Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
I am 70 years old and my major reconstruction surgery was October 24, 2016. I have all my functionality. Last year we discovered that the Chondrosarcoma returned on the other side. Dr. Moore removed it and I am still fully functional. Again, my guidance if you want quality of life you have to get a consult with Dr. Moore. If you want to discus send me a private message with your cell and I will call you.
Small cell squamous
Jeff Thanks so much for your reply. I have now signed up with Mayo Clinic Connect and someone is going to call me soon so hopefully that can get me to Dr Moore but will keep you in ready reserve if needed! Couple questions for you - now that you are quite a few years down the road from your surgery, how have you done and are you pleased with where you are? Is there anything that you can no longer do and is your speaking, eating and swallowing functions satisfactory to you? Also, how old are you if I might ask as age can impact recovery time. Truly appreciate your input.
Chondrosacroma skull based. Just had second surgery for removal . First time it was level 1 and second Level 2 . Anyone have this?
The only doctor who was highly confident that he could rebuild the cricoid cartilage that the Chondrosarcoma had pushed into my airway and paralyzed a vocal cord. Dr. Moore had an unconventional procedure to keep all of my functionality, breathing, eating, and talking. A few of the world class doctors we saw recommended a total laryngectamy was the only way to remove the entire tumor. I strongly recommend you go see Dr. Moore. Please share that you reached out to me. Alternatively, I can call him and introduce you. Under any circumstances you need at least 3 to 4 opinions and they will all have a different approach. Let me know if I can provide you with anything else. God Speed!
Jeff K I have a situation quite similar to yours - a chondrosarcoma of my cricoid cartilage. While I have a doctor here in Houston, I would still like to seek out a wider opinion group as you did which led you to Dr Moore. I am curious as to why the other doctors you spoke with could not provide the surgery & outcome you were looking for. At age 71, quality of life is much more important to me than pure longevity. Would love to hear your thoughts as it appears you had an excellent process and outcome. Many thanks EMattson
Wow! My next gen sequencing report just came back. I’ll see what they have to say.
May I ask your age? I am 71 and just starting to face it.
I go on Jan 23 to meet the team that hopefully will be able to tell me what the rest of my life will look like. The pet scan says soft tissue sarcoma. I’m going to Ou in Oklahoma City tomorrow. Since it’s so rare and not many places that seems to be the best. Kinda scared but have been reading as much as possible so I will know what to ask. I have thoughts of what I will do since I’m 71 female and wanting to spend as much time with my family rather than in hospitals. Any thoughts you have I would love to hear from you. Tommie
Actually the surgery was performed at Brigham Womans Mass General where i received my second opinion. Oregon Health and Science , my first opinion. weren’t sure surgery was best