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Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
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I got diagnosed with chondrosarcoma. I am 43 years old and will be 44 in a few months. Certainly hearing the C word is scary but I'm staying optimistic because freaking out or panicking does nothing so my thoughts are I will just work on it and get it cleaned out and move on with my life.
It started about 4 months ago with pain in the temple and a lesion found near the temple and also pain in a very fine line on my head and also pain behind my left eyeball and around my left nose area like sinus pain.
I'm wondering if there are things I should be eating or drinking to try to fight the cancer or prevent it from spreading or anything that is good for the cancer fight.
Any thoughts or advice are appreciated!
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2 ReactionsI'm ok the hospital gave me a fit bit to wear for 12 weeks I was getting a Weekly report I haven't heard anything since the study ended I believe they want me to do it again in a year the case was forwarded to Dr.andrew folpe at the mayo clinic think you for reaching out
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1 ReactionWelcome, @kenroy. I moved your message about fibroblastic soft tissue sarcoma to the Sarcoma support group here: https://connect.mayoclinic.org/group/sarcoma/ where you can meet others with soft tissue sarcoma.
I'd be interested to hear more about the Fitbit study you did.
Did you have any treatment after surgery? How are you doing now?
I had fibroblastic soft tissue sarcoma.Dr shawtz at Vanderbilt removed a 13.5cm tumor from my leg. I have lost most of the feeling in my leg. I donated the tumor to the mayo clinic and did a12 week fitbit cancer study.im doing an mri and cat scan next mouth.no one in my family has had cancer
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1 ReactionI have a Mycoid Liposarcoma of the Right Calf and I am scheduled for 25 Radiation Treatments - so far I have completed 12
Some fatigue ut generally feeling good - no pain
I am also in a Pre-Surgical trial for Physical Therapy to determine if this will help in the recovery after surgery
My husband has been diagnosed with undifferentiated Pleomorphic February 2024 and received 24 Radiation sessions
can I ask where the tumor was located
Yes. I had a pretty big tumor but was only in hospital 3 nights then rehab for a week
have you had your surgery yet - Mine is scheduled for May 5th - I was told 7 to 10 days in hospital because of the flap - not looking forward to the hospital stay
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1 ReactionThat sounds great ! I had no advice during radiation. It was hard on my skin and me in general. Be glad you are in that pre surgery physical therapy!!