Does anyone have 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.

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@richard515

All the choices we have to make are terrible ones. I too could not face amputation of my right leg and chose resection. . It has since metastasised to my left leg and hip and right humerus. I don’t look sick and if I am in bed I don’t even feel sick. But when I try to stand…it is all very surreal. We are having slow public deaths and there is no manual. Strength to you.

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Have you done anything to change your diet since your diagnosis? Would you be open to communicating with my husband as your cases are very surreal and similar in areas of this cancer.

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@dmopao80

Have you done anything to change your diet since your diagnosis? Would you be open to communicating with my husband as your cases are very surreal and similar in areas of this cancer.

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I would be very happy to .

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@sherlock999

Hey, folks. Someone asked above about other people with chondrosarcoma. I had a bone tumor in my little finger when I was 27 years old. The bone broke when something relatively light fell on it, and when it was x-rayed, they found the tumor. Because tumors in the hand are almost always benign, they diagnosed it as benign in spite of a rather ominous biopsy report (which I didn't discover until years later) and sent me on my way.

Nine years later, the same thing happened. I had a pathological fracture in the same bone while bracing my hands on a horse's neck as we went over a jump. Again, they scooped the tumor out and used bone chips from elsewhere in my body to fill the tumor in.

Three years after that-- yep, the same thing. This time they found it before I broke it because they were following me intermittently. I insisted they run imaging because that bone was hurting so much. The hand surgeon thought it was just pain from my hand being operated on repeatedly. Sure enough, the tumor was back and this time it had grown through the end of the bone into the joint space at the base of the finger. I had another surgery to remove it. I asked the hand surgeon directly if the tumor could be malignant, and he insisted it couldn't be. Then I fired him and referred myself to an oncologist with expertise in bone tumors. The oncologist was alarmed by this history and referred me to another hand surgeon, who monitored me from that point.

About a year later, imaging shows that the tumor was back. This time it was diagnosed as a chondrosarcoma, and the oncologist and hand surgeon concurred that I would need that finger and underlying bone in the palm of my hand amputated. Frankly, I was fine with that, given that the joint hurt almost all the time, even when I wasn't using my hand.

That last surgery was almost exactly 25 years ago. I'm happy to say I haven't had any more bone tumors since then. I hope this is encouraging to others who might have weird bone tumors in their hands.

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@sherlock999, wow. Your story underlines a number of important things, like how important it is to advocate for your health. You knew something wasn't right. Your story also gives hope!

Did you find that adapting after the amputation you had more use of your hand since the source of constant pain was gone? What is hard? Are you still jumping horses?

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