Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Ok. So the roller coaster continues.
Trying to understand how my Doctors can make such leading statements as "Gamma Knife" is the treatment for my remaining Pit Tumor reminants.
I have tumor left around carrotid artery and breached into my left cavernous sinus.
Met with the Radiation Oncologist Dr. Brierley at Princess Margaret Cancer Care Center in Toronto (5th Largest Cancer Care Center in the World). So, I'm no longer scheduled for the one shot, high dose of Gamma Knife radiation. The Tumor Board reviewed and decided that my tumor in my cavernous sinus was 'too large' for Gamma Knife needle precision, and they want to go with older Sterostatic EMRT.
This is 5 days a week, 5 weeks in total of short larger area radiation bursts. Gamma knife has been talked as the standard on here, so has anyone ever had treatment with older Sterostatic EMRT, which is I am assured lightyears more advanced than what it used to be just a decade ago.
Thoughts, comments would be appreciated. :0)
Trying to understand how my Doctors can make such leading statements as "Gamma Knife" is the treatment for my remaining Pit Tumor reminants.
I have tumor left around carrotid artery and breached into my left cavernous sinus.
Met with the Radiation Oncologist Dr. Brierley at Princess Margaret Cancer Care Center in Toronto (5th Largest Cancer Care Center in the World). So, I'm no longer scheduled for the one shot, high dose of Gamma Knife radiation. The Tumor Board reviewed and decided that my tumor in my cavernous sinus was 'too large' for Gamma Knife needle precision, and they want to go with older Sterostatic EMRT.
This is 5 days a week, 5 weeks in total of short larger area radiation bursts. Gamma knife has been talked as the standard on here, so has anyone ever had treatment with older Sterostatic EMRT, which is I am assured lightyears more advanced than what it used to be just a decade ago.
Thoughts, comments would be appreciated. :0)
Yes, I had radiation therapy for 5 days a week but for a total of 30 days.
There was still quite a bit of tumor remaining after a few ops so they said gamma knife was only effective when tumor was smaller.
It's a bit of a pain getting there every day and you'll feel pretty washed out, bit sick but that all passes after a few weeks.
They can direct the radiation pretty well now with newer machines as they have onboard MRI they use to accurately line it up every time you get on.
The doctor said they are much more advanced with radiotherapy and know more accurately the kind of doses required so as not to damage surrounding bits.
I wouldn't worry about it - if you look online they really are not that sure gamma knife is really any more effective at treating pit tumors than general radiation. At least with general radiation they've had a few more years practice.
I did a fair bit of googling and in my case the benefits far far outweighed the risks because it also stops the little blighter growing again in 99% of cases.
Doc said since I was below 40 and it was pretty big and fast growing this was best way to 'sort of' guarantee no more ops.
So I think old-fashioned radiotherapy still has a part to play in controlling growth hormone and further tumor growth in younger people.
You will lose hormone function, which can be sorted with medication and if you want children - I'd get some sperm banked just in case.
Thank you for your reply. I really appreciate it. It is comforting to me knowing that you have done so well with this. I have my initial frame fitting and dental impressions this Wednesday.
Did you get a buzz cut for your hair before the fitting. They recomend if I need to get my hair cut, have it done now. I then have my MRI and CT baselines. I am anxious to get this started.
Thank you again,
Wes
The actual process of radiotherapy isn't that bad, it just makes you feel pretty run down so don't plan anything while you're going through it or about a fortnight after it.
You will lose a patches of hair wherever the beam is directed. I lost three patches, one at the front and two at the side. The two at the side have grown back but the front one is growing back but slowly.