Diagnosed with sarcoma? Let's share

Thank you for your advice

It is grim but the only way to stoop. It. I with I had had my right leg amputated with the first tumour. I had invasive resection. Lost femur and knee. And 3 quadriceps .

3 months later it had metastasised and there is no stopping it. There is no treatment. I now have 9 active tumours.
Early surgery is the only option. Please choose it for your boy.

I would get a second opinion if you can.

My son has chrondrosarcoma. Started in knee doctors want to amputate whole leg not sure about this

I had a large chondrosarcoma in my pelvis removed in 2015. No symptoms at all. Discovered during other routine examinations. The superior pubic remus bone was removed and some of the abductor muscles. Clear margins. All fine to 2019 then x rays regularly thereafter. In July 2023 again no symptoms but as the result of a CT scan for possible diverticulitis it showed again. No x rays had show it! Biopsy in August 2023 showed recurrence of grade 1 slow growing chondrosarcoma.
Watch and wait. MRIs every 6 months. In the last 12 months it has started to grow again and I am planning surgery to debunk the tumor in February

To remove it totally would mean the loss of the hip joint which I will not consider

Does anyone else have a similar situation?

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/

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.

What did your doctor recommend?

I have the same diagnosis.

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!!