I had been seeing numerous psychiatrists since the beginning of this summer, with diagnoses of major depression and generalized anxiety disorder. However, after treatment was not favorable, I was somehow led to have an MRI done in September. The MRI found that I had a microadenoma (6.5mm) on my pituitary gland. After blood tests, it was found to be prolactin producing (it was above the normal range, but not I guess not high enough to be initially concerning). I was told to have another blood test at the beginning of December to see where the prolactin levels were. I recently had this done, and apparently my prolactin levels have dropped down into a healthier range again. I was told to keep having blood tests and MRIs every 3 to 6 months, just to "monitor its behavior". However, they said due to it's size, and the normalcy of the blood tests, the tumor shouldn't be something to worry much about. I suppose my question is, has anyone else here had a similar experience? I feel like I'm in limbo.. I'm not sure if this is something I should really be concerned with.. on the one hand, there's a tumor small or not, and that's quite distressing to know, but on the other hand, it is apparently not much of a threat somehow. I have many symptoms that I'm not sure are due to the tumor.. the dr. I saw said it was unlikely the tumor, but I just have a suspicion that it might be contributing... including depression, anxiety, fatigue, sudden lack of motivation, memory issues, stabbing headaches and feelings of pressure, itchiness, a strange feeling of almost suddenly being under water (lots of pressure, my ears feel like they need to pop or something) nausea/digestive problems, and now a new symptom of amenorrhea. I'm being treated for symptoms rather than the tumor at this point.. and I'm not experiencing much improvement. I'm just feeling kind of stuck and lost. This was all found and done at a student health center at my university, so I'm not sure if I should get a second opinion, or if that would be excessive. I also have two heart conditions, and am not sure how much those factor into my state of well-being. I'm sorry for such a long post! I just wanted to get it all out there, and see if anyone could help me make sense of it. Thank you so much,
Hi, I felt the same way when finding out about my adenoma- you hear "tumor" and think ok let's get rid of it! BUT it is true that it is ok to have a small tumor there as long as you are not experiencing symptoms that are too much to bare. Mine was large and too close to the optic nerve so I did have to take medication right away. The medication did shrink it significantly but it will never completely shrink and I will always have a decent size tumor. It takes a couple weeks to get used to the idea of that but eventually you stop thinking about it! I also get anxiety and lack of motivation and have poor memory sometimes but don't know if it's related to the tumor- I've read other places that it can be related. I also have amenorrhea- which isn't so bad until you want to have a baby! You should definitely be ok to just monitor the tumor for now since the size is still pretty small. I hope you have success with your depression and anxiety treatment- I'm sure this finding doesn't help anything but truly don't let it stress you out- it sounds worse than it really is. My father in law is a radiologist and told me that if they had to find SOMETHING on a brain scan this is the thing to have because it is ok to live with most sizes and very treatable if needed.
Your doctors are not experienced in treating pituitary IMHO layman opinion - as well as a pituitary patient myself. Imaging is ok - but it tells you not much. You need testing - regular testing and not just prolactin. Prolactin can be raised by so many things so it takes the full gamut of hormones.
You need a neuro-endo and a pituitary center - try a larger hospital and a university. The health pages may help. A lot of your symptoms do fit and so you have to be persistent and get copies of everything.
Even though you are a student you can get this treated. Fight for it.
Size of a pituitary tumor is not a factor - it is the hormonal action so if you have not had the proper testing to know what type it is and get the proper treatment, then your endo is doing you a great disservice. You need a neuro-endo and several sets of testing to figure out what type it is. I could not regulate my thyroid at all - even after removal - until my pituitary issues were resolved. It is a master gland after all.
I feel bad for your brother as well. There can be other treatments such as chemo or radiation - the mass effect issues from a larger tumor can be a problem but it can all depend on location. Sometimes waiting only makes things worse. He should get an opinion from a good doctor that speaks to him calmly. Surgery is certainly not fun but sometimes it is necessary for quality and length of life.
Dang, you have a lot of tumors in your family. Ever thought about the NIH in Maryland? There are other studies going on now - such as *cooking* the tumors - not exactly correct but some sort of heating them up, and other perhaps studies that may offer up some other options given that the location is not in a favorable place.
I had a Rathke's cleft cyst removed in Nov 2011. They originally thought it was a tumor but when I went to my neurosurgeon, he recognized it as a cyst. I had a transpheniodal episiotomy (removal through my nose) to relieve the stress my tumor was creating on my pituitary. It was located in between the post and anterior pituitary. Yesterday I was diagnosed with ANOTHER microadenoma. Still on my pituitary but in a different location. Has this ever happened to anyone else?! I thought one brain surgery... Done! But now we are waiting to see if this one grows. They don't think it will. But considering I had an MRI in February and it wasn't detected and now it's October and it's 5mm! I'm a little nervous. If it grows I will have surgery again to ensure I do not lose my vision, but this time I believe it will be through my skull due to scar tissue in my nose. Feeling a little lost here.
The Rathke's cyst is actually a complex cyst - tumor and cyst mixed so they can recur. Sadly, I don't think many doctors talk about recurrence but they happen. The cyst is usually located in between the lobes.
I don't know why they won't do the nasal surgery again - I know people that have had it via the same passage 3 times. They can remove the scar tissue usually? I would get another opinion as the open surgery is a huge deal.
Mine was a Cushing's tumor but mine came back, and it is still there. I know many people dealing with recurrences - sometimes you need to get radiation to kill the tumor, the inoperable parts, or sometimes, but rarely, remove the pituitary (I know of only one surgeon that will do that, on purpose, after all other options have been exhausted - sadly terrible surgeons can do it by mistake).
A 5mm tumor should not be large enough to reach the optic chiasm. It has to be twice the size and grow upwards.
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