Prolactinoma

[Gigimum]

My 15 yer old Dd has just been diagnosed with a prolactinoma, which basically is a tumour on her pituitary gland. We saw the neurosurgeon on Thursday and he says it's cystic but they are happy to leave to see if medication can shrink it. She has started the medication but it's making her extremely tired and she has been sick a few times. They also advised that the medication can damage her heart valves and she needs regular cardiograms to check heart. The tumour is also pressing on her optic nerve.

I cannot praise the nhs enough, she has had a cardiogram, mri, ultrasound, neurologist and optometrist appointment as well as seeing the endocrine team twice all in the space of 3 weeks. They have been amazing at putting her at ease and she is taking it all in her stride.

Has anyone else been through this or can offer some advice on managing the side effects. We are still in the infancy of knowing what's going on and how it will affect her long term.

Hi Gigimum - I'm sorry you're in this boat. My son had a pituitary tumour - though not a prolactinoma - his was a craniopharyngioma (part cystic part solid). He was treated with surgery and proton radiation, I think a prolactinoma is better one to have if you're unlucky enough to have to deal with this. The NHS is remarkable. My son's surgery was transsphenoidal (through the nose). If medication doesn't address it, do you think they would drain it? If you're looking for any second opinions etc, I'm happy to share contacts if you wish.

In terms of resources - there are supportive FB groups for families/patients with all types of tumours. I have found them invaluable. Also you might want to try posting in the adult health section as there will likely be women who have similar diagnosis.

My dad had a macroadenoma and had it removed last month as it was compressing his optic nerve. The surgery was 100% successful and he was out of hospital after three nights. That said he was never treated with medication for it to shrink it first.

Oh and it was transphenoidal. His surgeons were absolutely first class: one neurosurgeon and an ENT surgeon working together. Happy to recommend. We're in SW London.

Is she having chemo? If so which meds? My daughter has a brain tumour as well and is having treatment, different type though.

@diamond400 the vast majority of pituitary rumours are benign and despite their proximity to the brain, they are not brain tumours

Hey @Gigimum

I am 36 and was diagnosed with this when I was about 24 (as a result of absence of periods).

I've been taking cabergoline on and off ever since and haven't ever needed an operation once the meds kept the prolactin level under control.

The only time it has become a problem was when I was trying to get pregnant (but I am currently 4 days overdue with my first child so was all fine in the end!!)

Basically just wanted to say that it terrified me when I first found out but in my experience really manageable and doesn't affect quality of living in any way.

Hope that helps x

@agteacht, thanks for the reply, it's good to hear from someone with the same condition. The prolactinoma was picked up as she has never had a period. she is also on cabergoline. I wasn't sure whether she would need to be on the medication for a few months or years as no one has been able to answer that question. But your response has helped with that.

Congratulations on your pregnancy, I hope you don't have to wait too much longer to meet your little one. I am happy to know it hasn't affected you getting pregnant as that has been one of my worries for her.

Hi @Gigimum
to be honest I've not been very good at sticking to the medication always, I've basically used my periods and length of cycle as an indicator.

So if my periods were regular I stopped for a bit, if they became irregular I restarted. That's probably not recommended but the reality of a long term thing!

I also find cabergoline makes me constipated so that is the driver of stopping it for a while.

Re: fertility, the high prolactin levels basically trick your body into thinking you are already pregnant. I was in a 'no medication' phase and - this now sounds stupid but I guess I had gotten so blasé about it - suddenly realised that it must be affecting my ability to get pregnant. After a year of trying I got pregnant within four weeks of re-starting. If I go on to have a second child I will definitely take it sooner!!

I have had an MRI scan about every 3 years and when my levels are bad they are about 1800. But in the example above they fell to 100 within a month when I got pregnant.

Hope of help x