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Author Topic: scared of permanent symphtoms of radio surgery for my tumor  (Read 367 times)

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Offline hasenfuss22

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scared of permanent symphtoms of radio surgery for my tumor
« on: January 27, 2014, 12:13:18 AM »
I have been posted in the past about my brain tumor behind my optic nerve. It was diagnosed as a low grad meningioma ( slow growing) This is benign tumor but still worrysome to me. I had surgery a months ago and he could take out only 10% becaue the location is risky and would damage to much. The next step is radiation. It's a specific kind of radiation call
radio surgery ( but they don't open me up again).
I went to the oncologist and this is what he wrote up for me :

Stereotaxic radio surgery is a noninvasive neurosurgical treatment based on the principle of stereotaxic radio surgery. It is
an image guided robotic driven delivery of a high dose of focal radiation. However it doesn't evaporate the tumor.
Stereotaxic radio surgery has a success rate of 85-90% in controlling the growth of this tumor. The risk including but not limited to facial numbness (10-14%), dryness of the eye and occasionally with tongue numbness and taste dysfunction (2%). There is a 4-6% chance of double vision. The risk of blindness is low estimated to be 4%. The stroke risk is small but not zero. Unfortunatley the side effects of stereotaxic radio surgery are commonly long lasting and potentially permanent. . The success rate of controlling this tumor is about 85%, the lenght of surveillance is about 10 years. In that sense open surgery is more definitive and potentially can "be forgettable".


The doctors English isn't the best but I just wanted to write it the way he wrote it. He said after 5 years we know if the treatment is a success and than there is another 5 year surveillance with MRI to see if the tumor stays the same or is growing. He told me that if I do nothing, all these side effects will come eventually anyway.
I am very scared of numbness of the face ( the whole face he said ) and blindness  and double vision.
Am I freaking out too much ?? Please tell me what you guys think.
The reaccurance rate of the tumor is 11%( at least I have a slow growing tumor).

I am on another support group for my specific tumor. I am came accross than there is a link between meningioma and breast cancer. This tumor is more common in women. Another thing to worry about. He said don't take the pill ( which I luckely never took). Now i have to be scared of breast cancer too ? I just read the title about the link and didn't want to read further and for sure didn't want to google it.
Please tell me your opinion since I am so scared.
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extreme fear of cancer

Offline hasenfuss22

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Re: scared of permanent symphtoms of radio surgery for my tumor
« Reply #1 on: January 27, 2014, 01:12:29 AM »
I know this must scare a few people but I would really appreciate an opinion.
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extreme fear of cancer

Offline IAMHEALTHY

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Re: scared of permanent symphtoms of radio surgery for my tumor
« Reply #2 on: February 01, 2014, 01:53:01 AM »
I wish the best for you. You can also try supplementing lugol's iodine or nascient iodine, provided you aren't allergic to it and take the correct dosage. I've read people having good success with it for shrinking growths like ganglion cysts, tumors, cancer prevention, oh and I forgot it is suppose to protect you from radiation

again I'm just thowing that out, the plan sounds like it can be successful, however I agree I'd much rather have surgery than deal with radiation and other problems it can cause, but I'll keep you in my prayers and being that it's a slow growing tumor makes the prospect even better
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Offline Brick5711

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Re: scared of permanent symphtoms of radio surgery for my tumor
« Reply #3 on: February 01, 2014, 07:45:22 AM »
As with any procedure, there are always risks. For example, a colonoscopy can cause punctures in the stomach. I would as your doctor how often does he see the side effects, are they that bad. Its like reading the side effects of medication. It could happen but more often than not, it doesnt.
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Offline marc

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Re: scared of permanent symphtoms of radio surgery for my tumor
« Reply #4 on: February 01, 2014, 08:29:17 AM »
Anyone would be scared. Maybe it would pay to get a second opinion at a world
class medical center, such as the Mayo Clinic, Johns Hopkins, etc. I had a basal cell
carcinoma removed 5 years ago. My chance of getting cancer somewhere else
is higher than someone who never had any cancer.
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Never, Never, Never, give up.

Offline NewMommyTX

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Re: scared of permanent symphtoms of radio surgery for my tumor
« Reply #5 on: February 02, 2014, 01:31:45 AM »
Don't take what pill ? Birth control ??
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