Pituitary tumors

Posted by robert25 @robert25, Apr 28, 2018

I’m 25 I have had 5brqin surgery’s were they had to remove pituitary tumors that kept coming back the first one started when I was 16yrs old my last one was recent which was this month I’m still recovering I been threw alot now I have to have radiation to make sure it don’t come back for good it’s called a aggressive tumor

Hello @robert25. Welcome to Mayo Clinic Connect. I'm sorry to hear you have had a long struggle with pituitary tumors. I bet that's been really tough.

Here is some helpful information that Mayo Clinic has out on the Mayo Clinic.org site- https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/diagnosis-treatment/drc-20350553
You may also find this discussion thread helpful to read- https://connect.mayoclinic.org/discussion/pituitary-cancer/?pg=1#comment-100751

What type of radiation therapy have you and your care team decided on?

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Hello @robert25. Sorry to hear that you have been through such a lot at only 25. My sister-in-law had an undiagnosed benign pituitary tumour for years when she was a young mother. Fortunately hers did not come back. It seems as if radiotherapy will be a good solution in your case because whatever is causing the repeated tumours can be zapped. Thinking of you and wishing you well!

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Yes I appreciate it they diagnose it as a aggressive tumor I have a five surgerys the tumors push on my optic nerve wish causes me blurry vision but I believe after radiology this tumor want come back no more im a strong believer in my god I stand on alot of faith cause this can be might depression for me seeing I had five surgerys within ten yrs five major at that

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@jamienolson

Hello @robert25. Welcome to Mayo Clinic Connect. I'm sorry to hear you have had a long struggle with pituitary tumors. I bet that's been really tough.

Here is some helpful information that Mayo Clinic has out on the Mayo Clinic.org site- https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/diagnosis-treatment/drc-20350553
You may also find this discussion thread helpful to read- https://connect.mayoclinic.org/discussion/pituitary-cancer/?pg=1#comment-100751

What type of radiation therapy have you and your care team decided on?

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Yes I appreciate it in yes five surgerys has been alot but god kept me this far I got faith in my god my surgeon jus now suggested radiology to get rid of it for good wit no return I meet wit my surgeon in radiology team to discuss my treatment plan I'm so open minded so if u had some suggestions I'm sure to take it all in thank u

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Ever since I was 4 years old, I've had anxiety really bad. I'm also a big hypochondriac. I've taken medication since I was a child. The medication has changed through the years, but for the past 3 years I've consistently been taking, [Invega, Buspirone, Benztropine, Zoloft, and Fluvoxamine].

When I was 18, I went to the ER complaining of visions problems, a loopiness feeling, and some other symptoms. I had it in my head that I had a brain tumor. They did a CT Scan as well as an MRI and didn't see anything. I stayed in the mental health unit for a week so they can sort out my medication.

Since I was around 15 (I'm 25 now), my body slowly developed breasts that are quite large. I've also gained a lot of weight. I never felt fully developed as a young man because I didn't grow body hair until about 2 years ago. about 3 years ago I noticed that when I squeezed my breast, milk came out. Now 3 years later, milk is coming out of both of my breasts.

I done research a couple of years ago on my symptoms and came across a disease called prolactenoma. I'm so sure that I've had this ever since I went to the hospital when I was 18, but they never found it.
I went to the doctor this morning and had my blood drawn. My prolactin levels are really high and he made me get more blood work that will come back in a week.

I read that almost all prolactin tumors on the pituitary gland are non cancerous. I worry about everything and I'm scared that the tests will come back and say its a cancerous tumor on my pituitary gland. Basically my questions are: If I have had a tumor in my pituitary gland all of these years, if it was cancerous, wouldn't I have known by now, being 7 years later? I'm sure it would have spread by now and I'd probably be dead, that is if it was cancerous. Correct?
So that leaves it at a benign tumor right? Which can be easily removed by surgery or even medication to shrink it right?. It's less worrisome if I know that it's not cancerous and can be taken care of.

As I mentioned earlier, I'm a big guy. I used to only drink soda and sweet tea. but for the last few months I've only been drinking water. I lost 50 pounds in those months. I can't help but be scared and say that what if I did have cancer, and that was the reason of my weight loss? I asked the doctor and he said it's because I drank only water and no sugar.

I'm just so scared that if it is a tumor, it's cancerous.

Also, for the past few months I've noticed it takes me about 10-30 seconds to start urinating. I told him that today, but he just said it's cause of my medication, which doesn't make sense because I've been taking the same medication for years without any problems. I asked what the chances of it being a prostate problem was and he said slim. (Don't forget I'm 25) What could that be?
I've also noticed my semen has been really watery the past couple of weeks.

Thank you for taking the time to read my story and questions, and I hope to get some positive feedback to help calm me down.

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