chondrosarcoma

buckpitt
buckpitt Member Posts: 1
edited December 2023 in Bone Cancers #1
Has anyone suffered from the above? I was diagnosed in July, and the location of the tumour was in my shoulder blade. I would like to make contact with anyone with similar problem.
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Comments

  • mrsbe
    mrsbe Member Posts: 57
    #2
    Hi, Im new to this area but i did have a chondrosarcoma only mine grew on the base of my skull up through and around the left side of my brain it was squeezeing everything off so they retracted most of it then i had the root, which was by the brain stem radiated with Proton radiation. Ive been told that they usually appear in the upper body like ribs shoulder spine but rare in the brain.
  • sonneynks
    sonneynks Member Posts: 1
    #3
    buckpitt: My husband was diagnosed with a chondrosarcom of the tibia in Feb. of this year. In April he had an above knee amputation. At this point, they are claiming to have gotten all of the cancer. He does not yet have a prothesis due to complications with an infection and the fact that he still has an open wound. I've done a lot of research on the internet about this form of cancer. It is relatively rare, especially with the location and the size of the tumor.
  • brian226
    brian226 Member Posts: 3
    #4
    I have had chrondrosarcoma in my left humerus and undergone a surgery a few times to rid my body of this disease. I am not sure of the age that you are, but i was only 18 (currently 20) at the time...which is extremely rare to have something like this at my age. The prognosis for the disease is good and at this point in my life i am doing well...and i hope u are doing the same. if u would like to know more...fell free to email me.
  • alittlegirl
    alittlegirl Member Posts: 1
    #5
    On Nov 26,2001 Iwas DX'd with Chondrosarcoma in my right humorous. On Dec 21,2001, I had re-sectioning (curettage),cryosurgery, placement of pins....now in sling..hope to start PT soon
  • cg03
    cg03 Member Posts: 1
    #6
    Dear Buck my sister was diagnosed with chondrosarcoma in her left shoulder in late jan. and was operated on in mid-feb., but with no success. She recently under went her second surgery sept. 26th. If you have any questions please feel free to contact me.
  • dballif
    dballif Member Posts: 1
    #7
    I was dx'd a year ago with a tumour on the back of my tibia. I underwent surgery to remove it and determine its pathology. It turned out to be a stage II malignancy and they did not get it all. In Jan of this year underwent another procedure that removed the top 1.75 inches of my tibia. They put in a hinge in place of my knee. I have had to CT scans thus far showing no growth in my lungs. Having a hinge in place of a knee prohibits me from running or any other impact activity however I am able to walk, golf, bike and swim. I am grateful to live in these times. So far so good.
  • blazerls
    blazerls Member Posts: 1
    #8
    mrsbe said:

    Hi, Im new to this area but i did have a chondrosarcoma only mine grew on the base of my skull up through and around the left side of my brain it was squeezeing everything off so they retracted most of it then i had the root, which was by the brain stem radiated with Proton radiation. Ive been told that they usually appear in the upper body like ribs shoulder spine but rare in the brain.

    Mrs B
    Saw your message on another site also. I have had skull base chondrosarcoma.They are rare indeed of skull.Had first surgery 6/2000.Just informed it's back. Will see surgeon in Jan and take it from there.Would love to talk to you. On your other posting you had wanted to discuss effect and some what compare.Please contact me if you want.
  • LuckyMe611
    LuckyMe611 Member Posts: 3 Member
    #9
    mrsbe said:

    Hi, Im new to this area but i did have a chondrosarcoma only mine grew on the base of my skull up through and around the left side of my brain it was squeezeing everything off so they retracted most of it then i had the root, which was by the brain stem radiated with Proton radiation. Ive been told that they usually appear in the upper body like ribs shoulder spine but rare in the brain.

    Hi mrsbe,
    I too was diagnosed with chondrosarcoma in my head which I was told is very rare. It was very big by the time it was discovered. After 20 + hours of surgery to remove it I have been left with many difficulties. I had 2 surgeons operating on me and they both differ in opinion regarding Proton beam radiation...one is adamant I have that treatment the other says at this point he does not recommend it...I would be grateful if you could give me any information about this treatment and also if your surgery left you with any physical difficulties as mine has? Thank you so very much for any information. There is so little information on this subject and even less when it comes to having this type of cancer in the head...it's easy to feel lost and alone. Thank You again...God bless you and be well.
  • jilloz
    jilloz Member Posts: 3
    #10
    LuckyMe611 said:

    Hi mrsbe,
    I too was diagnosed with chondrosarcoma in my head which I was told is very rare. It was very big by the time it was discovered. After 20 + hours of surgery to remove it I have been left with many difficulties. I had 2 surgeons operating on me and they both differ in opinion regarding Proton beam radiation...one is adamant I have that treatment the other says at this point he does not recommend it...I would be grateful if you could give me any information about this treatment and also if your surgery left you with any physical difficulties as mine has? Thank you so very much for any information. There is so little information on this subject and even less when it comes to having this type of cancer in the head...it's easy to feel lost and alone. Thank You again...God bless you and be well.

