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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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Rhabdomyosarcoma Cancer in right thigh. Has anyone out there had this type?
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1 ReactionThank you. I’ll check them out.
My husband was doing better after surgery on Jan 9th. Though the last 10 days recently due having a spinal fluid leak and had to be in the hospital for 5 days with heavy packing in his nose and lumbar drain, he has been miserable.
. We pray 🙏 today when they final remove packing from his nose , he will get some relief . Now we hope the plug holds . We won’t know for 5 weeks . Then we will have to meet with oncologist. Going day to day . This was a major serious set back and complication. It has been extremely difficult for me to see him more miserable then after brain surgery . One day at a time . His tumor is rare , especially since it was in the skull.
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4 ReactionsThinking of you❤️
Hi @skullbasecancer4, you can see your previous post to @stin26 here: https://connect.mayoclinic.org/comment/832208/
How is your partner doing? How are you?
Have you had the same tumor and location? Did you ever do additionally treatment? How frequent was yours? What grade was yours? May I ask your age? Thank you
Where do I find that . This is patient’s wife. Just learning how to do this.
blessings!
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1 ReactionJust curious did you decide to take the meds and are their bad side effects ? I am so sorry.
That is a great idea . As I wife to to my husband ,who has had two base skull Chondrosacroma ‘a. First time it was removed 27 years and was level one. His symptoms were hoarse voice and back pain . It took many doctors to finally find it . I had to be a strong advocate to keep trying to find a cause of symptoms. He had it removed from a neurosurgeon and ENT . Amazing doctors at Jackson Memorial Hospital at that time he was 27. He had radiation. He had been completely healthy and we thought our nightmare was over . Until 6 months ago , no symptoms, routine scan …… another tumor was detected further down the bone in the skull. He again had surgery to remove , but this time , it was a level 2. He was recovering well, until he developed a spinal fluid leak . Ugh. Now he is home again recovering from that . We have spoken to an oncologist but have not decided what route to go yet . He is 57 now and has gone thru so much . It has been very difficult for me to see. Our doctors have been amazing . This time neurosurgeon was Dr. Morcos and same ENT at Jackson Memorial Hospital in Miami. If anyone has any questions, please feel free to ask . Also any support from anyone who has been through this.
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