leiomyosarcoma (LMS). It's a form of soft tissue cancer that's pretty rare. From my reading sarcomas make up about 7% of cancers and LMS only a fraction of that. Usually occurs in uterus, GI tract, but not always (obviously). It's amazing what one can learn in a week with the internet. At this point they can't stage or grade mine so I'm not sure what the next steps will be. Luckily it's an extremity which is easier to treat. I may need radiation in addition to the surgery. After the surgery I'll be seeing an oncologist and if it's very deep I'll probably try to get to a sarcoma treatment center.

Will try to keep checking bck here and maybe post again. The waiting is what's really driving me nuts.
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Sally

10/07 Leiomyosarcoma

brainman

Sally, the owner of this forum and one of the other Administrators are doctors. Hopefully, one of them will reply to your topic.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

DocSeiwert · Site Admin Joined: 14 Oct 2007 Posts: 20

Dear Sally,

Leiomyosarcomas are rare soft tissue tumors accounting usually for <5% of all sarcomas (Sarcomas make up ~1% of all cancers). Leiomyosarcoma of the extremities though are even rarer. In short they are exceedingly rare.

I did a Pubmed search (database for the world medical literature) and came upon a case series of 42 patients. I have provided a link below and will try to email more info to you.

Generally these tumors tend to be aggressive and if advanced carry a very poor prognosis. Surgery as well as chemotherapy and radiation all appear to be used (depending on the specifics of the tumor, which I dont know) - although let me caution that I am by no means an expert for this rare tumor. From your description it sounds like the tumor appears to be comparably small which is probably a good sign - nevertheless this is a tumor that can behave aggressively. Definitely you should follow-up closely with your physician.

Given the rarity - I would strongly (!!!) urge you to also go to a large referrral center for sarcomas (the more experience they have the better) at least for a second opinion if not for treatement. Typically large University hospitals, but even there are differences.
In general this can make a substantial difference if you have an experienced pathologist look at the tumor who can tell how aggressive the tumor looks, and you see a surgeon who has operated on similar tumors in the past and knows their clinical behavior.

See below link: http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15135488&ordinalpos=32&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

I hope this provides some initial help. Good luck.

DocSeiwert
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Tanguy Seiwert, MD
Medical Oncologist, University of Chicago

Disclaimer: This information is for informational purposes only and is not medical advice. Please always consult with your physician.

sjwetzler · Posted: Tue Nov 13, 2007 7:45 pm Post subject: Post Surgery Update

First I want to thank everyone who has particpated in this forum and helped me get information - especially DocSeiwert. I had the surgery to remove the leiomyosarcoma (LMS) on my foot. Ended up having my right big toe and joint amputated along with a wide excision of the actual lesion site on the side of my foot and of course all the attendant skin graft. So far so good. The initial path report showed wide clear margins and while they are running some additional histological testing it looks like the lesion was isolated and removed. The surgeon found another small lesion under another toe in the joint fold but luckily that was just a benign nevus.

I meet with the oncologist in the next week or so after all the path reports are back to decide what next steps. I've already decided that no matter what I'm going to at least get a second opinion or case review done at a Sarcoma Treatment Center. While everyone keeps saying how lucky I am to have caught it so early and when it was small and that it surgery was a good option, I still want to know I've checked with everyone to ensure I'm walking down the right path.
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Sally

10/07 Leiomyosarcoma

derekinSA

Hi Sally

I applaud your attitude towards this whole thing. I love the way you are taking charge of what you think needs to be done.

Getting the information, getting a 2nd opinion, taking charge of what you have to do to get through this.

Brilliant !!!!! Very Happy

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With Love
Derek

Cancer Survivor, in remission since July 07

Life coach

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