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.
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.
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.
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 :)
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.
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
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?
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?
Hello fellow cancer-mates,
I was diagnosed in 2006 with skull base chondrosarcoma, proton beam in MA in the fall of 2007. Here it is 2012 and the tumor has not budged. The proton killed it.
Proton is the best treatment, excision was not an option for me. Liebsch (sp?) at MGA is the master.
I saw your note above. I was recently diagnosed with a chondrosarcoma of the skull base. It was mostly removed but the doctors have suggested proton beam therapy to continue the treatment and to make sure it doesn't come back. Can you share your experiences with me? Did you suffer any side effects? I have also spoken with Dr. Liebsch and was very impressed by him. Is there a reason you chose proton therapy over IMRT? I am only 30 so it's scary to make these decisions that will effect me long term.
Thanks for any insight you can provide.
I just finished proton radiation for my tumor on May 8, 2012. I had a partial resection by the surgeons on Dec 20. I had a few side ffects from the radiation therapy but they were not too bad. My tumor was wrapped around my brain stem, several nerves and my carotid artery on my right side. My surgeon, Joseph Watson, Fairfax, VA, said that the only therapy to consider is proton. My therapy was done by Dr. Allan Thornton at the Hampton University Proton Therapy Institiute.
I just wanted to share my story with you since it seemed familiar with yours.
I am 49 years old and was diagnosed in February that I had Chondrosarcoma of the skull base. It is a low grade stage one. I had surgery on March 19th to remove about 85% of the tumor.
I will be going to Boston MA in two weeks for Proton Therapy with Dr. Liebsch as my Radiation Oncologist. I have to have seven weeks of radiation. I was strongly encouraged that this treatment will arrest this tumor from spreading and assured that my life expectancy will be very long.
As with any surgery or radiation treatment, there are always risks involved, and possible side effects to be had. But I feel for me that I am willing to take a leap of faith, and believe that this is going be the best option for me.
I just got married seven months ago, so I am looking forward to putting this behind me so I can go on with being a newlywed.
Have you made a decision on what you are going to do yet?
Couldn't sleep because today has been difficult due to my vision. Look who I get encouragement from yet again
God is good.
Hi there, can you tell me what kind of symptoms you had in the beginning? I have been telling the neurologist I have head pains in the right
side of the back of my head and do not seem to be getting anywhere with her. She has done 2 MRI's and found unspecified dots on my brain.
The pain is bad and she put me on Lyrica and told me I was showing early symptoms of MS. I am trying to get am appointment with a new neurologist
specializing in MS. I get dizzy and feel sick a lot of times. I feel it is in my head or lymph nodes. I had thyroid cancer in 2006 and had the total
thyroidectomy and I131 radiation. Just curious to know how you felt.
I hope you are getting good care and you get better.
God Bless 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)
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.
How did the proton therapy go for you? I will be going for the same treatment in about 30 days.
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.
I just joined this site, 12 years post op as I was just browsing for any new information. October 8,2001 I had a right craniotomy for my skull based chondrosarcoma. My surgery was at Hopkins as I live in Maryland and I followed up with Proton Beam Radiation at Loma Linda Medical Center in Ca.
Until now I have never met anybody who has been diagnosed with this tumor. I know we are a small group but it is nice to know you are not alone. My surgeon did achieve 100% resection and from day one my MRI'S have been clean. I too had Proton Radiation and have had cognitive side effects from it to the point that I am on disability. My Thyroid has just started acting up and I am now on Synthroid for it and Testosterone for low levels.
I thought I'd put in my experiences. I was 25 when I was diagnosed with a grade 1 skull-based chondrosarcoma, and had a craniotomy behind my right ear about 5 months later. I was diagnosed after some dizziness and chronic headaches. About 90% of the tumor was removed. I had a subsequent surgery to repair a CSF leak that had developed, which, from what I remember, was the worst thing I've ever felt. The second surgery was 3 days later I believe. My memory goes blank in the time in between. I was not advised to do proton beam thereapy at this stage.
Apart from the CSF thing, the surgery was excellent. I can give immense credit to Dr. Robert Spetzler and the Barrow neurological institute in Phoenix. They were extraordinary. It's been 7 months, and I've had several MRI's with no noticeable growth.
The cancer is still there, and I have occasional signature headaches, but it has not done any more damage or metastasized.
It's nice to see that there are a handful of people out there that have the same strange tumor.
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.
How are you? Any updates? I have very similar diagnosis to you .. surgery and radiation in 2009 for me.. slowly getting back to normal now.
Let me know how it's going.. I also have some questions (about symptoms/effects of treatment) to ask other people who have diagnosis of SBC in clivus/petrous bone region.
Pretty sure this message board does not alert if message sent so please send replies to zh4r at hot mail dot com.
Zhar aka Stacey
Hi, I am from another country in Eurasia but with the same problem. Was diagnosted in Feb 12, one morning just cuold not get up, had headaches, disbalanced walking, vomiting. My neurologist gave me some treatment so I could walk again. In Apr'12 went to Germany, Heidelberg University Hospital for operation, had only partial resection, because the tumor surrounded brain stem, very close to me left eye and hearing nerves. Was recommended to heavy ion therapy at the same hospital. Took it in Nov-Dec' 12. Made anothe mri as recommended after 8 weeks and found that the tumor is still there but stable. So, i cannot understand will the tumor stay there forever and we just need to monitor it for growth? Because as my doctor told me it should dissappear after the treatment. yeasterday wrote my doctor but didn't get an answer yet. If you know anything about please tell how it shall work with this tumor? Morally, i am ready to accept the fact that it will live there and i need just to control it and if required take some therapy.
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.
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.
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
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.
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.
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!
In May of 2006 I was diagnosed with a chondrosarcoma which was a 55