Tumor in my head

[fishead]

I am not making a post to seek sympathy!! This post is to ask people what I should ask, at my upcoming "General Neuro" (as in this is not an appointment with my MS-neuro)appointment.

I had an MRI, in December, then follow up one in January. It showed a "tumor" in my head. I HONESTLY am not very worried. More perplexed than ANYTHING. I am a retired/disabled R.N. and should be able to think of good questions. Hoever, with my MS making my congnition so bad, I cannot formulate any good questioins to ask.

PLEASE HELP, by sharing some questions you think would behoove me to ask.

Thank you
LaTish

[onlyairfare]

I think you want to know what kind of tumor it is. "A tumor" is not a diagnosis, and there are many different kinds of tumors. Whether or not it needs treatment, and what kind of treatment might be indicated, would depend on the nature of the tumor.

[Thinkimjob]

You're very calm. Well done.

Is it benign? If it is benign, will it grow? Does it need to come out? Is it pressing on any crucial parts of your brain (yes, joke, it's all fairly crucial)?

If it's not benign, then that's a whole nother story.

[mjan]

Hello my dear,

Not sure if you have done your research, but I would then look for any forums where actual patients and ask them.

Next I would ask this general neuro if you need to see someone who specializes in this type of tumor, such as a neuro surgeon. I would not want any general neuro, but someone who actually treats this.

Bring your own list then let us know how it goes.
Warmly, Jan

[fishead]

onlyair, thinkim, mjan;

Thank you for the input. You have helped me get a coupld of questions written. Hopefully I can now come up with more to ask. I was at an impass on not being able to conjure up any questions.

[CaroleL]

Thinking of you Fishhead!

Good luck with your appointment, let us know how it goes!

HUGS!!!

[jessiesmom]

Brain Tumor

First let me applaud you for remaining so calm in the face of this type of news. You really should go to the discussion board maintained by the American Cancer Society to get suggestions on what to ask during your neurologist visit. Even if the tumor is benign, as we certainly hope it is, folks who have been through this will have a better idea of what to ask than will those with MS. This is the link that is specific to brain tumors:
csn.cancer.org/forum/165

When I had breast cancer I found the board on that portion of the site to be a great source of information and support. Good luck and let us know how things go for you.

[fishead]

Carole, thank you for the hug!

Jessiesmom, thank YOU for the link to the site. I will go there and read up.

[ars320]

A large MS plaque can be read by a radiologist as a mass and sound very scary but end up meaning very little. I was in that situation 4 years ago, with a grapefruit sized mass (affectionately referred to as my goober) on MRI. It ends up the size of the plaque does not mean the MS is advancing more aggressively and needed no treatment other than periodic MRIs to make sure it wasn't enlarging or looking like something else. A good question to ask might be "Could this just be an MS plaque?"

Good luck,
Abby

[fishead]

ars, THANK YOU for your reply. Seems to make a bit of sense!

[onlyairfare]

A different website with lots of brain tumor patients might be more informative, but I have had a brain tumor as well as having MS, so there are a few of us here. Actually you haven't specified if it is a brain tumor, or another location in your head: meningiomas are neoplasms of the brain covering, acoustic neuromas are tumors of the 8th cranial nerve, just for two examples.

I had a meningioma discovered at the same time as my MS was officially diagnosed and I was not at all calm; I was mad as hell, and also scared. Even a "benign" tumor is problematic as that is valuable real estate in there! The website for American Brain Tumor Association has an informative online book "Primer on Brain Tumors" that I found very helpful.

There was another lesion on my MRI that some doctors thought was also a brain tumor, while others believe is "tumifactive MS" - an MS lesion that looks like a brain tumor. ars320 has made a good point about that type of "brain tumor." None of my doctors know what that lesion really is, but it's not growing so we're leaving it alone.

Beyond a general neuro, the specialist for brain tumors and the like is a "neuro-oncologist" - a neurologist who has taken additional fellowship training in tumors of the central nervous system. They do not do surgery, as that falls under the purview of the neurosurgeon, but they will help you in the decision of what treatment is appropriate for you.

It took me a while, and several doctors in several facilities, to get the right treatment plan. Ultimately the meningioma grew quite large, so I had it removed at Mayo Clinic in Minnesota. I am fine now - ten years out and no brain tumor recurrence, and my MS is stable too.

Good luck figuring this all out, and please keep us posted. We all wish you the best!

[poohb3ar]

fishead, sometimes MS is good for somethings, like finding brain tumors that normally would go un noticed.

my first advice is not to over research brain tumors on the internet or anywhere else until you have more info from the drs.

you've already gotten some good advice on what to ask.

if it hadn't been for my MS that was dxd in 2002, my brain tumor would never have been discovered. they don't do MRIs in 'normal' exams.

mine was not related to the MS. it was not likely to be malignant so they just kept an eye on it while they did the routine MRIs for MS.
in 2007, it decided to double in size within a 6 mo time. since it was in right front lobel and headed for a major section of nerves and blood vessels my neuro sent me to a neurosurgeon to discuss removal.

he handled it all very matter of factly. it also was a menginoma (i believe i spelled that right?) if not, it was the kind that is rarely cancer only about 3% or less chance.
thank God it was in between the brain lining and skull.
i have a friend who just underwent almost the same exact surgery and is doing well.

jot down your questions, but most likely the dr. will answer a lot of your questions before hand or will send you on to a specialist who will be more able to handle your situation.

worrying isn't going to help, but that's not easy to not do i know. try meditation and exercise to help with the stresss of this.

keep us posted, we care about you!

you'll be in my prayers

take care and God bless ya!

[naphappy]

Fishead-

Others have offered plenty of good advice already.

The only addition that I can think to add would be to take someone with you.

This person should be familiar with the questions that you want to ask and be ready to write down responses from the doctor.

I have a horrible time during visits and often need to call for clarification later or I have trouble remembering what was said.

Good Luck with your upcoming appointment. Please keep up updated.

[fishead]

naphappy, airfare, and (oh gosh I can't remember who else);

Thank you so much for some great responses. I haven't researched anything about brain tumors. I wouldn't know anything "specific" to research. airfare=I feel so much better after reading that you had the "brain tumor" thing, and it was nothing horrible.

I really am NOT worried. I am more perplexed than ANYTHING.

Tomorrow morning is my appointment. I will post what is going on in hopes that it can help someone ELSE!

[Seasha]

Hi fishead - nothing new to add here, just my best wishes and luck with your appt tomorrow!