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Feeling worried

post #1 of 30
Thread Starter 
I guess I am asking for good vibes... About 3 years ago I went to see my doctor because I was getting frequent headaches and dizzy spells. I was also having some abnormalities with my periods, even though I was on bc pills. They took blood work and found that my hormone levels were very off and one especially, prolactin, was extremely elevated. The doctor told me she thought I had a brain tumor! I was sent in for an MRI, nothing was found. They told me to come back 6 months later because she thought the tumor might be to small at that point for the MRI to read. I went back and they found nothing. It's now been 2 and 1/2 years since my last MRI and I still experience the same symptoms. I finally made the decision to switch to a brand new Gyn for my annual exam this year. If is an office of all female doctors who focus on problems, they do not deliver babies. My new doctor sent me for bloodwork, found the same problems, and is sending me for another MRI. She is great though and explained to me that they suspect a pituitary tumor called Prolactenoma. They are typically benign, so it is not a death sentence. My old doctor never explained that to me, so you can imagine my fear all this time. Anyway, I was doing some research on the tumor last night online (trying to stick to reputable websites) and found that the tumor can be treated by surgery, radiation therapy, or if it caught early enough medication. Surgery and radiation scare me. In both of those cases, once the tumor is gone, you have to take hormone replacement therapy for the rest of your life. I don't want to do that. I am scared of a lifetime of side affects from the medication. I have my MRI on the 18th (I HATE those things, they can't do an open MRI to see your pituitary gland), and then I see my doctor for the resluts the 1st week in August.

Does anyone have any experience with this sort of thing? I read that 14 people in 1000 worldwide have pituitary tumors with complications/ symptoms. I guess it is not terribly uncommon, but something I would prefer not to deal with.
post #2 of 30
Tanya, I do not have any experience with this personally, but I am certainly thinking about you, sending you calming and good luck vibes {{{{}}}} and prayers. I am so sorry that your first gyn. wasn't nearly as forthcoming as she should have been; thank goodness you found this new doctor- sounds like you are now in good hands.
Please keep us updated. The positive vibes for you are coming nonstop!
post #3 of 30
Lots of prayers and good vibes being sent your way!
post #4 of 30
I'm sending you all the best vibes I can sweetie. Just the word "tumour" can really spark a fear in people because it's always associated with the worst case scenario. All you can do now, is hope that it doesn't come to radiation or surgical treatment. In any case, no matter what they have to do, it's something you're going to have to face - so all we here can do is offer you our very best wishes and a good dose of board magic. All the best
post #5 of 30
Sending good vibes and prayers your way!
post #6 of 30
Tanya the main thing is it isn't mallignant! Like Amy said it sounds like your in good hands with this 2nd doctor now though!.

My gym instructors husband who is in his late 20's had a benign tumour 2 years ago, and it couldn't be operated on either so he had radiotherapy treatment and he's fine!. He still has to go for regular checks obviously, and was on steroids for a while but he's leading a normal life

I know theres been a lot of controversy over here about HRT, and it's panicked a lot of women, but there's a lot of people doing scare tatics as well because doctors have said the side effects that have been talked about havent been proved 100% yet.

Don't read too much on the websites though Tanya, because like i said to someone the other week about skin cancer, the pictures they show are when the cancer is advanced?!, and thats when it starts to panic people
post #7 of 30
Thread Starter 
Thank you guys so much for the thoughts and prayers I will definately keep you updated.

I am very glad I have found this new doctor, and it was extremely scary each time they said the word tumor. Especially when associated with the brain! The only negative thing about this doctor is that it is taking 2 weeks to get the MRI, then 3 weeks for the results. Waiting isn't fun.

Susan, you are absolutely right about looking on websites. That's why I was trying to stick to reputable sites and was looking for general information.
Do you know where your gym instructors Husband's tumor was? Also about the HRT, I plan to do a lot of research on it if I find out they want me on it. I will also discuss my options with my doctor as far as what would happen if I didn't go through with it. I don't want to put my health at risk, but if the only problems I experience without the HRT is abnormal periods, or something of that nature, I would rather deal with that than the side effects of the HRT....
post #8 of 30
His was at the back of his head.

If you want more info on HRT i can send you all the leaflets from my doctors surgery because the more knowledge the better!.
post #9 of 30
Thread Starter 
Originally Posted by rosiemac
His was at the back of his head.

If you want more info on HRT i can send you all the leaflets from my doctors surgery because the more knowledge the better!.
Susan, I would love that. Thank you so much. If my MRI shows a tumor I would like to see those brochures. I will want to know everything I can because you are right, you can never know too much.
post #10 of 30
No problem!, when you find out just pm me your address.

I have to go to the surgery soon anyway in a few weeks for my check(pap test you call them) so i'll get them then and i'll also have a chat with the nurse about HRT to get her views on it because i may need to go on HRT at some point!.
post #11 of 30
My thoughts and prayers for a good outcome on this are being sent your way.

I've been on HRT for more than 20 years and haven't seen any side effects yet. I know that the risk of breast cancer is supposed to be higher, but with just about everything there are risks and there are benefits. My doctor reduced my dosage to the lowest possible to prevent symptoms, so I'm quite comfortable that I'm not taking any more risk than necessary.

