Cancer Survivors Network

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.

Hi there,

Glad to have found this community. I've recently been diagnosed with chondrosarcoma in my skull base as well. The neurosurgeon believes it's that, but has not confirm it until they get a biopsy and due to the location of the tumour, it most likely will be done during surgery.

Right now, since i'm mildly affected (only right eye vision giving me double vision and blurry-ness) it is suggested that I wait for a month or so until I get another mri to see the progress of the tumour.

The doctor told me there are high risks for the surgery giving me a stroke or bleeding because of the location of the tumour, it's located right in the skull base, centre of my brain, near the brain stem.

This case seems very rare, I hope those who are in similar situation can come together for support and sharing information to help one another who are facing it be more at ease.

Glad to see that I'm not the only one. I'm only 23 years old and it seems that this tumour has been there for several years, growing very slowly.

Hope all is well with you :)

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

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?

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)

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?

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

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?

Great to hear about others with this rare tumor. I was diagnosed with a grade 1 skull base chondrosarcoma in Sept 2008. I had been having headaches and double vision. Turns out the tumor was displacing my brain stem and growing into my ear and cavernous sinus, where the 6th (eye) nerve was affected. The good doctors at Vanderbilt in Nashville took the tumor out with 2 extensive craneotomies in a 3 month span. The doctors rated these surgeries a 10 on a scale of 1 to 10 for difficulty. This left me deaf in one ear and drastically more cross-eyed than before. Really though, as big and grotesque as the incisions were on my head, they healed up nicely and are not that noticeable under my hair. After that, the oncologist told me that proton radiation was the best option, but the only places were Loma Linda in California and in Boston. I chose standard radiation closer to home at Vanderbilt. Over time the radiation will effect the thyroid function. But up till now I'm still tumor free. I finally had eye surgery to correct my eyesight to a much more manageable situation. I do most everything as normal now. I drive, work (office) yard chores, etc. I just have to be careful. Just walking can sometimes be a challenge with a balance problem I have had since the surgeries. I know people think I'm drunk sometimes. (Fingers crossed)

hi there,

so happy to find that i'm not the only one diagnosed with chondrosarcoma on my skull base located near the brain stem.

i've yet to have the surgery seeing that there are high risks of getting a stroke or paralysis, my doc advised me not to since i'm mildly affected (it's pressing on the 3rd cranial nerve, affecting my right eye, i get headaches and double vision as well)

I will have to wait 4-6 weeks before I get another MRI to see the progress of the tumour. I plan to check out a chinese doctor, hoping herbal medicine will help the tumour shrink, since we never know what will happen, got to try out all options.

I'm 23 year old female, and seem to be having a normal life until this diagnosis hit. it is a very rare situation, but glad to know i'm not the only one.

hope all is well with you.

Hello there! Wow- your story was so similar to mine that I had to comment. I was diagnosed with a skull base Chrondrosarcoma tumor at the age of 21. I experienced awful headaches and started to have double vision on the right. I had also experienced two grand mal seizures prior to the diagnosis. (I have since had four seizures which are attributed to scar tissue). My eye sort of "stuck" when I would look to the right. I went through three surgeries (one was a 2-day surgery) and then proton beam radiation in Boston. I lost my hearing in my right ear. People would never know what I went through if I didn't share my story.

The hardest part was being so young and I get sad and feel like I have missed out on stuff. It is so important to form a support group for yourself with people who really understand what you are going through. There are so many resources out there today.

Take care and I hope to read more about your story.

Hi Jilloz,

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

t

Hi there,

I've been recently admitted to St. Michael's Hospital in Toronto and was diagnosed with chondrosarcoma. It's located on my skull base in the centre of my brain, close to the brain stem. I believe it's called the clivus or something.

I have yet to do surgery since it is mildly affecting me. Only my right eye is being weird, I get double vision when i look far left or up or down. It is believed that the 3rd cranial nerve is being pressed on by the tumour.

Right now, Dr. Spears told me to wait and monitor the tumour since the surgery had high risks... about 1 in 4 or 1 in 5 chance of getting a stroke and being paralysed or in worse condition then before surgery. Within the next month of so I will have to go in and get an MRI check again to see the progress of the tumour.

I would like to know if anyone ever has had the surgery for related skull base tumour and how it was for you, the prognosis and so on.

I've just quietly celebrated my 10th year of post-radiation for Chondrosarcoma in Right Cavernous Sinus so my tumor is not in the same location as yours but I had similar symptoms ( nasty headaches and diplopia ) which prompted me to seek medical attention in the first place.

You are female in your twenties and I am male in my thirties back in 2000 when my tumor was diagnosed.

Sounds like you have been well informed re: surgery and its risks (stroke, blindness, seizures, death).

I had 2 crainiotomies within 5 months and then proton-beam radiation. Radiation has its side effects and long-term effects and for me I was told that because the radiation went through my pituitary gland it would affect hormones resulting in thyroid issues as well as being able to father children. So far my annual bloodwork is good but I have been made aware of symptoms to look out for.

Of course I have no idea of your treatment plan so the above may not apply to you.

In many ways I don't dwell much on my illness anymore. I just wanted to get on with my life ! My tumor is still visible on subsequent MRI's but it has not grown. I have no headaches. Double vision has never returned to normal, but I have glasses with prisms that do a fine job.

My suggestion is that you don't be afraid to ask the doctors questions, no matter how simple or insignificant they may seem. Write stuff down and have a family member or friend attend appointments to ask questions or just support you.

Hi rejoicejennt,
Had surgery at Tor. Western in 1998. For skull base chondrosarcoma. Was on meds for seizures for a while, off them now. Was advised to have Proton Bean rad. in Boston that would prolong my life by 20 yrs. Tumor is still contained. With scheduled mri every 2 years. Next app. Feb.2012.
Prognosis is good. Some side effects from surgery and rad. but with the support that I have I am able to live an almost normal live.
Hope this helps. Contact me if you wish.
Hope you are doing fine.

Hi rejoicejennt,
Had surgery at Tor. Western in 1998. For skull base chondrosarcoma. Was on meds for seizures for a while, off them now. Was advised to have Proton Bean rad. in Boston that would prolong my life by 20 yrs. Tumor is still contained. With scheduled mri every 2 years. Next app. Feb.2012.
Prognosis is good. Some side effects from surgery and rad. but with the support that I have I am able to live an almost normal live.
Hope this helps. Contact me if you wish.
Hope you are doing fine.

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.

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?

Hi, I was diagnose with chondrosarcoma an July/2011 I had surgery in sep/2011 and had the tumor taken out along with ane of my ribs and cuarrently going thru radiation treatment which is being really hard on me. so I just want to know if you got any radiation treatment after your surgery and if you did what are the side effects?? I'm looking forwared to hear from you
thank you.