Beginning the Chondrosarcoma Journey

Beginning the Chondrosarcoma Journey


What would happen if no surgery is done to remove chondrosarcoma?

Chondrosarcoma will continue to grow and become more aggressive, the longer it is left in the body. Depending on the location in the body, it can cause considerable problems with other organs. Chondrosarcoma on the rib cage, for example, can grow to the point of puncturing a lung or causing problems with the heart. Chondrosarcoma in long bone, such as a leg or arms, can eventually cause spontaneous fracture. Chondrosarcoma located close to the joints can cause separation of the joints. Untreated chondrosarcoma can cause tears in muscle or ligaments, cause severe nerve damage with numbness or prevent blood from flowing properly through the vasculature resulting in clotting or crippling. Untreated Chondrosarcoma, depending on the staging, can be so aggressive as to cause death.


Vicki said...

Hi Elizabeth! I have learnt more reading this website than I have in years of searching on the Internet! Thank you for providing hope for people suffering from chondrosarcoma! Could I ask how long ago you was diagnosed with metastasis to the lungs? My partner has metastasis to the lung after been clear from bone tumours in his leg which was amputated! That was 4 years ago! He got diagnosed with lung metastasis 18 months ago in both lungs! He had multiple nodules removed from them in sept/oct 2011 and recovered well! His scans were clear for about 9 months then they found more nodules about 6 months ago and were reluctant to operate again! There have been no new nodules since then and no significant growth! They are very small! Life expectancy with metastasis to the lung we seem to read is between 2 & 5 years! This is devastating and terrifying! You are the first case I've ever read of someone who has lived for a long while with this! Hence why I wondered when you had spread to ur lungs! I need some hope to cling onto!

Elizabeth Munroz said...

Hi Vicki,
I'm grateful to know my site has been helpful for you. It's not the ultimate in scientific information, just what I know as a patient, only.
I was diagnosed with the lung mets in 1991. At that time there was no attempt to surgically removed them. They grew for two years. The largest grew to 2.5 cm. At that time there was no further growth. I want it clearly understood that this is extremely unusual. I believe and so does one of my oncologists that this happened because of a clinical trial I participated in back in 1971. It was meant to "vaccinate" me against my chondrosarcoma. One of my recurrent tumors was removed from my body. Then it was mixed with killed tuberculosis germs and something called Freund's Complete Adjuvant (which is presently not allowed to be used in humans). Up until I had that treatment I had been having aggressive yearly recurrences. After the injections, I didn't get any recurrence for another four years. Another four years after that I had another recurrence. Then eleven years passed by until the lung mets came along. Because I have a number of autoimmune diseases and because the lung mets no longer grows it is believed this vaccine trial took effect on my body. Since there were no other chondrosarcoma patients in the trial and because I had the two recurrences it was previously believed the trial didn't work for me. However, the trial did work for some other patients who had a form of bladder cancer and this method is still the treatment for it, with some changes, as I understand it. Unfortunately, I now have leukemia. Is it a long term result of the trial? I don't know. I have not encountered another person with chondrosarcoma metastasis who did not succumb to it. I know of a few who have been able to have their lives extended, like your partner having the nodules removed. I am aware of a few people who have had Radio Frequency Ablation (RFA) and something else called Trilogy

There is also a very hopeful clinical trial going on right now for a new drug called Votrient. It would be worthwhile to give a call to those who are listed as contacts at the bottom of this link page:

Dolla Dolly said...

Hi, my aunt is diagnosed with Chondrosarcoma. Her right arm on top of her shoulder is swollen. The doctor suggested to amputate the whole arm from the shoulder blade. However, she is hesitate to amputate the whole right arm. She consulted the specialist whether is it possible to remove tumor only. Further CT Scan yet to be done. What is possible to happen if we just remove the tumor only?

Elizabeth Munroz said...

Dolla Dolly, If your aunt is seeing an orthopedic oncologist sarcoma specialist and the suggestion is amputation, that's probably the best thing to do. There's a big difference between losing the arm and losing life. However, if possible, perhaps a second opinion might be useful.