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Can prolactinomas grow bigger again?

Posted , 3 users are following.

meg87258
meg87258

I am 18 years old and have had a prolactioma for around five years and am cabergoline which has helped my prolactin levels go down slightly.  I am still pretty uneducated about prolactiomas duw to my young age.  Although the cabergoline has helped reduce the size of the tumour this year i have had to stop my mdication at three seprate times due to needing antibotics for tonsilitus and mt doctor told me to stop the cabergoline whilt i took the antibiotics.  Then recently I have being getting severe headaches and also my period did not come (i am sure i am not pregnant) which is concerning me if missing the treatment is causing the tumour to increase again.

Sorry this is rambly but i am a little scared so if anyone has any advice it would be greatly appericated 

0 likes, 6 replies

6 Replies

  • ATM
    ATM meg87258

    Posted

    Hi, your timeline sounds very similar to my own but I'm now 25. I am not sure why your doctor told you to go off cabergoline while on antibiotics, this has never happened to me. The only time I've ever been instructed to go off mine was when trying to conceive and during my pregnancies. However, any time I do go off my cabergoline, my tumour grows bigger and I become symptomatic again. I am very responsive to cabergoline so as soon as I go back on it, my hormones drop very quickly and this generally results in a reduction in my tumour size but also the catch 22 is that as soon as I do stop the medication, my prolactin goes through the roof and my body goes haywire. If you're like me, they've explained that my prolactinoma will always be there, even if it is too small to be detected by MRI... so it's just something that needs to be managed long term. Can I ask how long you've been on cabergoline and has your specialist done an echocardiogram ??
    • meg87258
      meg87258 ATM

      Posted

      Hello thank you for your reply it is very helpful.  Yes they have explained that it will never fully go in its own.  Ive being on cabergoline for around four years now.  And sorry im not sure what that is? I have only seen my new specilist once as I have just being transfered from the childrens section of the hospital to the adults.  Thank you again
    • ATM
      ATM meg87258

      Posted

      Hi, you're more than welcome. There is a LOT to learn about this stuff especially being quite young. I've found I need to be very choosy about my specialists as most endocrinologists don't specialise in prolactinomas so I've seen probably about 8 before finding the one I am most happy dealing with. I now travel 8hrs to see him but it is so worth it!! The reason I asked about the echocardiogram is because there is evidence that long term cabergoline use causes cardiac valve disease, especially in Parkinsons Disease treatment with cabergoline. With regards to treatment of prolactinomas, the evidence isn't as strong because the dose we take is much smaller, but intermittent echocardiograms are an extra precautionary measure that my specialist has taken, linking me up with a cardiologist, to make sure I am not having any changes in my heart due to long term cabergoline use.

      Here is one study that explains this a little bit, but there is a lot of research out there.

      http://www.eje-online.org/content/159/4/363.full

      I have taken a keen interest in learning as much about my condition as possible and although not pituitary specific, have done my PhD in neurophysiology. This has helped me make informed decisions about what advice I'm comfortable with from specialists, and as I eluded to earlier, which specialists and/or GP's I am happy to see about this issue. In my experience, maybe 1 in 10 GP's have ANY clue about prolactinomas - hence why I was not diagnosed despite EPIC and OBVIOUS symptoms for 7 years even after seeking second, third and fourth (plus) opinions from GP's.

      I'm always happy to chat if you like. All the best...

  • sheryl37154
    sheryl37154 meg87258

    Posted

    Meg, I have been on cabergoline for 7 years, had 4 surgeries + antibiotics in that time and never once has taking cabergoline come into question, i.e. being told to go off it for the duration.  Sounds like another myth that drs perpetuate to me.

    I hope you are being monitored by an endocrinologist and not just by your gp.  If not, ask to be referred to an endocrinologist.  Have you had an MRI?  If not, you should have one now and then to monitor your prolactinoma.

    Excess prolactin makes your oestrogen ineffective causing lots of other problems.  Everytime I try to reduce my dose of cabergoline, menopause symptoms come on.  My endocrinologist says taking cabergoline forever will not be a problem.

    You might be getting waves of anxiety and/or depression, and sweats, too which you might not connect with your prolactinoma.  These are symptoms of low oestrogen, i.e. menopause.  Women with high prolactin who are not being treated adequately need oestrogen and calcium supplements.

    Contact your country's pituitary gland tumour association and talk to them for more information and assistance.  Education is power, get all the knowledge about it that you can and be assertive with your doctor.

    Good luck

    • meg87258
      meg87258 sheryl37154

      Posted

      Thank you for the reply.  I am being monited my an endocinogist, and have MRIS around every six months, the next to be sceduld after my visit to the hospital in November.

      Also I have being feeling a little depressed lightly so thank you for telling me that can be linked with prolactionomas

       

    • sheryl37154
      sheryl37154 meg87258

      Posted

      I am pleased to hear you are seeing an endocrinologist and having MRIs every 6 months.  If they start saying you don't need an MRI anymore, ask for one every 12 months.  Some drs think you only need it for a little while but at your young age it needs watching.

      There was a girl on this forum who had her first and last period at age 14 and it was many years later that someone finally diagnosed prolactinoma.  In the meantime, she was suffering menopause all those years from age 14.

      It sounds like it was your gp who told you to go off cabergoline while you take antibiotics.  Ask your endocrinologist if that is necessary and could he inform you gp.  You really don't want your hormones messed around unnecessarily.

      As well, get some info from the pit gland assoc and take it to your dr to read.  Don't assume drs know everything.  It is your life, your health, and you must take charge of it, and responsibility for it.  Question everything, take notes and ask for copies of your test results.  Write down the questions you want to ask and don't be afraid to get your notes out and read from them.

      It took some of us oldies time to learn this from bad experiences but you have the heads up on it now, so you can put your knowledge to use immediately.

       

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