Looking for others with Pituitary Adenoma

Posted by dmedina71 @dmedina71, May 3, 2016

I like to now if their is anyone who has been diagnosed with Pituitary Adenoma

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Hi @dmedina71, welcome to Connect.
I'm tagging several Connect members who have talked about their experience with pituitary tumors (adenomas) in the past @neffjsn @osbonkim @shawnpaul @carolina2501 @donperryman @cathy14 @markvic @mybeau12. While it's been awhile since they've posted here, I hope some will return to join this discussion.

@dmedina, you mention in another discussion thread that it is your husband who has been diagnosed with a pituitary adenoma. How is he doing? How are you doing? We look forward to getting to know a bit more about you.

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I had a pituitary tumor removed in October 2014 at the University of Michigan Hospital. I have acromegaly.

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@lindalongberry

I had a pituitary tumor removed in October 2014 at the University of Michigan Hospital. I have acromegaly.

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Hope you are doing well. Mine taken out in 1987, Mayo Rochester, take hormone supplementation. No residual bad effects since. Hope you do as well.

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I was diagnosed with Pituitary Adenoma..... I was 33 years old with 3 kids, 15yrs, 5ys, 2yrs old... I am 58 years old today.

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@conniemk

I was diagnosed with Pituitary Adenoma..... I was 33 years old with 3 kids, 15yrs, 5ys, 2yrs old... I am 58 years old today.

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Hi, how was it after surgery,and how long did it take you to fully recover<br>back to normal life style.how are you feeling now.<br>

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I was 43 at the time. Psychologically, it took a couple of months to a year to relax about the whole thing. I'm 72 now, been taking HGH, Testosterone, and Synthroid, pretty much steadily since the surgery (the HGH came into the picture shortly after Genentech came out with the recombinant version). I still choose to work (self employed) financial services. I play tennis regularly, easily run 3-4 miles at a time maybe 3 times a week, swim half a mile a couple of times a week, workout with weights/machines a couple of times a week, and basically have no chronic injuries such as knee, hip, shoulder, back, or whatever. I've done these things regularly my whole life (run in total around 50,000 miles). I'm grateful and know I'm lucky but actually feel kind of creepy sometimes listening to the other people my age complain about their aches and pains since I don't really have any to speak of with them. I'm slower running and swimming than I used to be. I'm saying all of this because maybe the hormone supplements have actually kept my levels at more optimum levels than others my age, allowing me to so far escape some of those age related maladies. So maybe, strangely, the surgery had a plus side.

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My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy - cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits - it's me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred - or begin to grow? I've also heard there is medication that can be take to help reduce the tumor as well, but he wasn't a candidate for that.

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@shellsk24

My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy - cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits - it's me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred - or begin to grow? I've also heard there is medication that can be take to help reduce the tumor as well, but he wasn't a candidate for that.

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Hi Shells.<br><br>I wanted to ask, did you and your husband seek more than one opinion. Do<br>you live here in Miami,Florida.<br>We have been monitering for 2 years but the doctor said,not to prolong it<br>anymore. Even though his MRI's show is stable and has not grown. We go to<br>University of Miami/Jackson Memorial Hospital. maybe you should get another<br>opinion.<br>Endoctinologist check on my husbands cortisone level by spit and blood test.<br><br>

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@shellsk24

My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy - cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits - it's me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred - or begin to grow? I've also heard there is medication that can be take to help reduce the tumor as well, but he wasn't a candidate for that.

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Hi @dmedina71 Yes we had 3 opinions. 2 doctors suggested the radiotherapy as the best approach. Our MRI monitoring was for 5 years then the 4th and 5th years started showing growth. We are not in Florida we are in Arizona.

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@shellsk24

My husband was diagnosed with a rather large pituitary tumor in 2010, had emergency surgery to remove as much of it as possible, then a second surgery with a camera to remove more of it 6 months later. The most recent annual MRI came up with a slight increase in size this year, so the doctors recommended radiation therapy - cyberknife. Radiation in itself is a bit scary so were not sure what to expect. He will get low dose therapy 5 days a week for about 6 weeks. We are just now beginning the radiation process this week (May 23, 2016). He is in GREAT spirits - it's me with the worrying thoughts. Has anyone else had radiation therapy for a pituitary tumor that has recurred - or begin to grow? I've also heard there is medication that can be take to help reduce the tumor as well, but he wasn't a candidate for that.

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Was the decision of the treatment Co joined with endocrinologist and<br>neurosurgeon. That's how we are doing it. He got diagnosed also cushing ' s<br>Disease,and your husband<br>.

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