Urgent help needed - large sarcoma in thigh

painterguy

My girlfriend finally went to have an MRI of a very large lump in her thigh that has been there for 15 years. It is VERY large (about 6 inches). The MRI suggested sarcoma. We went to two orthopedic oncology surgeons at the top of their fields and head of their departments: John Abraham at the Rothman Institute of Jefferson Hospital in Philadelphia AND Richard Lackman at Cooper University Hospital in New Jersey which just merged with MD Anderson. 

Dr. Abraham did a CT assisted biopsy taking only about five very tiny strands of tissue in one area of this massive lump. The findings were as follows:

"The differential diagnosis includes a low grade fibrous neoplasm or perhaps a low grade fibromyxoid neoplasm. The degree of myxoid change is minimal. The quantity of tissue limits a definitive interpretation since such lesions often show considerably regional variability. Recommend complete excision of the lesion. Microscopic Description: The lesion consists of bland spindled cells that resemble fibroblasts. Immunochemistry for S100, actin, and cd34 are negative in lesional cells. Beta-Catenin shows only cytoplasmic immunoreactivity. Vimentin is, in contrast, strongly positive. Ki-67 marks very rare cells."

Dr. Abraham said that this biopsy did not indicate sarcoma exactly but did indicate abnormal, low grade cells they could not identify with such a small specimen. Dr Lackman said that he thinks it is indeed sarcoma but the sample was not big enough to determine.

 

Dr Abraham would like to proceed by going in with a very large incision and taking out both the lump and a margin of muscle "just incase".

 

Dr Lackman would like to do a smaller incision, take a chunk out, and while she is still asleep, look at it under a microscope. Then, if it is cancer he will sew up the incision, leaving the lump, then proceed with radiation and take out the lump after rounds of radiation are done. If it is not cancer he would just remove the lump without taking muscle margin. (I am pretty sure he did not want to take muscle margin even if it is cancer, and said there is only a 7 percent recur rate and this is a low grade....this seems to be opposite everything we have read)

 

We have an incisional biopsy set up for this Thursday at which point they will either sew up or remove.....but we do not know if that is the best way to proceed. We read a lot about recurrence. Are the recurrences mainly in high grade tumors? Does the size of the tumor determine the grade as well? Is there any benefit to an incisional biopsy and radiation before removal of the mass? It seems most people just get the mass out right off the bat. Is size an issue? I could really use a lot of answers here from people who know about this stuff. How should we proceed? Should we go ahead with the incisional biopsy and possible radiation?

cjjrsdad

Dr Lackman has been my doctor

Dr Lackman has been my doctor since 2007 and has removed multiple chondsarcomas. I trust him 100% with my treatment and I'm sure you'll find he is a very capable doctor. I would trust his opinion and follow his treatment. I know it's hard allowing one person to manage your treatment, but he knows what is best. He has 30 plus years experience with very high ratings. I wish you the best of luck with everything. Feel free to ask me any questions you may have. 

 

Chris 

Nari

Hi, i was diagnosed with

Hi, i was diagnosed with synovial sarcoma stage 3, my tumor was in my upper right thigh and was 10 cm. i underwent 12 hour surgery of removing the tumour it was very complicated as it was incasing my main vein. Iam now doing radiotherapy 6 weeks just finished 2 weeks and after radiotherapy i will reat for 3 weeks then have chemo therapy 6 weeks cycle. this treatment was advised to me by MD ANderson who are supposed to be great in treating all sorts of cancer including sarcomas. Iam a mother of 3 young boys and cant imagine leaving them. 

i believe in living your life and leaving things to doctors and god. Although my cancer is aggressive and my tumour was big i still have hope in surving. Iam also on a ketogenic diet i advise people to look it up although no study shows if it helps cancer patients bas i belive a good diet away from sugar will help anyone especially cancer patients and alot of people have tried it and said it helped them.

 

i cry alot and keep thinking about it and keep imagining that it will come back to my lungs but i just hope i can be strong and live my life normally. i just pray that i will be ok after my treatment and that i will never have it come back to me.

 

 

 

 

Kristen85

Nari said:

Hi, i was diagnosed with

Hi, i was diagnosed with synovial sarcoma stage 3, my tumor was in my upper right thigh and was 10 cm. i underwent 12 hour surgery of removing the tumour it was very complicated as it was incasing my main vein. Iam now doing radiotherapy 6 weeks just finished 2 weeks and after radiotherapy i will reat for 3 weeks then have chemo therapy 6 weeks cycle. this treatment was advised to me by MD ANderson who are supposed to be great in treating all sorts of cancer including sarcomas. Iam a mother of 3 young boys and cant imagine leaving them. 

i believe in living your life and leaving things to doctors and god. Although my cancer is aggressive and my tumour was big i still have hope in surving. Iam also on a ketogenic diet i advise people to look it up although no study shows if it helps cancer patients bas i belive a good diet away from sugar will help anyone especially cancer patients and alot of people have tried it and said it helped them.

 

i cry alot and keep thinking about it and keep imagining that it will come back to my lungs but i just hope i can be strong and live my life normally. i just pray that i will be ok after my treatment and that i will never have it come back to me.

 

 

 

 

ketogenic diet

Hi, 

My sister also doing the ketogenic diet for a sarcoma. She finished her treatments a few months ago for Renal Ewing's Sarcoma and she has been following the ketgenic diet and taking many natural supplements as well. Just wondering how you're making out on diet and if you're doing any other treatments along with it? It's been very difficult to find someone who does this diet for sarcoma's.

Thank you,

Kristen 

PLEOMORPHIC SARCOMA

Take it out

Slow growing but it needs to go. Mine was slow then one day it went into exposive growth.