Enlarged pituitary gland - panicking please help

[Bourbona]

I have just had MRI results showing that I have an enlarged pituitary gland and need a further a MRI to look at it and also an appointment with an endocrinologist.

I am panicking. I have just recovered from breast cancer and it looks like I might now have a brain tumour. I feel like I just can't cope with this. I don't know what to do.

It’s not a brain tumor.

Pituitary is a gland that produces hormones that control most of your body functions. It’s seats close to the brain but isn’t part of it. Enlarged pituitary is most commonly due to benign tumor or autoimmune causes (more common in women). Cancerous tumor would be very very rare.
It might affect your hormones so you do need to see endocrinologist and have full investigation. It is a serious thing but not life threatening especially if you take care of it. Did you have any blood tests yet? I hope you can see the specialist soon.

Anyway - extremely unlikely to be cancer. Good luck!

I know someone who had a tumour on their pituitary gland. She had surgery and radiotherapy and it never came back. Couldn’t drive for a year after though. The pituitary gland is separate from the brain, and there’s not a crossover pathway for cancer to spread between the two. You beat breast cancer. This won’t beat you.

I’ve had a pituitary tumour for 12 years. Its treated with medication and isn’t cancerous. The worst thing it’s done for me is cause difficulties with my hormones- I have Addison’s disease, lupus, hypothyroidism, etc. All treatable. Don’t panic!

Thank you for the responses.

@BFrazzled could you explain what you mean by saying it isn't a brain tumour but then saying it is most commonly due to a benign tumour? Sorry, I'm confused.

I'm exhausted from dealing with breast cancer and can't bear the thought of more tests, more waiting, more surgery, radiation etc.

I haven't had blood tests yet but recently had thyroid function test at the GP which was normal.

Thank you for the reassurance about cancer, although I've had a few rare medical things happen before so am always aware that someone has to be in that tiny statistic!

The breast cancer was highly responsive to oestrogen (8/8) so I wonder if there is any link with this if the pituitary regulates hormones?

I've also been feeling really anxious/shaky/high adrenaline recently which I put down to anxiety but I wonder if there is a link to this as well? I've also recently been diagnosed with tachycardia and am on beta blockers.

Oh I've got one of these. It was found accidentally when I was being scanned for something else. I was immediately told that though it was technically a tumour, these things aren't cancerous.

I was referred to an endocrinologist, she was satisfied that it wasn't going to cause me any problems, and I've heard no more about it.

Pituitary is not part of the brain so even if your pituitary enlargement is caused by a tumor it is not a brain tumor. It matters because brain tumors are often cancerous but pituitary tumors only very very rarely.

There is no connection to your breast tumor estrogen sensitivity. But you might have trouble with producing some hormones, including estrogen as a result of having problems with your pituitary because it regulates essentially all hormones in your body. However as the previous poster said they are all replaceable, that is you can take them in a pill. Nor always straightforward but you will be ok.

Thank you so much. This has stopped me panicking. Coming so quickly after a cancer diagnosis it really knocked me for six. Now just have to get through all the waiting and tests. I thought my stress quota was already full!

Not sure if this will reassure you but actually you are far more likely to have low oestrogen if you have a pituitary issue - my oestrogen levels have been undetectable since my pituitary tumour diagnosis. I’ve been on HRT since I was 37.

Thanks. I wonder what they will do if I have low oestrogen as I can't take any oestrogen replacements.

@Bourbona

Thanks. I wonder what they will do if I have low oestrogen as I can't take any oestrogen replacements.

You don’t have to take oestrogen if you don’t want to - it’s the same as any woman who chooses not to have HRT in the menopause but if you did have low oestrogen and wanted to replace it even with a history of cancer there are some forms you can take (google Newson Health clinic website - they’ve done whole studies into this aspect).

