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Pituitary Tumor Affecting > 1 Family Member?
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Pituitary Tumor Affecting > 1 Family Member?

I was curious to know if anyone on this forum that was diagnosed with a pituitary tumor have / had other family members with the same issue?  

I've heard that they can be hereditary but was wondering if anyone within this forum has experienced this scenario.
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657231_tn?1390151580
Most of the doctors I know seem to deny the genetic component. I only know one or two families where the family seems to have a parent and child or in one case, two kids with pituitary tumors.

In my own family, my great aunt had an adrenal tumor and I had adrenal nodules, as well as pituitary tumor and other tumors - the thyroid nodules also run in the family. But when I mention it, the docs immediately lose interest.

Do you find doctors that are interested in the idea?
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Avatar_f_tn
I just had a tumor removed at UCLA and they asked me if a family member has had a pituitary tumor. None that I know of, but people can go through life having a pituitary tumor and never know it.
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1836987_tn?1319119816
What I've learned is that doctors at NIH are always interested and they are convinced through years of research - that they can indeed, be hereditary.  

I've just never heard of anyone that had family members with similar or exact same issues - so I was anxious to understand if others within this forum have personally experienced and/or knew of those that did.  

Thank you for sharing your personal family history with me.  I'll cross the bridge when I approach it - but deep down - I am concerned... naturally.

  
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1836987_tn?1319119816
thank you for sharing.  I have read as well that many people have pituitary tumors and don't even know it!  

If you don't mind me asking - how large was your tumor, what type was it and did they go through your nasal passage for removal?
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Avatar_f_tn
I don't have the measurements in front of me but a non functioning tumor tends to be the tumor that grows the largest which I had. It grew so large that it had a stroke and my vision was impacted and became a medical emergency. Yes they went through my nose. This Friday will be a month after surgery. UCLA is ranked 5th in the world thats exactly why I went to UCLA. My neurosurgeon performed over 4,000 of these procedures and everyone at UCLA knows who he is. I had so far a successful outcome. I'm on thyroid and steroid medication for precautionary reasons. I go back Tuesday to get updated on if I can come off the medicine are if I have to stay on the medicine for life. I tell you this because if your daughter has this go to the Best. Better outcome that way.
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596605_tn?1369950227
It is great that you are going to NIH!!!! yay I was adopted but there is a history of pituitary disease in my birth family. I just don't know much about it. I had a Rathke's Cleft Cyst.

Im not a big believer in the wait and see approach either. Test, test ,test. Then go to the best.

I had complications from my surgery. And maybe that's how it would have been, no matter the surgeon, or waiting time before surgery. I just have this pang of "I wonder if".  But i also know that i made the best decisions that i could at the time so I don't trip on it.

I did not know as much at the time and believed my doctors then. Keep in mind that many of us involved in these forums {with the problems} are zebras not horses. Many folks with pituitary tumors go on meds or have surgery, don't lose a lot of hormone function etc and go on with their lives without any impact.

Those folks are not out here posting and asking questions for the most part. So just keep in mind that those of us who answer questions have had probs and we feel somewhat compelled to prevent it from happening to others.
horselip
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1836987_tn?1319119816
thank you for your feedback.  good point on the fact that when things are going well - folks usually don't post, right?!  :-)  I also think that a lot of folks don't know "where to start".

I like to think of myself as my own doctor and advocate for my daughters health, as well as my own.  Intuition is a wonderful thing...
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Avatar_m_tn
I don't personally have a family member with one but I have a friend who had it in her family. Both of her brothers had pit tumors. One started to bleed and had to have emergency surgery.
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