Early puberty and pituitary tumour

[Turbulent1]

Hi,
Just posting to ask if anyone here has been through this and can offer any advice.

My daughter started signs of puberty at 8 1/2 and got periods at 9.

Dr said it was worth investigating as under 10 and apparently one cause is a pituitary Tumour which unfortunately is the cause in my daughters case.

We have an appointment to speak to the specialist tomorrow. If any one has any been through this and has any thoughts on questions we should ask or just give me reassurance I would appreciate it.

This must be worrying. I didn't want to just read and pass on. My DD also has a pituitory tumour. In her case it is a prolactinoma which I realise is not exactly the same as yours. It was diagnosed in her late teens when she spotaneously began producing breast milk. They shrank the tumour with medication and she is now on long.term hormone treatment. It hasn't impacted her life in any way and she has had four uncomplicated pregnancies and has four beautiful children. So be optimistic!

My son had a pituitary tumour diagnosed after he stopped growing and didn’t reach puberty. It was removed successfully and he now has full hormone replacement which he manages himself brilliantly. It’s a worrying time for parents but the endocrine team will look after you and your dd.

Where are you based? We’re in the south of England. Also do get in touch with the Pituitary Foundation (they have a nurse helpline for any medical queries, loads of info, local groups, and are about to launch a psych support service) as they’re an amazing support. Also some good FB groups if you’re on there.

Questions to ask: will they want to remove the tumour, manage with medication, or monitor it? What is the timeline of treatment? What are the long term implications (eg if the tumour is removed, will that affect the pituitary function and need long term hormone / cortisol replacement)? Are there impacts on future fertility or growth etc?

They are tricky growths because of the location but usually highly treatable. Hope the questions suggested above haven’t worried you more (I’m rushing to reply before work - sorry) and that the appt with the specialist brings answers and reassurance. Keep
us posted - you’ve got this.

Thank you so much for the replies, feeling much better now.

Thank you for the advice on what questions to ask. I hadn't even thought about future fertility etc.

Im sorry you all went through it too but so glad to hear your positive outcomes

How did the appointment go, @Turbulent1?

Hi and thanks for asking

It went well! It's 8mm so getting a bit big but she is going to try shrinking it with a hormone blocker tablet taken twice a week and hopefully that will do enough to stop it being a problem, if not she will require surgery. We are also starting her on a medication to halt the puberty and hopefully she will continue to grow at her normal rate instead of her bone fusing and the periods will stop for her. She just wants her to get a couple of years of normal growth and then we can stop that one.

@Turbulent1 that sounds like good news. It’s reassuring to have a plan. Hope everything works out well for your DD - wish you both all the very best x