I’m another one who has this. Had MRI, saw endocrinologist, have to take tablets twice a week til I hit menopause. She said it potentially could have affected my fertility a bit if I wanted more kids. Other than that she wasn’t concerned at all and other than having to take the tablets it’s not really affected me at all. Might be different for different people of course

Thanks. There seem to be a lot of different causes and the treatment is different for each one. Just struggling with the additional stress and worry of this on top of cancer.

I am worried if I have low oestrogen and they can't replace it though as it raises risk of things like heart disease/osteoporosis. I will just have to wait for my test results but I suspect its going to be a long, stressful wait.

Just for a bit of reassurance:
I had estrogen sensitive BC ca. 20 years ago and I am now at nearly 60 fine without having had hormone replacement - no bone or heart problems.

There are other things you can do / take to protect your bones and heart if you really can’t take HRT. Don’t worry.

Thank you for the reassurance, it has really helped. I am also going to step away from Google!

@saraclara do you have any monitoring for your tumour?

I've just been diagnosed with a 3mm pituitary tumour but not had blood tests yet. Although the endocrinologist was very reassuring I'm still freaked out that I have a tumour in my head! He said I should have another MRI in a year to see if it has grown. Just all feels very scary that something is potentially growing in my head that shouldn't be there.

No signs of it affecting my hormones at the moment but I'm worried I'm now going to be on high alert for the next year and not able to stop worrying about it. The thought of potentially needing surgery is scary.

Also, how can they tell its not cancerous? I known its unlikely but how can they know for sure?

Asking how do they know for sure it’s not cancer is a bit like asking how do you know for sure your plane won’t crash on route to your next holiday…
They don’t know “for sure”, but benign pituitary tumors are quite common and cancerous pituitary tumors are incredibly rare. So even if they saw a tumor on your pituitary, you are still more likely to have for example yet undetected breast cancer than cancer on your pituitary.
Hope it makes sense!

So they don't test it to see if its cancerous? If it was cancerous would it grow quickly or give me symptoms?

I'm just a bit paranoid as I did have a cancer that they said looked benign so discharged me, and they only biopsied it after I went back to the doctor again because I was worrying about it. So I have a (I think understandable) fear that when they say its probably benign that it might not be!

@blooter I had some blood tests but that's all.

I mentioned it to my GP again a couple of years ago when something else came up and I wondered if they were connected, but they weren't and she said there are no concerns at all about the tumour itself.

That's really reassuring thanks. Maybe in time I will stop worrying about it!

There is really no way to check unless it spreads and causes you symptoms - but it’s less likely than you getting basically any other cancer even though you have this growth discovered (probably accidentally? As part of the follow up for your other cancer?)

In fact the benign tumors are very common, just not discovered because most ppl don’t get MRI. Chances are I have one for example, or say your neighbor. We just never had mri to find out.

In short - I would just live your life as if nothing happened and of course follow up on your tests but this is really only to see it doesn’t start causing problems, not to rule out cancer (because there is almost no chance you have it).

Someone close to me has one. Only discovered when they had fertility problems, been aware of it for 10 years. It’s scanned regularly (Usually once every two years) and monitored, it’s not grown in that time. They’ve been medicated in the past but just being monitored now. It’s far more likely to be benign than nasty.

Thank you so much for the reassurance. I think having had cancer before means you then see it everywhere. Especially when tumours are mentioned!

Yes it was found incidentally when they were looking at my sinuses.

@BFrazzled

There is really no way to check unless it spreads and causes you symptoms - but it’s less likely than you getting basically any other cancer even though you have this growth discovered (probably accidentally? As part of the follow up for your other cancer?)

In fact the benign tumors are very common, just not discovered because most ppl don’t get MRI. Chances are I have one for example, or say your neighbor. We just never had mri to find out.

In short - I would just live your life as if nothing happened and of course follow up on your tests but this is really only to see it doesn’t start causing problems, not to rule out cancer (because there is almost no chance you have it).

@BFrazzled are you a doctor?