Diagnosed with sarcoma? Let's share

The coccus I’ve unit of centracare in St Cloud has benn very helpful. In particular, the exercises to increase my visual space borders This involves using thumb tracking excercises.

Welcome to Connect, @creedyfly. I'd like to introduce you to @kathythornjohnson and @godsgotthis, who also have myxoid liposarcoma. I hope they will return to share experiences with you.

In the meantime, back to you Creedyfly. Have you started rehab? What concerns you about rehab with composite functional thigh flaps?

In July 2019, I was diagnosed with a Myxoid Liposarcoma in my right thigh (just above the knee). I completed the five weeks of radiation and was impressed with the professionalism and individual care provided by the radiation oncology department. Other than fatigue and the burn appearance to the leg (that really appeared two weeks after the completion of radiation), the radiation had minimal other side effects. The radiation worked well to minimize the impact of the tumor prior to surgery. Now two months following surgery (that was very impressively performed by the Mayo teams), I wonder how others with invasive leg surgery (particularly if there are others with functional flaps) worked through rehab. Chris

I had my surgery 2.5 years ago. I am slowly feeling better. From what I understand, I am cancer free. If I get recurrence, then genomic testing would be done.

I have started aggressive chemo treatment first, then planning mastectomy in January. They will do genomic testing when I have surgery. I am currently doing well but just started chemo a few days ago.

Hi @sherip how did the consult with the breast surgeon go? How are you doing?
@zazu, how are you? Did you ever consider genomic testing?

Good luck! I’m curious about the genomic testing. Let me know how that goes

Thanks so much for your reply! I am seeing a breast surgeon today and will know more about my sarcoma team. I know we can beat this!

I had sarcoma (undifferentiated pleomorphic spindle cell) between two ribs possibly caused by radiation after a lumpectomy 18 years previously. I recommend going to a sarcoma center like Mayo, MD Anderson, Dana Farber, or MSK. It’s very important to assemble a team for your care with multiple disciplinary backgrounds. It is extremely rare but increasing due to breast conserving treatment. Ask for genomic testing on the tumor. I’ve had 5 surgeries including bilateral mastectomy because I developed a different cancer in the same breast a few months later. I didn’t truly understand how aggressive this is, I just wanted it out. I know it’s overwhelming and we are walking through a groundbreaking time in this type of cancer.

Hi. I just got biopsy results back indicating angiosarcoma in my left breast probably due to radiation treatment I received for breast cancer 6 years ago when I turned 50. I also had 8 lymph nodes removed back then so I’ve been dealing with lymphedema in that breast. I had a bruise that went away then returned about 8 months ago. Didn’t think much of it till it started to spread and the skin thickened. I know this is rare and am seeking the best care. Any help appreciated.