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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: Jan 14 7:15pm | Replies (873)Comment receiving replies
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.
Replies to "Good morning! My heart goes out to you. Ie been praying for you since I read..."
I am happy to hear that you have a MRI coming up on Friday. Finally maybe some answers for you. Which surgeon are you seeing? I have Dr Karim and he is AWESOME!!! Explains things in a way you can actually understand and is very caring. I'm so happy I have him as my orthopedic oncologist. He told me that I most likely have had this cancer growing for a long time. I guess it is a slow growing cancer. Keep me updated on your progress and I will be praying for good news for you.
I do have lots of family and friend support which makes this all a little easier to deal with. I'm very thankful for that. How about you? Do you have support through everything you are going through? I hope so!!! My symptoms started last January when I started having constipation which eventually led to sciatic nerve problems. I was in horrendous pain across my whole right butt cheek. I saw SEVERAL doctors and even went to the chiropractor for weeks but it kept coming back. I could barely sit and it hurt constantly. They kept saying its this or that but I knew inside that something was going on. I finally left work one day and took myself to the ER. Finally found a Dr in the ER that did a MRI on me and found the mass on my sacrum. I was admitted to the hospital so they could do a biopsy. They sent my biopsy results down to Mayo and it even took them a couple months to finally figure out that it was Chondrosarcoma. No chemo or radiation....only surgery can take care of this type of cancer. I'm pretty nervous about my major life changes but I am not ready to die so I will deal with what is coming. I have never had a MAJOR surgery before so not sure what I will be waking up to besides pain. I just always tell myself that I will get through it. They do a major pre op exam down at Mayo so that makes me feel better anyway. Sometimes I just feel like this is all a bad dream!!!
How are you doing? I haven't been on here in quite a while. I had a successful surgery and now I am learning to walk on my own again. (I can walk but with a walker most of the time.) I still have pain after 6 months but I will have to wait about 1 year or so to find out where the pain will actually be for life. Now to get through my scans every 3 months without any setbacks. The colostomy doesn't bother me a bit but cathing myself? That's another story...I HATE it. I can't even wear underwear anymore. I'm stuck with the adult diapers. I guess I shouldn't ever complain because my AWESOME surgeon/Dr. has given me my life. I will be forever thankful for everyone that was involved in my surgery and care. I met a lot of great people being in the hospital for 1 month and then moving on to rehab. I was so happy to go home and have come a long way since surgery.
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I didn’t answer your question. I have waited 6 weeks for just an MRI of the echondroma/Chondrosarcoma in my rt femur at Mayo. I will finally get it done this Friday and I will see the surgeon next Wednesday Oct 18th. I have to admit I’m scared. My last blood work was indicative of bone cancer. My hips and back have hurt for a few years. I have a bad back so I thought that’s what it was but now I’m thinking it is the Chondrosarcoma that can only be repaired by surgical removal. If they have to amputate my leg and remove part of my hips and pelvis idk what I will do. Please let me know what your symptoms were.