Chondrosarcoma

Posted by kathleenkin @kathleenkin, Dec 11, 2019

Does anyone have chondrosarcoma? This is my fifth surgery and was told there are seven tumors in my left lung. I have already lost my right lung.

My first surgery – a 4-1:2 lb tumor out of my right lung

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Hello @kathleenkin and welcome to MayoClinicConnect. This link should take you to the site where people can discuss their experience with sarcoma. No one on Connect is a doctor, we’re all volunteers sharing information and support. https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/?pg=1#comment-62361. I hope you can hear from others soon.

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Hello, @kathleenkin,

I would also like to invite @merpreb to this conversation. She has dealt with lung cancer for many years and she might be able to be an encouragement to you.

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@kathleenkin– Good morning. Boy that was some tumor that I am sure you are glad to be rid of! My cancer is a sub-group of adenocarcinoma of the lung. It's called Multi-focal adenocarcinoma of the lungs. I'm not familiar with chondrosarcoma other than the fact that it begins in the bones and connective tissue and metastasizes from there. Other than your lung removal what were the other surgeries for? How are you feeling? Are you very short of breath?

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All of my surgeries have been for chondrosarcoma. After the big tumor, they went through my chest and took out nine tumors from both lungs. Two years later they went down to my right lower lung and took out three tumors. Two years later they took out my right lung. December 6 of this year they took a tumor off my chest wall. That is when I found out I have seven more tumors in my left lower lobe lung. Chondrosarcoma is very very rare and there are no treatments for it. The only thing they can do is surgery. I am Not going to have surgery on my left lung until it gets unbearable. I actually am breathing at 99% with one lung. Praise God.
What are your symptoms? Are you doing ok?

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@hopeful33250

Hello, @kathleenkin,

I would also like to invite @merpreb to this conversation. She has dealt with lung cancer for many years and she might be able to be an encouragement to you.

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Mine is a very cancer. My doctors in Spokane, WA sent my tumors all around the country. All they know is that surgery is the only answer. You can only go so far with surgery. They have not found anyone else with chondrosarcoma

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@kathleenkin

All of my surgeries have been for chondrosarcoma. After the big tumor, they went through my chest and took out nine tumors from both lungs. Two years later they went down to my right lower lung and took out three tumors. Two years later they took out my right lung. December 6 of this year they took a tumor off my chest wall. That is when I found out I have seven more tumors in my left lower lobe lung. Chondrosarcoma is very very rare and there are no treatments for it. The only thing they can do is surgery. I am Not going to have surgery on my left lung until it gets unbearable. I actually am breathing at 99% with one lung. Praise God.
What are your symptoms? Are you doing ok?

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@kathleenkin– Good morning once again. You have endured quite a bit and I don't blame you for putting off any further surgery until you really have to have it. Have you considered a second opinion? I think that it would be a very good idea, even if you have to travel- that is if you can.

Thank you for asking. Right now I am doing very well. I have 4 but right now they are indolent. But like you, I'm looking over my shoulder all the time for the next one. I am missing my right lower and left upper lobes. I've had 2 surgeries, chemo and radiation (proton and photon).
https://www.curesarcoma.org/patient-resources/sarcoma-subtypes/chondrosarcoma/
https://www.chordomafoundation.org/learn/diagnosing-chordoma/
https://www.hopkinsmedicine.org/health/conditions-and-diseases/sarcoma/chondrosarcoma

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I am blessed to have my tumors reviewed by the tumor boards in both Spokane and Seattle. My cancer is extremely rare. My doctor wants me to wait until the tumors are bigger before surgery as that surgery will impact my life. I actually don’t worry about it. I intend to enjoy every minute of every day. My breathing is at 99% with only one lung. Chemo and radiation are not possible.
I hope you start to feel better. Be positive and enjoy each day. God bless

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