18 year old daughter with pitiuary gland tumor

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Hi my daughter was diagnosed with a pituitary gland tumor in October 2017, symptoms were boobs leaking, so dr orders lab work and her prolactin level as 75 and tumor was 5x5x6, we were referred to endo , but he didn’t prescribe anything just wanted her to come back in 4 months , prolactin levels are up to 121 and we got a mri done today to see if tumor has changed.. do you all know if prolactin levels if that means tumor grew?

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  • Posted

    I'm not sure but I wouldn't worry too much about it

    Once she has surgery or goes on medication

    the prolactin levels should decrease

    there are medications to help with prolactinomas

    I would maybe look under pituitary tumors and UCLA

    UCLA has very good info about pituitary tumors

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  • Posted

    Hi, first of all don’t worry too much. I was diagnosed with a pituitary Tumor in 1999, my prolactin levels where over 2000 at that time. After an MRI scan my endo put me onto bromocriptine which was very fast acting for me. After a few years I was placed onto cabagoline which is now I think is the preferred medication today. Approx six years ago I was taken off my medication, although I do still attend hospital for blood tests just too check on my prolactin levels, which up to now have been ok, even without meds. My next appointment is on Friday of this week, give my best wishes too your daughter.
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  • Posted

    Do you know about the Pituitary Institute at pituitary.org.uk ? You may find help and advice there.

    Key piece of information that you both need to know is that pituitary tumours are almost always benign. I assume you already know that, although in the skull, it is not in the brain]. Growth will probably slow. The normal treatment for a small tumour like that is to leave it alone and treat with medication. An op to remove a pituitary adenoma is no big deal nowadays but even so, like any op, it carries risk and shouldn't be done unless it is really necessary. It is conceivable that an op might fix the prolactinoma but create new problems where one or more of the many functions of the pituitary stop working, giving a different set of problems. So it will be monitored by MRI to see what if anything needs to be done.

    Our best wished to your daughter and you.

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    • Posted

      I forgot to say that the Pituitary Institute has a support network for young people with pituitary disease. Your daughter may find it helpful to talk to someone who has already been there, done that, got the tee-shirt.
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    • Posted

      Well after four months gland tumor prolactinoma went from 5mm to 1.23 cm we talk to endocrinologist he recommended for us to talk to neurosurgeon maybe consider surgery due to her age she’s 18 that way she doesn’t have to start taking medication as an early age we went to a neurosurgeon he recommended the same thing but it was our decision and of course my 18-year-old want surgery she wants the tumor out what am I supposed to do she’s begging and saying that she’s not gonna take medication she wants the tumor out I’m so scared don’t know what to do
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    • Posted

      First at most important, pituitary tumours are almost never malignant so her decision does not have to be a rushed one. Even so, to increase in size by 25 times in four months is quite a lot, so I wouldn't hang about as she will have to wait for her turn in the queue*. For context, mine was 3.5cm diameter (35mm, eyeball sized) when I had my op and had started to affect my eyesight because it was pressing on my optic nerves. So she can't stall forever. What I don't know is what the medication does: is it just counteracting the excess prolactin or is it working to reduce the tumour? But I think it is only the former, she needs to know.

      The op itself is fairly straight-forward nowadays but it is not trivial. Although the pituitary is not in the brain, it is attached to the brain (hypothalmus)  and there are some important structures (eg optic nerves) and critical blood vessels to be negotiated in a very tiny space - but modern instruments [stereo microscope/endoscope, for example] are very precise. So there is a small risk of a stroke.

      If your daughter were 58 or even 48 I would say that the risk/reward ratio suggests don't operate - yet. But at 18 she has her whole life ahead of her and doesn't need to live with that sword hanging over her head. Of course a miracle cure might appear in ten years time but you can't live on maybes - she can only work with the best information she has today. And it has to be her decision, not yours. If it goes wrong [which it almost certainly won't], then it was a risk that was her choice to take because, in her weighing of the odds, it is a risk worth running because the option to just live with it is worse.

      As you can guess, I'm no counsellor. I hope this helped but maybe it made you even more worried!  But you will worry anyway, whether or which until it is resolved.

      *  Either way, I advise that she says yes now just to get in the queue since, as it is non-critical, it will take time for her turn to arrive and they expect some people to change their minds while waiting so it is ok if she changes hers in the meantime.

      My very best wishes. If she wants to send me a PM [private message], feel free.

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