Tall Cell thyroid tumor in brain stem

[Portugal-2]

Hi all! Was just diagnosed that my tall cell thyroid has gone to my brain stem. Diagnosed April 2020. Due to husband surgery and Covid my treatment was delayed until January 2021. I received 6 proton treatments to the location. I will be getting a ct scan and pet scan to see if their was a change in April 2021.

Anyone here have their cancer go to their brain stem?? Side note it skipped my lungs and bones and went straight to brain stem area.

Genetically I have BRAF 600V and TERT.

Anyone else out there? Thoughts suggestions.

Read it gives you the most 2 yrs time with added proton treatments??

[SmartGreekGirl]

You are in my prayers. Mine is in my lungs and has not gone to my brain. Also, you might be able to find others who have tall cell by joining thyca.org and getting involved. This is the Thyroid Cancer Survivors Association. I have tall cell as well. Memorial Sloan Kettering in NYC is doing a lot of wonderful work in the tall cell area. Have you talked to them? Also, MD Anderson in Houston, TX has a good thyroid cancer program.

[Portugal-2 in reply to SmartGreekGirl]

Thank you! I actually go to Sloane Kettering. Also have joined the Thyca.org too. Looking for others and answers. Not ready to give up the fight. Good luck to you as well you’re in my thoughts and prayers too!

[SmartGreekGirl in reply to Portugal-2]

Thank you so much.

[kri312]

Can you share your tall cell story with me...I too just found out I had it and am terrified of what is next?

[kri312]

I am so sorry to hear this and I too just found out I had tall cell after a second surgery- I am waiting to meet with MSK to find out next steps and am terrified of the bad news...can you tell me a little about your story? Thinking of you...

[Portugal-2 in reply to kri312]

Sorry it took so long to reply! Husband had Cardiac Arrest after my proton treatment was over. Proton has slowed brain stem tumor. Pet Scan has shown growth activity in left lung and two spots new in right lung. Going to have another pet scan in October 2022. Watch and wait. So your going to MSK also! In good hands there. Glad to hear you got good news. Who are your team of doctors?