Prolactinoma - I have a brain tumour

[Carolina]

gosh i cant believe that im so sorry! i hope the meds work spedily for you and with little side effects...i know its always good to find out what wrong but im sure you didnt expect this! and as you said at least its not malignant!your in my thoughts

 

[hypnorm]

well i have been on the medication for 2 months now, side effects were not nice at the beginning but have settled down, the milk that i had has dried up still a little bit there but can't get any out as easily.
Tuesday is my MRI scan at the John Radcliffe in Oxford, 11am. not looking forward to it, although i know what the scanner is after helping with hundreds of Dog and Cat MRI scans it will be weird to be 'on the other side'
Think i'm worrying more about having a catheter in my hand if they have to inject me with a contrast agent.
In a way I hope that they will find something small there then everything was correct.
Will let you all know how it goes.

 

[doctordeesmrs]

Good luck hope it goes well. Will be thinking of you.

 

[seosage]

Hiya matey,

Just wanted to let you know that I've been through it too. I'm 35 now and realised I had a problem when i was 23 and started lactating - which was a bit of a shock! It was a long time ago so it sounds like maybe procedure has changed - but i lived in Newcastle and there was a specialist who could do operations to remove it. they gave me a choice of medication or operation - I went with the operation and it fixed me. I have been getting my prolactin levels checked every year since then to make sure it hasn't returned - and no further problems. I'd now got a 6 year old daughter and I'm currently pregnant. Chin up - you'll get through it - mine was diagnosed in January and I got it removed in August. Han xx

 

[AppleBlossom]

So sorry to hear that x

 

[mugzy]

How did your scan go?

Brain tumor is a scary diagnosis, but if it makes you feel any better, Prolactinoma is the best of the lot - it may be life changing but it's not life threatening. And once they get your prolactin levels under control you should be well on your way to a little bean.

 

[hypnorm]

How did your scan go?

Brain tumor is a scary diagnosis, but if it makes you feel any better, Prolactinoma is the best of the lot - it may be life changing but it's not life threatening. And once they get your prolactin levels under control you should be well on your way to a little bean.

Although its not life threatening it can affect your quality of life, as it gets bigger it presses on your optic nerve causing visual loss and headaches. So you can potentially loose your driving licence.

Scan went ok today - Oh couldnt find anywhere to park so i had to go in by myself.. was almost in tears! found the place quite easily sat and waited the old dear sat next to me said 'they are running late dear' so i have visions of Oh driving around Oxford for hours. luckilly i was seen at 11.20
laid on the table and had my head closed in to a cagei was given a panic button to hold and some cables! i was given head phones piping classical music and then they pressed the button to put me in to the machine, it is SO claustrophobic i had to close my eyes and concentrate on my breathing fr a little while untill i calmed down! then i manged to open my eyes and was fine trying to look around. scan took about 15 mins. radiographer asked if i was ok halfway through. So now i have to wait 3 weeks for the results which is a bit naff!

luckily managed to get my ear piearcing back in with out too much problem!

 

[Suz]

I hope the results are good

 

[Jem]

OMG my friend was diagnosed with this last year. She had been leaking milk and hadn't had a period in 6 months. She went for tests and was diagnosed with this. She had an MRI to determine the size of the tumour and went on medication last July and has 3 monthly appointments. Things are alot better for her now but she worries about conceiving again (she has a 2 year old) as she worries she may have problems this time because of it. Incidently this is what Jennifer Lopez has according to my friend's consultant.

Hope your results are ok xxx

 

[hypnorm]

had blood taken to day to see how the tablets are working.

Although it is fairly rare there are quite afew out there and the pituary foundation has been a great support.

 

[mugzy]

Although its not life threatening it can affect your quality of life, as it gets bigger it presses on your optic nerve causing visual loss and headaches. So you can potentially loose your driving licence.

I know it's life changing as you will have to have it checked often. But you shouldn't worry about it affecting your sight as in most cases it is manageable with medication or (as a last resort if medication doesn't control the growth) with surgery. The people who loose their sight are usually those who have ignored all other symptoms and present with headaches and visual loss. There is no way they will let yours progress to that stage.

I had a brain tumor so I know how scary it is. About 3 years ago my friend was diagnosed with prolactinoma so I did a whole lot of research for her. She takes pills to control it and is on 6 monthly checks and doing well. Last year she and her husband decided they wanted to start a family, she came off bcp and was pregnant 1 month later! She had a little boy in January.

Good luck with the results of your scan - three weeks!!! It's terrible they're making you wait so long.

 

[Ang]

My friend has prolactinoma also and the treatment has worked well. The tumour has reduced in size and she is OK now. xx