pituitary tumour,any experience anyone?

[polly28]

have just found out my brother has a pituitary tumour.His symptoms were erection problems which led him to the dr,he has a very high prolactin level.

the info on the web is quite reassuring ,has anyone any experience of this?

He hasn't got a date for a scan yet so don't know what treatment he'll be getting.

polly, I don't have any experience, but I do quite a lot of work in cancer research, and I know that pituitary tumours are amongst the most treatable/benign. They don't metastasise very readily, which is a very positive aspect. I hope your brother gets really good treatment.

thanks tamun,he lives in Canada,so feel a very far away right now

he's been told they may not beable to remove it,but then again noone has viewed it yet so don't know

That must be really hard for you, with him being so far away . I know these tumours aren't always very operable, but most of them are very benign as far as I know, and very slow-growing. Is he getting much support and advice yet, or is it all waiting until he has the scan?

my mum has only just phoned me,he told her today.He finds out tomorrow when he has the scan so it's very much up in the air at the moment.

Apparently he's had the symptoms since september,so don't know how big it might be.

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Polly, I have that condition (am female), have had it for about 8 years (maybe more, but was on the pill and this masked some of the symptoms, till I came off it).

It's kept under control with drugs, I initially had bromocriptine, but my levels were so high, that the amount of tabs I had to take made me feel sick. Am now on Cabergoline, much better for me - all symptoms under control and just see the specialist once a year.

The scan was pretty harmless btw.
Any other questions, ask away!

Dh had a pituitary gland tumour removed a few years before I met him - so about 30 years ago!!!! (he was early 20s)
He had been getting headaches and patchy vision problems I think. The gp was very quick to get him referred to hospital and he was operated on within days.
Nearly all his hormones now come from injections, nasal sprays and pills. Actually his testosterone injections have now been replaced with a rub on skin gel. He was presribed a different cocktail of hormones in order to conceive our 2 children. We have never had to bother with contraception - bliss - and we were very fortunate that we conceived both our children within a few months of 'trying'.
He has one hospital appointment per year where they do blood tests to monitor his hormone levels. And I think he gets an annual MRI scan to check for any regrowth.
He says facing the operation was scary but he's never really given it a thought since. I think one life insurance company years ago decided to increase his premiums but it's never been a problem since then.
Hope this is reassuring, and that your brother gets good treatment.

thanks for those reassuring messages.

was wandering why some people get it taken out and others rely soley on medication?

He doesn't need to worry about fertility problems but assume he would be concerned about erectile dysfunction.

Would testosterone cure this?

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