My husband has had two chondrosarcomas removed from his skull?

Posted by skullbasecancer4 @skullbasecancer4, Mar 18 10:45am

Just wondering if anyone here has had a Chrondrosacroma removed from their skull . The second time around a small piece was left near his curated artery and it was too dangerous to remove . We are currently being watched by University of Miami doctors . Just trying to find anyone who has been in this situation and proton therapy worked for them . He already had area radiated on 27 years . So
Now we are are at a watch and see , if things change . I am very concerned and worried .

Interested in more discussions like this? Go to the Proton Beam Therapy Support Group.

Hi @skullbasecancer4, I can imagine you are concerned and worried with this new development of your husband's 27 year journey with chondrosarcoma of the skull. I'm tagging @stin26, who also faced this diagnosis in the hopes that they may have some experiences to share with you.

Watch and wait as a "treatment" can be so unsettling, like you're just waiting to the other shoe to drop. That's why I prefer to call it active surveillance, which denotes proactivity. It sounds like your husband's doctors feel that, despite finding a small sarcoma, treatment is riskier that simply monitoring it. By actively monitor it, they will know when action is better than leaving things as they are.

Did the cancer team suggest that proton beam may be an option when/if they time comes?

REPLY
@colleenyoung

Hi @skullbasecancer4, I can imagine you are concerned and worried with this new development of your husband's 27 year journey with chondrosarcoma of the skull. I'm tagging @stin26, who also faced this diagnosis in the hopes that they may have some experiences to share with you.

Watch and wait as a "treatment" can be so unsettling, like you're just waiting to the other shoe to drop. That's why I prefer to call it active surveillance, which denotes proactivity. It sounds like your husband's doctors feel that, despite finding a small sarcoma, treatment is riskier that simply monitoring it. By actively monitor it, they will know when action is better than leaving things as they are.

Did the cancer team suggest that proton beam may be an option when/if they time comes?

Jump to this post

Hi. Thank you so much for connecting me to someone else , who has this . It is such a rare tumor and even more the location is so dangerous. At this point , they just don’t know what the treatment would be yet . The piece they had to leave, is so close to curated artery . We scan again in late May . The unknown is beyond hard for me .

REPLY
Please sign in or register to post a reply.