Diagnosed with sarcoma? Let's share

Can definitely relate to that

Two growths for me but not as large as original tumor which was 15 pounds. No pain with that one either just gastric output problems due to it pushing everything to right in my body.

I was recently diagnosed with recurrent liposarcoma. My previous tumor was retroperiteneal 9 pounds and successfully removed 16 years ago. This is my first recurrence and I have another 4inch x 6 inch tumor in my abdomen. I am scheduled for surgery at Mayo Clinic in Rochester Jan 7. I live in New Mexico but it is very hard getting efficient, effective medical care here. I am reeling somewhat from the news and need for more surgery. Mostly right now I am very, very tired and struggling to keep up with my life. I am very interested if anyone has found positive ways to deal with fatigue.

I was recently diagnosed with Well Differentiated Liposarcoma. I had had a large mass on my ribs, between the oblique muscles, that my doctors thought was a lipoma and advised me to leave alone. It got so large that it caused pain with certain movements, so an acupuncturist urged me to have it removed. Two weeks later the pathology report showed it was cancer, not a lipoma. I have since been to MD Anderson for evaluation, and will be returning every 4 months for MRI monitoring. I realize that I am lucky to have a slow-growing cancer that rarely metastasizes, but just the thought of having cancer left in my body (the surgeon thought it was a lipoma, so took it out in pieces, without trying to get it all or assure clear margins) is a little disconcerting. Is anyone else dealing with this type of cancer? Would love to hear your thoughts!

How long have you had the mass? Had it ever been biopsied? I’m curious because I have a large lipoma on my side…sort of on ribs. It’s been there for 20 years! When it first appeared, I had a surgeon examine it and do a biopsy, which was fine. Wish I had removed it then. Why, oh why didn’t someone encourage me to remove it then……anyway, it started bothering me this year and I had scheduled to have it removed, but had to cancel due to family emergency. Looking forward to getting it removed. Now, I am wondering if it might be more than just a lipoma. I asked the surgeon at my consultation about cancer and he said no way. Idk.

I had had it for a year at least. Not sure how long it was there before it became obvious. I was having other health issues and CT scans and MRIs all showed a large mass, but the radiology reports always said it was a lipoma. Four different doctors said it didn’t require removal unless there was pain involved or I didn’t like the appearance. Not one suspected cancer. If I had it to do over, I would have had it removed immediately. I hope yours is a lipoma!!

I have the same diagnosis.

What did your doctor recommend?

I had surgery in 2020. However due to location of tumor they didn't get clean margins. In March of this year they determined I have a recurrence in two locations. I went for a second opinion at Duke. No surgery, tumors to close to arteries. Chemo and radiation not recommended as it's a slow growing cancer. I've switched to a plant based diet, gone sugar free and had some genetic testing that has recommended natural suppplements that might inhibit growth. Otherwise they increased frequency of CT scans to try to determine rate of growth.

Hi @fionap, I add my welcome. You may wish to connect with other members in this discussion focused on chondrosarcoma.

- Does anyone have chondrosarcoma?
https://connect.mayoclinic.org/discussion/chondrosarcoma/