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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 1 day ago | Replies (806)

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@debscan68

Are you currently being seen at Mayo? I was diagnosed in July also and was referred to Mayo which took a while to get a call and get things scheduled. It seems once I was scheduled there things have been moving along. I found out that Chondrosarcomas do not respond to Chemo OR Radiation so my only choice in this is surgery which is major! My first surgery will be on Nov 27th and they will cut 3 nerves. I will no longer have bladder, colon, or sexual functions. The 2nd surgery is when they will cut out a large part of my sacrum. Seeing as my sacrum supports my pelvis, I will no longer be able to do certain things or lift anything heavy. If I fracture the remainder of my sacrum there is nothing they can do for me. After surgery I will have to learn to deal with a colostomy bag and also learn to cath myself. I won't be able to sit for 4-6 weeks. I can only be on my right side or standing. UGH...I am way too young to be dealing with all of this. (I am 55) It sounds like chondrosarcoma may be a genetic thing so I enrolled in the Mayo research. I have 9 appointments coming up before my surgery. I think they are looking for another cancer in my body. I get really nervous when they want more scans but at least they are being very thorough. I guess I just have to trust what they tell me and do what they tell me to do. I can't wait for all of this to be over wih although I'm sure I will have to deal with some of it the rest of my life and pray that cancer does not show up anywhere else down the road. I am so sorry to hear of everything you are going through. Lots of stress having to wait things out and wonder if they are doing the right things. I do trust the Mayo over any other clinic or hospital though. My doctors have been awesome!!! Prayers and hugs to you.

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Replies to "Are you currently being seen at Mayo? I was diagnosed in July also and was referred..."

Good morning! My heart goes out to you. Ie been praying for you since I read your comments yesterday. I didn’t have time to respond but I haven’t been able to get you out of my mind. You must be terrified. Those things they want to do to you to save your life will also remove your quality of life? Is that how you see it?? I know sometimes it seems like we are backed in a corner and we aren’t given a choice. My first oncologist at City of Hope said to me when I told her I didn’t want to take hormone blockers (for breast cancer I had removed)“what are your options?” That was a slap in my face. I realtor I want to live I have to take them. I getting ready to start my 4th hormone blockers. I have bad arthritis and when I take the hormone blockers I become crippled. I limp and I can’t get out of my chair. I’m not a heavy person so it’s not my weight. It induces excruciating pain in all my joints. It’s aweful. So idk what I’m going to do. Now I’m faced with this possibility of bone cancer and I hear your story and I just can’t imagine how you must feel. I’m so sorry you are going through all this. You have had to make some life preserving decisions and I’m sure it’s not been easy. Do you have family and friend support? I’m curious what your symptoms were. What brought you to the doctor in the first place? You are right. . . . You are too young to be going through all of this. Did they say what causes it? You said it’s possibly genetic so maybe that IS the cause. The doctors I see just keep telling me “you have bad genes.” 🥲 I will keep praying for you.