Shame on your first doctor for not letting you know that such a tumor is rarely malignant. The stress must be great enough even without that belief hanging over your head.
post #12 of 30
I hope everything turns out for the best to you. I have one friend who have been on HRT for probably longer that I have known her (since 1999) and she doesn't have any side effects.
With my mom being a very long time cancer survivor and my dad being watched for prostate cancer I know that it can be scary. Be assured we are all here for you!!!
post #13 of 30
Tanya, I'm so very sorry you're going through this, and I'm sending you my best wishes and will definitely keep you in my thoughts and prayers.

P.S. I don't know if you've seen this website yet or not, but here's a link to the Mayo Clinic site... http://www.mayoclinic.org/
post #14 of 30
I don't know anything about your condition, but my thoughts are with you for everything to turn out fine. Usually it's the not knowing that is the worst.
post #15 of 30
Just sending you best wishes...very, very glad you are now seeing this second doctor.
post #16 of 30
Tanya - I pray that everything comes out well.
post #17 of 30
Wishing you the best, and VERY glad for the second doctor now. Think only positive thoughts, as we all will thinking FOR you
post #18 of 30
Tanya you're in my thoughts.
post #19 of 30
Thread Starter 
Thank you all so much for your replies.
I was doing a good job of keeping my mind off of it until yesterday afternoon. Now I can't quit thinking about it. I did some more "research" online and found good stories but also found bad. I know I shouldn't read them but it's hard not to. I want to know what I am looking at. I also searched to find out if there was anything I could be doing as far as diet and/or exercise or anything else I could do that would naturally help me out if in fact it is a tumor. From what I had read about the prolactin levels, a pituitary tumor matches EXACTLY my symptoms and elevated levels.
I had an MRI 2 and 1/2 years ago, they said the tumor must have been too small to see and I should have gone back 6 months later but didn't. I wonder how much it could have grown in these 2 and 1/2 years. That scares me. There is a low risk of death due to the tumor, which is a plus. But I am worrying myself sick about everything else involoved. And in the back of my mind I also worry that if it gets worse will my fiance really want to deal with it all? I know that's all so silly though.

Wow, I am babbling. I just really needed to get those thoughts off of my chest.
post #20 of 30
Tanya, what did i say about looking on those websites?!

Your mind is going into overdrive now because of it, and by thinking about it it's going to make you ill!.

You havent got long until you go to see the doctor, so instead of looking on the websites, sit down with a pad and pen and think of all the questions you want the doctor to answer, because by doing that you won't leave then suddenly think " I forgot to ask him about such and such?!".
post #21 of 30
Originally Posted by rosiemac
You havent got long until you go to see the doctor, so instead of looking on the websites, sit down with a pad and pen and think of all the questions you want the doctor to answer, because by doing that you won't leave then suddenly think " I forgot to ask him about such and such?!".
Excellent point...now Tanya...listen to her!
post #22 of 30
Tanya Tanya Tanya, please stop looking at those sites. Susan has given you good advice on writing down the questions - thats exactly what I do if something is wrong and I need to go to the doctor, like I did with my shoulder and found out it was torn.

I am sending you tons of positive thoughts and you will be okay.
post #23 of 30
I'm sending you lots of positive vibes. And I agree - stop looking at the websites!
post #24 of 30
Are you going to the same place for the MRI? If not, they may want to have the original MRI films to compare to. I know someone who had a malignant brain tumor in high school, and the last time I saw him (age late 30's) he was still going strong! So a benign tumor must certainly be treatable.

I hope they can figure it out so you stop having dizzy spells. I had one bad dizzy spell last week, and it was AWFUL! You will be much happier once this is settled, treated, and you no longer need to fear what is going on in your head.

Like you, I have a morbid curiosity, and always want to know the worst case scenario. But I don't recommend it! Just stick to the Catsite for now, ok?
post #25 of 30
Thread Starter 
Work this week has been busy, so since I got back on Tuesday I am feeling much better about all of this. I guess mostly because I have been keeping my mind off of it. Thanks for all of the good thoughts guys, you really are the best
post #26 of 30
You better be keeping of those websites missy!!!

Keep thinking positive Tanya and it'll be fine
post #27 of 30
Thread Starter 
Originally Posted by rosiemac
You better be keeping of those websites missy!!!

Keep thinking positive Tanya and it'll be fine
Yes, I sure have been

Ok, well I did go back once. I found a message board for pituitary disorders and they have a forum for prolactenoma tumors. I read a little bit, but it was stuff I all ready knew. I haven't been back since.
post #28 of 30
I knew you would!! Ok thats enough, KEEP OFF!!!
post #29 of 30
You are in my thoughts and I wish you well. How are you doing?
post #30 of 30
I agree re the web sites. You are prob scaring yourself for no reason. Many tumours cause little disruption in our lives. I think we hear the word and we worry. Write down all your concerns and questions and talk to your doctor. It sounds like you have an excellent one now and she will be able to help you and allay any fears. It is natural to worry but you will learn more by talking about your actual situation to your own doctor who understands your situation. A web site cant do that for you.

Good luck and keep us posted!
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