    Hi there
    Diag skull base tumour, oct 2004 , surgery dec 2004 partial removal chondrosarcoma, now advised proton beam in usa around january 2006, because of blurred eye.

    would like to hear from anyone that has experienced

    jillian
  • lb6907
    lb6907 Member Posts: 1
    #11
    jilloz said:

    Hi there
    Diag skull base tumour, oct 2004 , surgery dec 2004 partial removal chondrosarcoma, now advised proton beam in usa around january 2006, because of blurred eye.

    would like to hear from anyone that has experienced

    jillian

    Hi Jillian
    Diag skull base tumour, Jul. 2005, first surgery Sep 6 2005 by openning skull to remove part tumor. Second surgery Dec 23 2005 through nose to incise another part, remaining some irremovable part in cavernous sinus. Now, one eye is still skew stemmed from hurt by the pressure of tumor, but better than before. I want to know how fast the tumor grow. I wonder when I will have the third surgery? How long can I survive? Could you give me more status of you?
  • Bevlianne
    Bevlianne Member Posts: 1
    #12
    Chrondrosarcoma in left humerous
    I know I'm late getting to this, Buckpitt, but I wanted to let you know that I, too, had chrondrosarcoma in my left humerous - in 1992, no less! They removed 7 inches of the bone (from my shoulder down to just above the elbow), as well as much of the muscle and tendons in my upper arm. The bone was replaced with a titanium implant. Thankfully, the tumor was contained, and I required no followup treatment. I have full use of my forearm and hand but little to no use of my upper arm. I am one of the lucky ones!
  • Donald Meyer
    Donald Meyer Member Posts: 1
    #13
    Bevlianne said:

    Chrondrosarcoma in left humerous
    I know I'm late getting to this, Buckpitt, but I wanted to let you know that I, too, had chrondrosarcoma in my left humerous - in 1992, no less! They removed 7 inches of the bone (from my shoulder down to just above the elbow), as well as much of the muscle and tendons in my upper arm. The bone was replaced with a titanium implant. Thankfully, the tumor was contained, and I required no followup treatment. I have full use of my forearm and hand but little to no use of my upper arm. I am one of the lucky ones!

    chondrosarcoma
    In May of 2006 I was diagnosed with a chondrosarcoma which was a 55 centimeter tumor enclosed. This was removed along with my left illiac wing. In April 2007 the cancer returned and removed again. This time it was suggested that I do chemo and radiation. I went through 5 months of this. In Dec. of 2008 it was back again and removed. I am now waiting to heal from the surgery and will then talk to the radiation Dr. I have decided not to do chemo again since it is so hard on your body and for no more time that I gained I don't feel it would be worth trying again. Chemo and radiation usually have no effect on a chondrosarcoma. The cancer has traveled through out my left leg, hip, side and back. I have no doubt that it will return. I would like some feed back on other alternatives to fight this and would welcome any comments or suggestions. This is the first time I have found others who have this cancer.
  • goldengirlrn
    goldengirlrn Member Posts: 2
    #14
    Donald Meyer said:

    chondrosarcoma
    In May of 2006 I was diagnosed with a chondrosarcoma which was a 55 centimeter tumor enclosed. This was removed along with my left illiac wing. In April 2007 the cancer returned and removed again. This time it was suggested that I do chemo and radiation. I went through 5 months of this. In Dec. of 2008 it was back again and removed. I am now waiting to heal from the surgery and will then talk to the radiation Dr. I have decided not to do chemo again since it is so hard on your body and for no more time that I gained I don't feel it would be worth trying again. Chemo and radiation usually have no effect on a chondrosarcoma. The cancer has traveled through out my left leg, hip, side and back. I have no doubt that it will return. I would like some feed back on other alternatives to fight this and would welcome any comments or suggestions. This is the first time I have found others who have this cancer.

    chondrosarcoma
    I have heard proton radiation therapy is somewhat effective. I am also recovering from surgery for removal of a tumor in my arm. How long was it before your cancer returned the first time?
  • Zhar
    Zhar Member Posts: 2
    #15
    lb6907 said:

    Hi Jillian
    Diag skull base tumour, Jul. 2005, first surgery Sep 6 2005 by openning skull to remove part tumor. Second surgery Dec 23 2005 through nose to incise another part, remaining some irremovable part in cavernous sinus. Now, one eye is still skew stemmed from hurt by the pressure of tumor, but better than before. I want to know how fast the tumor grow. I wonder when I will have the third surgery? How long can I survive? Could you give me more status of you?

