Has anyone have pituitary tumor that returned?

[gp35]

Has anyone have pituitary tumor return? I was diagnosed 6 years ago and it disappeared. It was a microadenoma and non hormone secreting. Now we think it return due to vision problem. I went for a yearly eye exam with new doctor, vision field test was done and there was enough change to warrant for MRI. My last field test was done 6 years ago. After 3 years of follow up I was told no need for follow up being that it was gone. What are the chances of it returning? WIll my vision return to normal if surgery is needed or some sort of medical treatment was done?

[Rathke]

Mine has returned 5 times.

[Rathke]

Mine has returned 5 times.

[HalinaT]

How have they treated the tumor?

[horselip]

Hi Again-
elevated prolactin levels can cause problems with the sex hormones, in particular. So you will need a full check up to see if your endometrial lining has built up and what is going on with your estrogen, progesterone etc,

And then any type of pituitary growth can affect the thyroid, adrenals ,growth hormone etc. but then it sounds like you have a separate thyroid issue. Just keep in mind that with your thyroid you may be getting hit from the nodules and pituitary effects. The hair thinning is classic hypothyroid.

It could be that the rash is related to your cortisol levels being low too but it could be related to the sex hormones too.

Good to hear that you are getting follow up now. Cabergoline or Bromocriptine might bring your prolactin levels down. These meds can also shrink or make prolactinomas dissappear too :)  

You might write down all of your symptoms for the doctor. It could be that the pituitary is playing a bigger role in some of your symptoms than you first thought.

Good luck!
Horselip

[gp35]

Yes, I have other symptoms but don't know if they have anything to do with them. I also have enlarged thyroid which I found out today but normal tsh. I only have half of thyroid due to nodules. I am also loosing hair, sometimes get dizzy with nausea also I break out in a rash with dark stains on my back everyday, don't have a period for 2 years and hormonal breakout on my face. I have an appointment with neuro endo in August. I have to go for ultrasound of thyroid to find out why my thyroid is enlarged and mention it to my endo for further testing on that.

[horselip]

Are you seeing a neuro endo? I would have them check all of the pituitary hormones: FT3, FT4, TSH, cortisol, ACTH, LH, FSH, testosterone, igf-1, prolactin, vitD,
and then they will do a blood chem which checks all the electrolytes,

Those are the one i can think of. Are you having any other symptoms aside from the peripheral vision? say low sex drive? If so bring that up and they can validate the testing of your sex hormones etc.
Horselip

[gp35]

I had my mri and they compared it from the one before the last one. The last mri they did not checked my pituitary area. I still have a small microadenoma but everything looks good. They want me to see endo being that I haven't seen endo in a long time. I have to get all hormones check and continuing monitoring it every 6 months. My last check with them I had high prolactin and was put on bromocriptine for 2 months and all was cleared. Is there anything that I should ask them? What other blood work should I ask them to check besides hormones?

[rumpled]

Do keep us posted. Sadly, I hear your story a lot where the doctors do not help the patients like they should.

In future, get copies of everything - MRIs (CD), reports, lab work and all - that way you know what is going on and can ask more questions. I also learned the hard way that I was not getting the full story. Get the records and get the full story.

[gp35]

Thanks horselips and rumpled for your replies,
My perpherial vision has changed since I had it checked 6 years ago. They told me it changed significantly from that time. So that warrant for MRI being that I didn't have a MRI since then. I learned now that I have to make sure to have it monitored for now on. I have my MRI tomorrow and get the results by mid week or sooner. I'm not sure what type it was back then because they only told me it was microadenoma and non secreting. I hope to get a correct answer this time about it. I will make sure that I am well inform of the type and continue care. I got referred to a neurosurgeon and endocrinologist who take care of pituitary tumor instead of a regular neuro and endo being that I was discharged. As soon as I find out the results I will keep you guys posted.

[rumpled]

I had a Cushing's lesion return. It all depends on the type of tumor and how aggressive it is as to whether or not it will return or not and there are studies on the rates of return.

There is a saying *once a pituitary patient, always a pituitary patient* because there are always hormonal issues to deal with that can change as well as the tumor can come back, so even after you walk out of surgery, you still need constant monitoring. So the doctor who told you no need for follow up was not a pituitary doctor.

Let us know what the MRI says.

[horselip]

Hi-
I don't know if this answers your question, but I have had an adenoma that disappeared according to an "MRI". But then it showed up again on a later one. So maybe it never left?

The questions about your vision and all will depend on what it is now. Things like how big it is, the shape, where it is anatomically. Some adenomas are round little lumps that are easy to grab. Some are oddly shaped and wrapped around arteries and nerves. What is yours? If yours is wrapped around an optic nerve you could lose vision in that eye. My vision improved after surgery because of things were getting pushed around yet the adenoma did not directly touch the optic nerve.I know a woman who had her optic nerve practically encased by her adenoma and she did not lose vision in the affected eye. Yet I heard of another who's tumor was not close to the nerve but the surgeon slipped..so it is impossible to try and guess what your situation will be.

My advice: stay calm, and have your next MRI, have it read by a very good pituitary center, and take it from there. Know that you have support here and we can try to help you to understand things.
Horselip

Many pituitary adenomas can be removed transphenoidally (through the nose). But some, need to be removed via a craniotomy so that the surgeon can better see.