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Life With a Tumor – My Prolactinoma Journey

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Please note, I am not a doctor so this post contains information not meant for medical use and simply contains my experience having a prolactinoma.

You have a tumor in your brain. Sounds scary, am I right? Well, here’s my story of how I found out about my tumor and why I now encourage everyone to go to their doctor more frequently!

In early 2019, I was diagnosed with a prolactinoma. Basically, a rare benign tumor in my pituitary gland. Trust me – I had to lookup what exactly the pituitary gland was as well so I’ll save you the trouble. In a nutshell, the pituitary gland is a pea-sized gland that controls almost all hormones in your body. 

prolactinoma

So, how did I know something was wrong? Here were my symptoms:

  • Lack of menstrual cycle
  • Severe mood swings
  • Anxiety through the roof
  • Weight gain (we’re talking almost 100 pounds over the course of a year)
  • Irregular body and facial hair growth
Something is not right!

I finally went to a doctor after no menstrual cycle for about 6 months. The doctor simply checked to see if I was pregnant as that was the only solution she could think of. For context, there was no way I could be pregnant due to other factors so I knew something else was going on. I was angry at the doctor for not listening to me so I, quite frankly, was stubborn and figured I just needed to lose weight and everything would be fine. 

After hitting the highest weight I had ever been in my life and not having a menstrual cycle for almost 3 years, something was absolutely not right. I finally caved, found a new doctor, and followed through with the appointment. 

Time to See a New Doctor

I was referred to my new doctor by a co-worker and had very low expectations. I had convinced myself that she would suggest I was pregnant, just like the last doctor. Thank goodness I was wrong. 

We – the life saving doctor and I – had come up with a few options of what was happening inside my body. We ran some normal blood tests but added in some hormone tests as well. I was convinced at this point that I had PCOS (Polycystic Ovary Syndrome) however, when my doctor called me back in to discuss my blood test results, she said something that changed my life forever. 

You need to get an MRI done of your brain. I think you might have a tumor in your pituitary gland called a prolactinoma. 

I’m surprised I didn’t pass out when she said those words. An MRI?! My BRAIN is causing all this? TUMOR!?! What the heck is a prolactinoma?! 

My doctor walked me through my blood test levels, which were off the charts wacky. A few of my hormone levels were double and TRIPLE the “normal” levels they were supposed to be at. 

I didn’t know what to think of all the information I received but I booked my MRI for the same afternoon. 

Receiving My Diagnosis

About a week after my MRI, I was officially diagnosed with a prolactinoma. I will never forget being at work and proclaiming, rather excitedly I might add, to one of my co-workers that I had a tumor in my noggin’. While she was in shock and showed extreme concern, I was happy. I finally knew what was wrong with me and better than that, I could come up with a game plan to get better. 

My tumor, which my friends and I now lovingly call “Richard”, had been slowly growing for some time. It measures out to 6mm (for perspective, that’s smaller than a dime but fairly large in comparison to the small-sized pituitary gland where it has taken up residence). Had it been just a little bit bigger, I would have had to remove it via brain surgery.

So, where am I at now in this benign brain tumor journey?

I’m on medication twice a week now. I’m feeling better than ever but still working on restoring my self-image and confidence (imagine what having very wacky hormones will do to your self-esteem) and losing the weight that I packed on. 

I hope that my journey with this helps put things in perspective. If you’ve known me personally, I hope this helps explain why I am the person I am nowadays. If you don’t know me personally, but you have someone in your life who is going through something difficult, similar, or is just not acting like themselves, reach out to them. 

Most importantly, if you are going through something similar, or you’ve been diagnosed with a prolactinoma, reach out to me! I would love to talk about your experiences.

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Journey with Bre

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2 COMMENTS

  • Andi

    Good for you for going with your gut instinct about getting another doctor. I just dealt with something similar, I knew something was wrong but my old doctor just brushed me off. It really hurt, as I loved her and she was my doctor for a couple of years. I found a new doctor who actually listened to me and through some testing, we discovered that I have PCOS, which is why I haven’t been able to get pregnant. Although the diagnosis was hard to deal with, I’m so glad I found her. Go with your gut people! You deserve a doctor who will listen to you 🙂

    • Bre Martin
      AUTHOR

      Thank you for sharing your story! I’m glad you were able to find a doctor that listened to you. PCOS is a hard diagnosis since there is no “cure” but I’m glad you found out what was going on and can now, hopefully, manage your symptoms!

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