I had my Pituitary Tumor removed four years ago. They weren't able to remove all of it due to it being close to optic nerves. I have been monitored yearly. This check up they found that it has started to grow. I am starting six weeks of radiation next week. Has anyone had experience with radiation? Side effects?
I am a fellow pituitary patient and I have a lot of questions- I mean this to help you. I find it rather strange post op that you say pit tumor and not the type of tumor - as the type is the most important factor in outcome and treatment.
I hope you are at a pituitary center with a pituitary endo aka neuro-endo. I hope you get copies of all your records from pathology from labs to MRIs etc as it really helps you know what is REALLY going on.
It sounds like, from the description, that you are going for cyber-knife? The docs are going to down play the side effects from radiation but sadly, our tumors are very deep and the beam has to pass through a lot of tissue - and it effects all that tissue (unless it is the newest type, proton beam radiation) and it can vary by the person, the amount of radiation, the location and size of tumor - so some people get a few to none, some people get a lot of side effects.
It also can take 6 months to 5 years to work.
Have you researched the different types of radiation - the pros and cons, and what would be best in your case? The docs tend to push only what they have, not always what is best for you.
Thank you for responding. I have a macro adenoma. Originally I had the transphenoidal resection four years ago. Currently the tumor is 2.6x2.3x3.1 centimeters, it is going into the Cavernous Sinus putting pressure on the right temporal lobe. I am having six weeks of Intensity modulated radiation therapy (IMRT). I am not at a Pituitary Center, I am going to Duke Cancer Center, I honestly didn't know there were Pituitary Centers.
Everything I have researched I have been told I am not a candidate due to the position of the tumor.
Macro is about the size - not the nature - but given the size it is likely but not for sure a non-secreting tumor as those tend to be large - but others get large too.
Anything in the cavernous sinus is inoperable... There are pituitary centers and it really makes a difference! Radiation has a bit of radiation leakage - and so the positioning of the beam makes a huge difference - so you want people experienced in pituitary lesions doing it.
I would get records and send out to a PITUITARY center. You are at a good if not great place - but you need a rather specialized place IMHO. At least I would try - and look in the health pages for ideas near you.
It really pays to be an on-the ball patient with all your labs. pathology etc - that way you know if you are getting the best treatment. Sadly, I did not at first and I know people that got bad surgeries and other things that put them in bad ways - the pituitary is vital for life and it is not well understood.
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