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Author Topic: worried about the growth behind my optic nerve ( need another MRI)  (Read 919 times)

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Offline hasenfuss22

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I posted before about my vision being bad in one eye. I went to the eye doctor and he saw swelling behind my optic nerve. They send me to an MRI to rule out any masses. They found liquid behind the optic nerve which they believed to be "pseudo tumor". Not a a cancer tumor but a collection of spinal fluid they thought. I didn't fit their criteria for pseudo tumor since overweight people have it and it's usually in 2 eyes and people have headaches with it. All this I didn't have. I saw the neurologist and he told me since I didn't fit their critiria he will talk to the eyedoctor and a neuro sergeant was also looking at the MRI again. Well today I got a phone call which really scared me. He told me that now they did see a growth behind the optic nerve. Very very small but the neurosurgent saw it. Of course I asked him right away if it's cancer. He said it doesn't look at all like cancer. He thinks it looks like a benign growth called menigioma and the watery swelling might be from that. He said I need an MRI with contrast to see the growth better. A growht needs to be removed of course with surgery since it's pressing on the optic nerve and cause loss of vision. I asked him a gain and again if it's cancer and he said he is not so concerned about that since it doesn't look like that on the MRI. I asked him again what is the major concern and he said vision loss if untreated. I still had cancer on my mind and I asked him how sure he is that it's not cancer percentigewise. His answer was you can't put a number on this because nothing is ever for sure. What do you guys think after this remark. He is not concerned about cancer but you can't put a number on it. Not sure what to think of it. Maybe the contrast MRI will show cancer now. sooooooo scared
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extreme fear of cancer

Offline hasenfuss22

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #1 on: December 05, 2013, 12:35:51 AM »
Since nobody is responding I take this as a bad sign. :(((( I am sooo scared .
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extreme fear of cancer

Offline japheree

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #2 on: December 05, 2013, 05:35:01 AM »
His answer was you can't put a number on this because nothing is ever for sure. What do you guys think after this remark. He is not concerned about cancer but you can't put a number on it.

Good doctors do not speak in subtexts. Good doctors tell you the truth as plainly as they possibly can. In this case your Doctor is saying that in their experience it doesn't look cancerous but it would be foolish of them to ever rule out anything when there is a slight chance they are wrong. That and it would be very hard to put a meaningful statistic on the number of people with what looks to be a non cancerous growth that then turns out to be cancer. Medical statistics are complex and involved and I think they were right to not get you going down that route anyway.

I have recently been told a similar thing about my issues. I am taking it as a face value 'very unlikely to be wrong' sort of thing.
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Offline Brick5711

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #3 on: December 05, 2013, 06:28:44 AM »
No doctor will ever tell you one hundred percent that it is not cancer. You can't truly know that without biopsy. It is like any other medical test. Een a gender ultrasound. They can see a boy or girl part but they will never ever tell you one hundred percent one way or another. When I had a polyp removed the doctor said I think it is nothing but it could be pre-cancerous. Doctors do see this stuff a lot though and are pretty good at determining wether or not it is cancer. I really wouldn't worry about it too much. But of course that is easier said than done.
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Offline marc

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #4 on: December 05, 2013, 08:15:50 AM »
I have found that over the many visits I have had to various doctors, that most can
tell right away if something appears to be cancer, but can never say for sure until all
test results are in.
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Never, Never, Never, give up.

Offline greend

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #5 on: December 05, 2013, 08:42:06 AM »
A good friend of mine had the exact symptoms you have described and she too had a menigioma.  She had the surgery, they removed it and she has perfect vision now.  Menigiomas are far more common than cancer.  She was told the likelihood of it being cancer was very low and it turned out to be benign, just as they suspected.

You will be fine.
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Offline sydneymom

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #6 on: December 05, 2013, 12:30:11 PM »
Hi. I rarely post on here these days but I do still read some posts and I wanted to respond to you. In July I was diagnosed with a meningioma after an MRI because I was having an increase in ocular migraines. My meningioma is in the olfactory groove and supposedly is not affecting my vision (lucky enough to have a meningioma and migraines separately). Turns out the tumor has been there at least five years as it was missed in an MRI without contrast in 2008.