    Adding another name to the list..
    May 2008: Symptoms double vision, headaches, cognitive fog.
    February 2009 Diagnosis upon biopsy: Chondrosarcoma of petrous bone (skull base, in cavernous sinus right side impinging on abducens-6th optic nerve, carotid artery & sphenoid sinus). Partial removal Feb. 17 via transsphenoidal endoscopic approach, still healing - sinus infection yay! and awaiting stereotactic radiotherapy commencing April for 7 weeks.
    Would love to hear from survivors of similar, as it is true there is not much literature on the subject. (My oncologist says that about 5-10 people are seen per year at Princess Margaret Hospital in Toronto, ON)
  • Stefff111
    Stefff111 Member Posts: 1
    #16
    Zhar said:

    Adding another name to the list..
    May 2008: Symptoms double vision, headaches, cognitive fog.
    February 2009 Diagnosis upon biopsy: Chondrosarcoma of petrous bone (skull base, in cavernous sinus right side impinging on abducens-6th optic nerve, carotid artery & sphenoid sinus). Partial removal Feb. 17 via transsphenoidal endoscopic approach, still healing - sinus infection yay! and awaiting stereotactic radiotherapy commencing April for 7 weeks.
    Would love to hear from survivors of similar, as it is true there is not much literature on the subject. (My oncologist says that about 5-10 people are seen per year at Princess Margaret Hospital in Toronto, ON)

    Wondering about other symptoms -
    I had an MRI in July of 2009 which revealed a tumor in the petrous bone. I have a history of thyroid cancer; doctors don't seem to know what to make of it --is it thyroid mets or is it chondrosarcoma? (According to medical field with of course various wild opinions in between) One doc said my symptoms did not match what the tumor is. I felt like he was saying that I was making it all up. The tumor is in right side of petrous bone and all of my symptoms---waves of dizziness, tingling in left extremitites, tingling in face and tongue, nausea, inability to walk with steadiness, etc. All is left sided. This comes and goes and varies in intensity. Supposedly the tumor is NOT pressing on my cranial nerves but I don't see how it isn't. I've been since July trying to get a doctor to do something....in the mean time I'm home from work on short-term diability which runs out soon. Very frustrating and depressing!!! I feel absolutely helpless. Just wondering if my symptoms are similar to yours and what can I do?
  • sdsimpson
    sdsimpson Member Posts: 2
    #17
    Chondrasarcoma
    I was originally diagnosed with chondrasarcoma 17 years ago. My cancer was in my femur, which led to an amputation 5 years ago. The cancer has come back twice since then, both times in my lung. Every time it comes back, i have it plucked out!
  • Ceperley
    Ceperley Member Posts: 3
    #18
    Stefff111 said:

    Wondering about other symptoms -
    I had an MRI in July of 2009 which revealed a tumor in the petrous bone. I have a history of thyroid cancer; doctors don't seem to know what to make of it --is it thyroid mets or is it chondrosarcoma? (According to medical field with of course various wild opinions in between) One doc said my symptoms did not match what the tumor is. I felt like he was saying that I was making it all up. The tumor is in right side of petrous bone and all of my symptoms---waves of dizziness, tingling in left extremitites, tingling in face and tongue, nausea, inability to walk with steadiness, etc. All is left sided. This comes and goes and varies in intensity. Supposedly the tumor is NOT pressing on my cranial nerves but I don't see how it isn't. I've been since July trying to get a doctor to do something....in the mean time I'm home from work on short-term diability which runs out soon. Very frustrating and depressing!!! I feel absolutely helpless. Just wondering if my symptoms are similar to yours and what can I do?

    Skull Base Chondrosarcoma - life is great, everydays a blessing
    Hi Stefff111,

    I was diagnosed with a skull base chondrosarcoma on the petrous bone, one the right. As you all my symptons were on the left. The surgeon said impossible but when the tumor was removed my burning gums and facial paralysis and other left side symptons stopped. You need to have it removed and the best option is open surgery not endoscopic as it will not do a good enough job. Wish you well
  • Ceperley
    Ceperley Member Posts: 3
    #19
    jilloz said:

    Hi there
    Diag skull base tumour, oct 2004 , surgery dec 2004 partial removal chondrosarcoma, now advised proton beam in usa around january 2006, because of blurred eye.

    would like to hear from anyone that has experienced

    jillian

    Hi Jilloz,
    How did the
    Hi Jilloz,

    How did the proton therapy go for you? I will be going for the same treatment in about 30 days.

    t
  • Unknown
    Unknown
    #20
    This comment has been removed by the Moderator
  • Hector10
    Hector10 Member Posts: 5
    #21
    Ceperley said:

    Skull Base Chondrosarcoma - life is great, everydays a blessing
    Hi Stefff111,

    I was diagnosed with a skull base chondrosarcoma on the petrous bone, one the right. As you all my symptons were on the left. The surgeon said impossible but when the tumor was removed my burning gums and facial paralysis and other left side symptons stopped. You need to have it removed and the best option is open surgery not endoscopic as it will not do a good enough job. Wish you well

    New Member
    I am new to this site, but have belonged to others for a while. This is the first site that I have ever read of or heard of another person who had a skull based Chondrosarcoma. It is nice not to be alone. How are you doing, where are you?

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