Questions I get asked about my Pituitary (base of brain) tumour

Many of my followers / connections on LinkedIn know I keep growing pituitary tumours because I bang on about it all the bloody time.

Not for attention - okay maybe a little - but to raise awareness as the symptoms are very similar - in some cases - to other things like ageing or menopause, or are bloody weird, so we may be inclined to ignore them.

I've been growing these mofos since 2011 and have so far had four tumours removed via three surgeries (2012, 2019, 2021) and gamma knife radiotherapy in 2014. I grew another one between an MRI in March 2021 and the surgery in June 2021 so that bugger is coming out soon too - if you all stop getting Covid and hogging ICU anyway!

So, over the years I have had many questions and I thought I'd answer some here as a way to raise more awareness and I find it cathartic too.

How do they get the tumour out?

Through my nose! The pituitary gland sits at the base of the brain and can be accessed that way. I can't blow my nose for three months after surgery or look down to stop brain fluid coming out - a CSF leak. I know, right.

The what gland?

The pituitary gland. It took me a good year to spell that without saying each letter slowly. It's a small but mighty gland that sits at the base of our brains. It controls our endocrine system (hormones) and we all know what happens when a hormone is off - ERROR 404!

How did they find your tumour?

Well, I wouldn't take 'you're a little bit stressed, love' as a diagnosis after a year of being fobbed off by a female GP. I was losing my memory, had no periods, hair loss, exhaustion and vertigo to name but a few symptoms - no headaches though. I insisted on a second opinion - it was either that or spin that bloody doctor in her chair at G force until she fell out and banged her head on the corner of her desk. I was sent to a gynaecologist - because same female doctor decided it was menopause despite blood tests saying it wasn't - Gynae did a prolactin test, which should have a result of 20 to show it's normal. Mine was 10,000. This gynae prolonged my life and stopped me from going irreversibly blind.

Is it cancerous?

It's very unusual for a pituitary tumour to be cancerous, but they check it every time they remove one. Mine have all so far been benign.

You must be so pleased it's not cancer?

I'd rather it was neither and not there. When something is benign it does not mean you're going to live a full healthy life. Cancerous tumours are more likely to grow faster and spread, but benign tumours do too. Mine grows very fast. Which is ironic as I stopped growing as a human when I was about 11 but this thing desperately wants a place in the Guinness Book of Records.

Has your tumour spread?

Not beyond my head, no. I no longer have a pituitary gland so it latches on to other things - like a creepy ex boyfriend who can't seem to accept they're not 'the one'.

Why can't they get it all out?

Cus they're bloody lazy! Lying, obvs. Love this question, because it's one I'd ask too. Okay, so... they do get it all out - what they can see anyway. I didn't appreciate this until recently, but there's always bits the human eye or an MRI can't see and that's the blighter that keeps hiding and then springing back to life when the surgeons have sewn me back up.

Is it going to kill you?

It's something silly like 97% (don't quote me) of people with these particular tumours have no issues with them. They are treated with medication or surgery and that's it. But, I like to be different. Yes. I am going to die from this as opposed to with it. I was told in August that without it I would likely have another 40 years but with it I won't. I can't keep having surgery - too many risks - which is a bit of a shame because the food at Southmead hospital is amazing.

Some people don't call these brain tumours, why do you?

Because it's at the base of my brain and the NHS, my surgeons and endocrinologists have always called it that. A recent appointment with an oncologist / radiotherapist also said 'I call them brain tumours, is that okay?'. It's on my brain.

Will you have chemo and radiotherapy?

They're hoping I can have radiotherapy after the next surgery but the tumour is very close to my optic chiasm so the dosage won't be too intense, if they can do it at all, otherwise I'll go blind. Chemo comes with some potential side effects requiring urgent medical care and this is a big worry for me as the care at my local hospital (Swindon) is appalling, no empathy for anything, lots of mistakes and they only work together when you complain, and they're not equipped for anything other than ingrown toe nails, so I'll have to weigh up the pros and cons.

What's the long-term prognosis?

It will kill me. It's likely I will lose my sight first so I have a friend on standby to monitor my lip and chin hairs for me. They don't know how long, but respite from surgeries has been anything from 18 months to two years, so I've likely at least that.

I'm so sorry...

Don't be. We were obviously devastated when we first found out but I've got a beautiful grown up daughter and a loving partner, and we are financially comfortable, I can still run my business and there's nothing I need. In a way, and this may sound weird, I'm in a better position than many as I will never put off anything I want to do thinking I have 40 years to do it.

Do you live normally?

I do to an extent when I am tumour 'free' and not growing a new one (haa, that sounds rude) but I only had my last surgery less than 3 months ago and am growing my fifth so I am incredibly fatigued all the time, which has got worse in the last few weeks. I can't exercise, which I do miss, but there's no point being sad about that because sadness won't change anything. I do cry sometimes but I think that might be my medication more than circumstances.

I spend about 20 hours a day in bed and can't drive as my concentration is not good. The government have awarded me disability living allowance and a disabled badge which is incredibly kind. Disability living allowance is awarded based on need and not on income.

I have chronic symptoms that'll never go, no matter what.

Have you tried...

Please, never, and I can't stress this enough, never start a sentence with 'have you tried...' or 'have you considered...' if you're not a medical professional because it's insulting and incredibly unwelcome. I've had someone suggest I try some juices as opposed to surgery. You can imagine my reply.

I think I have some of the symptoms, what should I do?

I obviously can't provide any medical advice AT ALL, but what I do always say is; if something isn't your normal get advice from a professional and if you're not convinced by that advice get some more!

I also highly recommend The Pituitary Foundation they're helped me enormously over the years. They're a small but mighty charity based in Bristol and you can donate money to them if you like; here's their donation page .