I was in a total panic. But I saw two neurosurgeons who told me based on its rate of growth (about 4mm in five years) it will be ten years before it is an issue to me. I have to have MRIs once a year to monitor growth and of course if I have any symptoms I have to go back. I wlll tell you I wonder if some of what I assume is anxiety (off balance, weird eye symptoms, fatigue) are related but they say no. Mine right now is not touching the optic nerve.

I will tell you that they say they can be removed endoscopically through the nose. I dont know if that is comforting. I struggle to accept mine. There are times I wish it could be removed because it does not belong there. But I try to carry on. I will say that having something real has made my anxiety a little easier to manage somehow.

Hope this helps in some way. Good luck.
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Offline hasenfuss22

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #7 on: December 05, 2013, 02:29:54 PM »
I just don't understand why they didn't do an MRI with contrast in the first place. Can they tell from the contrast if it's cancer ? How long is such a surgery and how long won't I be able to work? Will I have scars. Shared Head....etc?? Welll mostly I am still scared about cancer.
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extreme fear of cancer

Offline sydneymom

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #8 on: December 05, 2013, 03:37:00 PM »
They knew mine was benign just from the MRI. They say they are over 90percent benign. I dont know much about the surgery but they also sometimes do radiation instead to stop it. I guess it depends on the individual situation. Many are just watched and monitored if they are not causing symptoms. You need to speak to a neurosurgeon after the MRI but if cancer if your big fear I think you dont need to worry.
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Offline hasenfuss22

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #9 on: December 05, 2013, 03:56:11 PM »
What do you mean by 90 percent  ? You mean over 90% of tumors they find are benign? Did your doctor tell you that ? I am more scared of cancer than blindness. I figure cancer is mostly deadly and the other one can be fixed.
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extreme fear of cancer

Offline hamsterswheel

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #10 on: December 05, 2013, 04:50:30 PM »
I understand why you are feeling this way. I don't have the same growth you have but I do have a growth on my liver that was picked up incidentally.

Now here is what the liver specialist told me before the MRI when it was picked up by ultrasound:

He said he did not think it was sinister but wanted an MRI with contrast to get a close look. After the MRI he told me he is pretty certain it's benign. He told me he knows what cancer looks like and it does not look like that.

I then had a follow up 6 months later and all was exactly the same.

Can I ask you what advise would you say to me about my conversation with the specialist on whether it wa cancer or not?
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Offline hasenfuss22

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #11 on: December 05, 2013, 04:59:06 PM »
Not sure what to advice since I  am in the same boat. At least you dad your MRI with contrast and I didn't have that yet. I e -mailed my doctor and asked him again why he is doing thee MRI with contrast. I was so nervous on the phone with him yesterday. I did remember that he told me he is most worried about loss of vision and that's why I might need surgery. I can tell you later what he is responding.
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extreme fear of cancer

Offline sydneymom

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #12 on: December 05, 2013, 05:12:00 PM »
Yes. Most meningiomas are benign. They are most often found incidentally on an MRI done for another Reason like mine. They use the dye because it enhances the tumor better and they can see it more clearly. The dye is not a big deal.
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Offline hasenfuss22

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #13 on: December 05, 2013, 10:21:22 PM »
This is an e mail from my doctor when I wrote him that I am worried about cancer and why does he do another MRI and this time with IV contrast.

"The MRI is being done because giving the IV contrast can sometimes give some information about what the growth is and may give more detail about it's borders. It's likeley to be a benign growth called a meningioma. That's the appearance it has on the 1st MRI. Doesn't have characteristics that would suggest cancer. If it ever comes to surgery, you would have to ask the surgeon about details like recovery time."

Please let me know what you guys think after reading his e-mail. So it sounds to me he wants to see if it's cancer or not ??? Sooooo scared.
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extreme fear of cancer

Offline hasenfuss22

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Re: worried about the growth behind my optic nerve ( need another MRI)
« Reply #14 on: December 05, 2013, 11:25:41 PM »
anybody ?
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