Experiences with Benign Brain Tumour (Pituitary Gland)?

  1. Hi

    I went to my GP for (what I thought were) menopausal symptoms - I wanted to go onto HRT, having tried all the 'alternative'/natural remedies. When I mentioned another symptom I was having, she put her pen down and became suddenly serious...

    It appears I am displaying symptoms of a benign tumour on the Pituitary Gland (base of the brain), and need bloods taken to confirm raises in certain hormone levels to make the diagnosis.

    I have done some research and realise that, if my GP is correct, a benign tumour on the Pituitary Gland is usually successfully treated.

    Just wanted to know if anyone here has experienced personally, (or through someone close), a benign brain tumour and how it went for them (treatment/symptom-wise etc). :shrugs:

    Thanks in advance
  2. Oh lace! :sad: I'm sorry to hear you are unwell! I'm glad that it's benign and hope that they are able to remove it completely!
  3. Aw thanks leanbeanee. Still, it explains a lot! :roflmfao:
  4. Oh yikes, I'm sorry to hear that you're sick, but glad to know that it sounds like you have a diagnosed & treatable condition.

    One of my good friends from high school had/has benign brain tumors. Hers are darn near the center of her brain so hers are inoperable, but she's been successfully treated with medication & monitored twice yearly by her doctors.
  5. My father has a Pituitary Tumor and has been treated for about 17 years. He has no sense of smell from his initial surgery, but he seems to be healthy.
  6. My best friend has a benign pituitary gland tumor. She has not had surgery. She has been successful treating it with medication.

    She had lost her insurance for a while. Because the meds are so expensive, she was off them until she got insurance again. During that time, she had the same symptoms that she originally had.

    Since she has been treating the tumor with medication again (I don't know the name of medication she is on), she has felt much better.
  7. I found out I have a tumor on my pituitary when I was in my late teens. I'm 35 now. For a while a few years ago I was put on meds for high prolactin levels but don't need to take it anymore.

    Other than taking parlodel for those couple of years I've never had treatment for it. I discovered it by haivng an MRI because of migraines. Not sure if it's related to the migraines or not.
  8. I have a pituitary tumor (prolactinoma). I was diagnosed at 20. My ob/gyn did a blood test & sent me for an MRI. I am sure if you havent gone for an MRI you will, to find out the size of your tumor. Unless it very large and messing up your vision, sinuses etc.. you wont get surgery, just medication to straighten out whatever hormone your tumor is affecting & to try & shrink the tumor. I never take my medication because it's too expensive. Well actually they gave me Parlodel which is free but it made me terribly sick. Puking, & headaches that hurt so bad that it felt like I could feel my brain pressing my skull if you can imagine that. I went on Dostinex which is amazing with no side effects but costly. I know it sounds really scary to hear pituitary tumor but try not to freak out. Most of the time it is treated with daily meds. & you go on like usual. :tup: If you want to talk about it feel free to message me.
  9. Thanks everyone, you've been very helpful.

    A couple of you mentioned raised Prolactin levels and this is what the blood tests are mainly looking for. As I said, I thought my symptoms were menopausal - until I mentioned I'd been lactating (how embarrassing - boyfriend got a shock!!:wtf:). My youngest is 18 next month, so knew something wasn't quite right!

    Very reassuring to hear that meds will probably sort it (no vision probs as yet) so won't need surgery.

    Better get down the hospital to get those bloods done (been putting it off) :lecture:
  10. "Until I mentioned I'd been lactating (how embarrassing - boyfriend got a shock!!:wtf:'

    That is how I found out. It was such a small amount but it was there & I needed to know WTH was going on.
  11. I am sorry you have to go through this. The woman in my office had a tumor 2 years ago. They put tubes in her head and drained it and the tubes have to stay there. I dont know if she is on any meds but i will certainly ask her what she felt like afterwards and how long it took her to recover and i will get back to you next week xxx
  12. Glad to hear you are better now. Did you have side effects from the Palodel?
  13. The only side effect I remember from the parlodel was my bank account suffered. It cost a lot more than the other med I'm on. (I have PCOS).

    I might have had some headaches when I first started it or something. I really can't remember. Whatever it was wasn't major because I stayed on it for a couple of years. I never got to the point of lactating but they said if I didn't keep my levels under control I could.

    I think what I have is a nonsecreting tumor or something. I think I was so young when I found out I had it that it didn't freak me out at all. Had I found out at an older age I'm sure I would have freaked. But I was in my teens and my brother used to even tease me and call me "tumor head."

    I'm sure some pituiatary tumors can be worse but most aren't a big deal. When I found out about it my doctor told me that something like 30% of people autopsied have a pituiatary tumor and most never even knew.