Sharon Berlan

Information Journal Guestbook

I had enjoyed generally good health until February of 2003, when I felt a lump in my throat. I thought it would "go away" but after a few days I was concerned enough to go to the Dr and was referred to an ENT. The diagnosis was that I needed an Adenoidectomy. I got a (very expensive) 2nd opinion which agreed and the procedure was performed as an outpatient in a hospital. How I wish that were truly the problem!

The lump in my throat persisted and over the next year I had continued breathing and sinus issues. At a certain point I could barely breathe at all out of my right nostril. After a test was done the ENT said I needed a very important emergency biopsy and as I recall said it was my "adenoids".The Dr was nervous...it all seemed strange since my adenoids had been taken OUT but I went for a different 2nd opinion. The new Dr was a surgeon who immediately suspected Clival Chordoma. Many Drs have not even heard of it. This is an extremely rare skull based tumor and the information on the internet was quite scary. This website/foundation did not exist. He sent me to see a Neurosurgeon and now I was definitely afraid. A Neurosurgeon??!?!?! Ultimately all agreed that they should handle the surgery and not do a biopsy as that might affect the ability to remove any tumor in one entire piece. So I now had new Drs. I learned then that it is necessary to sometimes change Drs and not worry about hurting anyone's feelings. Your life is at stake!

It seems this is a common route with Chordoma as it is often missed and/or misdiagnosed leading to more complications fighting this disease.

I had my first surgery (not counting the adenoidectomy which was probably unnecessary) in February 2004. It was endoscopic (through the nose) and minimally invasive. This was the first time I was ever overnight in a hospital. It went well and I fairly quickly returned to work. The Drs felt they were successful. However follow up MRI showed "residue" so 2nd procedure was done to retrieve that. In the end I had 3 of the similar type surgeries with that team.

After that period and still working/traveling with a high pressure career, I got some additional opinions from surgeons and oncologists. MRI showed we were not done. This is a very tenacious type of tumor! It was decided there was still a chance to "GET" this with an aggressive "open" surgery. This meant another team of surgeons at a different hospital. So that was scheduled and I wont even describe what they were going to do as it sounds like Frankenstein. But I was being very brave and really had no choice. In the end I awoke to find they had themselves gone minimally invasive though very aggressively and I had much more recovery. But one would still never know to look at me that I had had now 4 major surgeries on my head! Follow up MRIs always showed residue or leftover tumor, unfortunately.

The 5th surgery was through my mouth/palette and that left me with difficulty swallowing, speaking which I still have. I recovered enough to return again to work and hoped that was it. Not to be! The 6th surgery was an all out last ditch effort that went through the right side of my head. This has been by far the most serious and longest recovery of all. I was advised there were serious probabilities of permanent damage from stroke, spinal fluid leaks and paralysis. But there was really no choice. I dont hear anymore out of that ear and my right eye/side of face has cranial nerve damage among other disabilities and limitations that occurred. But overall I am doing well considering the situation. I am very lucky.

I had 8 weeks of Proton Radiation Therapy in Boston last October/November 2007. So it is one year plus since and I am finally able to walk around a bit. I continue to have procedures and to be monitored. Recently a new tumor was discovered on my cervical (neck) spine so the disease has spread which is unusual and obviously not good. I am dealing with it with various drs and will need surgery again in the future.

We all wish there was a proven chemotherapy but right now not enough research has been done and the attempts seem to be not working well except in sporadic cases. Can you believe I WISH for Chemotherapy??!

Through these years I have often received important information from other patients and then shared with others myself. The communication has been a savior and a comfort in every way possible. I am a different person now, definitely than I would have been without these experiences. I am so grateful for the life I have and can enjoy now. I got married this year after having to cancel last year. That is a blessing! I appreciate everything, much more than I did before such as breathing, walking, swallowing, talking!! I try to make the most of every day.

I have met many fellow patients and hope to meet more. We are in this together!!

*******UPDATE: On 4/20/09 I was diagnosed with a new tumor on my cervical spine/neck. I had IGRT radiation therapy at Memorial Sloan Kettering on 6/30. 1 day of a full 8 weeks worth. It is a new treatment. On 12/10 I got the results which were a "great response"..the tumor did not grow, shrunk and "pulled away from the spine". This will make surgery easier though its still "a big one". In some cases they would not even do surgery, but it my case we will on Feb 12th 2010. If necessary, they can also do additional radiation to the site during surgery, which very few facilities can. So its good news, although having another surgery will certainly be no fun. All my best, Sharon
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UPDATE 3/3/10: Surgery was canceled due to FANTASTIC response to this single dose high fraction IGRT radiation. It worked so well on 3 MRIS that they do not see the "need" to do surgery at this time. They feel the tumor is "necrotic" or dead 95%. This is a possible new paradigm for treatment in cases where it can apply...avoiding surgery or making surgery much easier with less complications.. I will be having future MRIs on skull and then full spine in 2 then 4 mos.
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UPDATE 7/20/10: All recent MRI's have been GOOD with no new tumors and no growth on the old ones. I am very lucky and happy that so far I have avoided further surgery. I have a fantastic team(s) of Drs here in NY and communciate with newly diagnosed patients and others as much as possible. We all share and it helps since there is so little information or inaccurate information out there. Thanks to everyone for their support, in every way!!

The Chordoma Foundation is the only organization dedicated to finding a cure for this rare "orphan" disease. Even though I live in NYC with top medical options available, I was unsuccessful in getting ahead of this aggressive cancer. I am very hopeful that The CF will raise the funds necessary to make progress. The answer IS OUT THERE, unfortunately it takes money. In addition the CF helps patients with necessary information that is often difficult to come by, and facilitates sharing by patients which is so rewarding in many ways. I encourage friends and family to donate when they can. Any amount will help this cause.