Just been diagnosed

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I'm 19 and been diagnosed with a non functioning pituitary tumour at 1.4cm. They are considering surgery for me. I'm meeting with the neurosurgeon next month but wanted to know if anyone's experiences. I'm very scared as im sure you could imagine!

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  • Posted

    Hi Kimberly, I've had the surgery and it isn't bad. The important thing is that your surgeon does the surgery regularly - like on a weekly basis. You have what is considered a large pituitary tumor. You may also find that it is secreting hormone after they send it to pathology. You also need an endocrinologist who specializes in pituitary disorders. I have acromegaly and not too many doctors are familiar with it. Because of the size of your tumor it can start to bother your eyes and you don't want that. Don't be afraid. It's not cancerous. Just find experience.
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    • Posted

      I've seen my endocrinologist and my opthomologist so now I'm waiting on neurologist. It's all going so fast
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  • Posted

    Also, contact your country's Pituitary Gland assoc and find out everything about your condition and what your options are.  Educate yourself about it so that you are not a 'helpless victim'.  You are very young but you will have to be strong and assert yourself.  Can someone (a parent) go with you to your appointment to support you and your questioning?

    Find out how absolutely surgical removal is from other sources, get a second opinion if necessary, can it be delayed, or treated with medication, etc.

    Mine was a prolactinoma and was treated with medication.  The endocrinologist wanted to leave it untreated until surgery was necessary.  I had researched it and knew that it was treatable and told him so and that I wanted to start this medication without any further delay.

    Good luck.

     

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    • Posted

      Thank you so much. My mum and dad are with me at every appointment. It's just so scary reading up on everything, as well as hearing it. I still haven't told many people but it's a hard thing to keep to yourself
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    • Posted

      What caused you to find the tumor? What are your symptoms? I had daily headaches but have been very fortunate to not have many of the other affects that go along with acromegaly.
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    • Posted

      I was having headaches too and being tired a lot, also my eye sight seemed fuzzy. I went to the optitions who refered me to hospital the next day because they thought they saw something swollen at the back of my eye. That's how it all started
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    • Posted

      You have to weigh all your options but I have to tell you - my eyes feel so much better after the surgery and I didn't realize they were bothering me before surgery. There is a chance your tumor is producing some hormone and they can figure it out with biopsy.

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    • Posted

      Sorry, writing with iPhone and it's a little difficult. Let me know if I can help. I have years of experience but you sound like you're in a good place.
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    • Posted

      I'm using my iPhone too lol. Well I had blood tests done and they said my hormones were fine! Yeah the eye sight has been a problem for me. I'm beginning to feel sick too which isn't nice
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    • Posted

      Kimberly - there is a Acromegaly Girls Only Facebook page that you might find helpful.  It's a closed group but you can request to be in the group. You may or may not have Acromegaly but I think it might be a good resource for you.  Are you in the UK - I'm in the US and I think that most of the women are also in the US but you can possibly get help in finding a good surgeon or have someone confirm your surgeon.  It's worth taking a look.  
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  • Posted

    Hi , I'm a 34year female, I had surgery when I was 18 and when I was 24 and radiotherapy. The surgery has progressed so far that the second time I was only in hospital 3 days. Be strong you'll get through it, I live my life like anyone else now, I've worked full time for 9 years. I'm on life long medications but it doesn't effect me I feel well and healthy
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    • Posted

      Yeah I totally understand its a shock but the operation is ok. These endocrinologist and surgeons are amazing people they look after this on a daily basis and know exactly how to take care of you. Take one day at a time , try and make positive daily plans and postpone worry to set worry periods so if you do get anxious allocate a set day and time to spend thinking for one hour then stop. If you need advise just message me. Love Rachael xx
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    • Posted

      Sorry it's took me so long to reply but I had to change my password as for some reason it wouldn't let me in! Thank you I appreciate it. I meet with my neurosurgeon on Thurday so I'll fill you guys in on what's been said then smile x
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