Tumor on the pituitary gland, please take the time to read this as I am completely scared?

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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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3 Replies

  • Posted

    I am a female and live in the US. I have been diagnosed with a pituitary tumor since 2014. I was on Cabergoline and then in 2017 I had a transphenodial surgery to remove my surgery and it was fairly successful although there is part of it still left on the stalk of my pituitary gland. I am back on cabergoline my prolactin levels last time I went to the doctor are around 80, my Dr. Says 25 or under is normal. My prolactin levels before surgery were about 150 to 200 and when I first started seeing my Dr it was closer to 500. I do not have any vision issues anymore since on meds. I have also developed a thyroid issue I don't know it they are connected.

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  • Posted

    I too was diagnosed with a prolactinoma back in 1999. I had breast discharge and thought I had breast cancer but after blood tests showed my prolactin was elevated the Dr decided to try meds first to see if it could shrink the tumor.  I was put on Parlodel (or bromocriptine) both are the same. And after a few months the breast leakage stopped and my levels went down to 27. After a few more maths my levels fell below 25. The level my Dr wants to keep it under.  I used to get barometric headaches back then but no more. And as for my vision. It’s gotten worst due to age. Need reading glassses is all now. I too was scared when they first told me and I didn’t have a lot of internet access back then. I was only 29. When they discovered my tumor. They also found out I had a low thyroid then too. I didn’t feel like I had any symptoms of that accept fatigue. My fatigue has never improved since I’ve gone on to have a lot of surgeries for other unrelated issues. Spine surgery 4x. And two knee surgeries. I’m on pain management now so those meds keep me tired. But for my whole life my pituitary tumor has caused me the least or even no trouble at all. Don’t be scared. I’m sure meds will help shrink your tumor. It did mine. Good luck and keep us informed as to how you’re doing. 
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  • Posted

    Pituitary tumours are almost never cancerous, you have a better chance of winning the lottery.

    At 25, the chances of anything being wrong with your prostate are almost as low. Starting to urinate requires subconscious relaxation of the urethral sphincter: if you are anxious, that can take a moment and the more you worry about it the more difficult it gets. So get the tap/faucet going in the background: the sound of running water works a treat biggrin

    Sodas are a disaster for weight management so the fact that you changed to plain water explains a lot. Minimise your sugar intake and avoid anything that contains high fructose corn syrup.

    Ask your doc to do a blood test to check your testosterone levels - these is controlled by your pituitary. Thyroid and cortisol blood tests are cheap and easy to do - also under pituitary control.

    The big problem experienced by most people with pituitary disease is getting the problem identified. Your GP/PCP will see on average just one in a career and you are it! You have passed that gateway and are on your way to resolution. There will be bumps and potholes on the way but you are getting out.


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