Do I have cancer?

[ill13632]

Hi,
I have high prolactin and the endo thinks I may have a brain tumor.  I'm having headaches sometimes,
trouble swallowing, sleep apnea, trouble breathing, brain fog, memory problems.  My thyroid levels are low and I have an enlarged thyroid with 1 nodule:
TSH 1.18 .34-4.5
Free T3 2.6 1.8-4.6
Free T4 .71 .47-1.77
Should I also get the nodule removed?  Shouldn't the endo treat my low thyroid levels which he refuses to do?
I think I should get a new endo, this guy is too slow and doesn't take this seriously...
Thanks very much for your replies!

[SassySharon]

I had my pituitary tumor removed in 2005...They went thru my nose. No radiation. This was my second one.  They are almost alway benign.  Mine was. You need to be seen my a neurosurgeon that specializes in head and neck surgeries only.  Your endo that treats diabetes is not who you need.  I only used a nerologist initially then strictlly my neurosurgeon after that.  The light and loss of sight could be several things.  I experienced the same thing and my tumor was nowhere near the optic nerves or chaism..It turned out I was having a migraine episode.  1st one ever.  1st try to relax.  2nd find a good doc.  
sass

[rumpled]

I am not a doc - I can't tell you what the lesion is doing - for that as well you need a doc in person.

http://www.medhelp.org/forums/Brain--Pituitary-and-Skull-Base-Tumor-Forum/show/994?camp=msc&personal_page_id=862364
may be more affordable - try that expert forum.

The clivus is fairly far away from the optic chasm so I wonder too about the visual issues.

[ill13632]

thanks for your reply.  I read about a similar lesion where it wasn't malignant but the person was still having vision problems, diarrhea and required surgery which found the lesion was inflammatory tissue

[ill13632]

I can't afford to post in the expert forum- is this something I need optional surgery or radiation for?

[ill13632]

is the tumor causing my shortness of breath, exhaustion, brain fog, swallowing problems?

[rumpled]

Hmmm... that does look like it is going through the bone - at least slightly per the MRI - but I would hope that since it is a well-defined oval lesion that counts toward a benign lesion (malignant ones are not nice and oval).
What does the expert say? Did you post over there? I will go look..

[ill13632]

the lesion is about 1.0cm in diameter in the clivus:
located between the tip of the clivus and odontoid process is a well-defined oval lesion measuring 1.0x1.1x0.3 cm.  This does not demonstrate evidence of enhancement and shows decreased signal on T1 and increased signal intensity on T2 weighted images.  This has a benign appearance but does appear to be slightly eroding the cortex along the inferior aspect of the clivus

[rumpled]

Can you put the full text?
Often pituitary tumors move up into the optic chiasm or down into the cavernous sinus. What is the size of your lesion?

[ill13632]

the MRI says that the lesion is eroding the cortex- doesn't that mean it's damaging my brain?  or is that normal and happens to everyone?

[rumpled]

If, for instance, you have a prolactinoma, they will use medications first - that is one tumor that can be treated medically. If it comes to the point where the medications are no tolerated or the medications do not work, then you have to think about other options.

The doctors that I talk to use surgery as a first line and radiation as a second line. There are risks with any method of treatment and you have to talk to your doc about your case...

There are also other types of radiation that are newer than gamma knife that may be more beneficial than gamma. Gamma is handy since it is one visit but it is thus a high dose. There is also cyber knife and proton beam and so you have to consider the others but the docs will not push what is best for you but what the hospital has IMHO so you have to look out for yourself in the case of radiation if your case calls for it.

There are sites that talk about side effects of radiation and we have one person here who is having really bad side effects. Not everyone will have them though.

Your doc is going to have to evaluate your case - just make sure you get copies of all the tests and take someone you trust with you to the appointment. I know when I get upset it is harder to absorb information.

[ill13632]

does anyone know anything about the long term effects of radiation like gamma knife and other procedures?  do you lose the ability to think and you think more slowly and have memory problems?

[ill13632]

does that mean it's a benign tumor- will they use radiation?  I read radiation damages the brain but maybe they do that to make sure the tumor doesn't return

[rumpled]

It all depends on location location location as far as I can determine - I think your question is better suited for the expert forum but I will say that I too have a lesion in my clivus and I am looking to have it removed. So based on that, I would say they will remove it.

[ill13632]

I had the MRI done and they found a lesion in my clivus that appears benign but is well defined and about 1.0cm in diameter.  could it be a malignant or benign tumor?  so even a benign tumor needs to be surgically removed?  I am getting headaches, brain fog, and some bright sparks on the edges of my vision.  thanks so much!

[horselip]

No you don't have cancer. You probably have a tumor on your pituitary gland that is secreting prolactin. They are called prolactinomas. In addition to this it seems that you've got Thyroid nodules a separate thing.

The prolactinoma might be contributing to your vision issues, headaches, and hormones. Then the hormones could be causing a slew of other things. Have you had an MRI yet or is one scheduled?

Rumpled is right about the need for you to find a neuroendocrinologist. They hide out at larger teaching Hospitals like Stanford, UCLA, Mass General, Vanderbilt, etc.

There is an organization called the Pituitary Network Association that has a listing of these doctors that might give you a starting place.

The usual things done are an MRI, a complete workup and hormone tests. From this and your symptoms decisions are made with you regarding treatment. Meds, hormones, surgery etc.

Hope this helps
Horselip

[rumpled]

Yes, you will probably be on meds forever - it is like thyroid - you need the meds to keep the hormones in check.

I would go see a neuro-endo and I would go see a neuro-opthomologist and get  your eyes checked. High prolactin can be caused by thyroid issues so they need to check that out as well as your pituitary so it may not be pituitary at all but your thyroid. Kinda odd they did not do an FNA - they should at least make sure at least once that the nodule is ok. Did they check antibodies? Thyroid antibodies. Your OTC bovine thyroid may interfere with testing though...

As for ANA etc - not a bad idea as when you have one auto-immune thing you can have others, but that is not specific enough to let you know anything to the best of my knowledge. The endo should run a bunch of thyroid, pituitary and other hormones to get the full pic.

[ill13632]

kind of scary to lose my vision

[ill13632]

so they should run ANA or other tests?

[ill13632]

thanks for the reply!  will I be on meds forever?  a few months ago I lost some of my vision for a few seconds and I've been seeing bright sparks, but the endo never asked me about this (he's a diabetes endo).  do I need to take my MRI to a neurosurgeon?  
the endo said my thyroid is enlarged with a nodule, but didn't need FNA- I feel much better and can breathe and rest when I take this natural sources bovine raw thyroid

[rumpled]

No. Normally I would not even respond to such a thing I would send you straight back to your doctor however, I feel safe in saying that elevated prolactin - which causes a prolactinoma (which I had too) and they are 99.9% benign.

I think you need a new endo as well. With the high prolactin, I would call a university near by and ask to be treated by a neuro-endocrinologist. So please call around and ask for a pituitary center. BTW most of them can be treated with medication so you should be ok with that but keep an eye out for the side effects. You may also want to get regular eye appointments.

Your TSH is actually normal (and the lab is using old ranges). Your free T3 and FT4 are technically in range. The doctor should run antibody tests. Have they determined the nature of the nodule - as in how do you know - ultrasound or by feeling it? Have you had it biopsied?