Pituitary Tumor - Update 12/29

[kathleena]

My DH was dx with a pituitary tumor a couple of weeks ago. Since the pit docs in Maine are not abundant - we are going to Mass General - to the Neuroendocrine Clinical Center and Pituitary Center. The appt is Nov 30th.

His labs are normal, so looks like it may be a non-secreting tumor.

Anyone have any experience with pit tumors?

 

[Mackey Mouse]

I do not have any experience with these tumors....but wanted to say that you are in good hands at MGH....this is where my husband goes and they are up to date on what is going on in the medical field...Good luck on November 30...and please let us know how it goes for him...

Please do stay on top of whatever information you need to get to follow your husband....I find that getting information from MGH and getting in contact with the doctor after tests is not as easy as it should be...Hopefully your doctor will give you his pager number and you call and he/she calls you back.. that is my only fault with MGH....

 

[Christine]

Just wondering how they would discover this if his labs are normal?

 

[kathleena]

Lots of people live without knowing they have a pit tumor if it is non-secreting. They sometimes grow large enough to press on the optic nerve and so they start having vision problems or if they are growing on the back side, they may press on the carotid artery.

Last August DH passed out while coughing. They did lots of tests, including an brain MRI. The radiologist saw a "shadow" low on the MRI and wanted to get lower with some dye and look at the pituitary, and that's how they found it. It's on the front side, but it's not on the optic nerve yet. And it's big enough to come out, according to what I've read. It's over 1/2"x3/4"

 

[mlill]

My sister had a pituitatry tumor and had it successfully removed with no complications. Her's was non-secreting. She found it when she went to the doctor for migranes. The surgery was done thru a small incision on her gum above her front teeth and under her nose. She was very sore afterwards, but had little facial swelling or discoloration. It took about two weeks for her to recover and get back to normal. My sister had her tumor about 12 years ago. There may be more treatments available now. I hope your DH gets some good news on the 30th!

Take care,
Michelle

 

[rie'smom]

My best friend from college had a pit tumor. Her body was acting pregnant and that's what clued the doctors. She had it removed and has done fine ever since-about 22 years.

 

[senecabeach]

kathleena......

My prayers are with you and DH ...MG is a great hospital...
Will be thinking about you both on 11/30 !

 

[christopher]

I have had an experience with a pituitary tumor removed
in 1998. I am fully functional and on no meds after almost loosing my vision. Would
you like to know more about my experience? I can
recommend highly a surgeon who is a specialist and a pioneer in this field.

regards, Happy New Year

Christopher

 

[rie'smom]

My best friend in college had a pituitary tumor. She had it removed and has had no problems since. The doctors told her that she'd never get pregnant-about 10 years later she calls and tells me to sit down-she was pregnant and now has a 7 year old son.

 

[kathleena]

Hi Everyone

Sorry it took so long for me to check in again. After our 11/30 visit, I went on vacation for two weeks (Wonder and WDW) and then it's been crazy holidays since.

Visit at the Neuroendocrine Center/Pit Tumor Center went very well. We were seen by two docs - the attending and a fellow, both women. Very personable and made us both comfortable.

Looks like this is a non-functioning macroadenoma. They have done more labs and nothing has shown up yet - except Vit D is low and testosterone is low. She is retesting the latter twice to see if it was because the labs were drawn in the afternoon. It was way below normal.

They asked us why we came to MA Gen instead of seeing someone in Maine first, and we said that we knew if surgery was involved, we wanted Dr Swearingen and also that we felt the endos in MAGen had more experience.

So the attending said that while true that 20% of population have pit tumors, the majority are found during autopsy and they are less than 2-3mm and won't bother anyone. Since DHs' is 10mmx14mm, his is much larger and is above the baseline so is a macroadenoma.

She then told us about Dr S and said he is not "scapel happy" like some docs and is conservative and may not recommend surgery. But she said that she does recommend surgery so to get it taken care of before it becomes a problem. She said she thinks Dr S is the best surgeon in the world in his field and that he has a "gift" for knowing what is tumor tissue and what is pit tissue so is very good at removing only the tumor and not much of the pit. She said to just let him know we want it done now, rather than wait.

It's 2-3 mm away from the optic nerve. I would say that is too close for me to want to wait, and DH thinks that too!

We have the next appointment on Feb 1st - we will see the fellow again, and then go to see Dr S.

Thanks for your kind feedback. So happy to hear of so many successes, I really wasn't expecting much because it's so rare to hear of pit tumor surgery.

I'll be back to update after the 1st (hopefully I remember earlier this time!)

Peace and good health to you all.

 

[Mackey Mouse]

Please take care of yourself and do let us know how it is going.

My husband's surgery was at MGH and I have to say I loved his surgeon, he primarily does gastric type surgeries... My husband stayed at the Phillips House after his surgery, we paid extra for this, as we wanted him to have a private room to recover from this huge surgery... it is a Whipple Procedure and quite extensive....but I do believe MGH is one of the best teaching hospitals in the area and feel that you will be in good hands there and staying anywhere you will have great care..

Take care of yourself and keep us in the loop.. Happy New Year with lots of good health and no more pituitary tumor. Hugs

 

[kathleena]

Thanks Mahsha! (do I call you Mahsha????)

I was reading a bit on your threads, saw that you live on Cape Cod and had been travelling to Boston. Didn't quite get all the info on what your DH is being treated for but it sounded extensive.

Dh's surgery - they said up to 2 days in the hospital then up to two weeks out of work - depending on what he does for work. I was figuring on staying in a hotel nearby rather than driving back and forth to Maine. It really depends on how long he will be there. I was wondering if I might need to stay an extra night with him there also, just to be close by.

Do you have any recommendations for a place to stay?

 

[kathleena]

Oh and another comment to all who posted - so encouraging the news about not having to be on meds after. I know if they have to take too much pit, or maybe it all, that there can be a lot of drugs to replace the hormones. The MRI radiologists says that he believes there is pit tissue left, so hoping that the removal will leave him with something........I'm thinking if there wasn't anything that he would be having all kinds of hormonal problems by now???

DHs mom had brain surgery last Dec to remove a tangerine sized benign tumor from the right side of her brain. They had to leave some as it was wrapped around a nerve. So figuring they would still leave some of his tumor also.

 

[soxnation]

Just found this thread, seeing a Dr next week to find out what is going wrong. diagnosed with PCOD but i do not think it is the answer having severe headaches and constant pain on right side of my nose and in my right eye along with depression feelings and bizare weight gain with no loss no matter what the plan. Do not know what the diagnosis will be but i am glad to know there are some people on the boards with some info and experience.