Maci share’s her story of living with a pituitary tumour. She lives in America, so her experiences may be different to those who live in the UK.

I am in my twenties. I am a military spouse. I am a Labour and Delivery Nurse. I am a Doctoral student nearing graduation to become a Nurse Practitioner. I am a daughter. A sister. An aunt. A wife, niece, granddaughter, cousin, daughter-in-law, friend, co-worker, classmate, Christian, volunteer, Florida beach-loving resident. I am Maci, and I have a pituitary tumour.

Juggling “life” that consisted of: hospital shifts, required clinical hours, a mound of homework, volunteering, finding time for exercise, family, friends and hobbies, building a home. And navigating first time homeownership after the continual re-integration period following a year-long overseas deployment in my husband and I’s first year of marriage, in the midst of pandemic, who has time to keep up with routine appointments? Much less have time to have “check-in” with yourself and think about how you’re doing physically, mentally, spiritually, emotionally etc.

I had received a notification to make an appointment with my primary care provider for a yearly check-up, and was extremely close to tossing the note, and removing the “to-do” from my brain until I could find more time in my schedule. Either going within the next year after graduation, or until I felt I had a reason to seek any medical care (besides, I like to steer clear from scrubs and medicine in any free-time I can get!). For some reason I followed through and landed myself having a candid conversation with the primary care provider that I adore. She asked me how I had been feeling lately and noticed I had not completed my yearly labs. I was honest, and for the first time in a while reflected on the past few months of vague symptoms such as an increase in fatigue, headaches, slight menstrual irregularity and breast pain. At the time, I worked primarily night shift, and had for years. I blamed many physical symptoms on my work hours, along with stressors that come along with being for example a student, nurse or military spouse.

Even though I hadn’t completed my labs, I reassured her I was fine and that I would monitor my symptoms and see her next year. She urged me to complete the lab-work, reassured me that it did not require fasting, and that hormones or other findings in the blood may be to blame for my symptoms. Reluctantly, I completed the panel that day which included testing a blood prolactin level.

For context, prolactin is a hormone made by the pituitary gland in the brain. It is responsible for breast growth and development, milk production during pregnancy and after birth, along with other actions needed for the body to maintain homeostasis. Prolactin levels are normally high for the pregnant and postpartum population, and low for non-pregnant individuals and for men.

Before the day ended (Wednesday), I received a call from my primary care provider that my prolactin was at a level consistent with someone that should be pregnant or breastfeeding. I have never been pregnant or breastfeeding. Although the plan was to re-check the level, I could still sense the urgency in her voice when she then shared that she has placed an order for a STAT MRI of the brain and pituitary gland, and that she wanted me to complete the imaging before the end of the week.

She of course mentioned before ending the phone call to try not worry, however, knows that my current studies and work experiences leaves me anything but naïve to what news may come next. One more night shift stood between myself and my weekend, and I wanted distraction from a racing mind more than anything.

The stars aligned and I was able to schedule my MRI for Friday morning after getting off of work. I had never experienced first-hand the noisy, uncomfortable, lengthy, anxiety-provoking scan before, and I was grateful to have just finished a night shift so my body was able to naturally enter a more relaxed state with every passing minute before I could get home to bed.

Just hours later, I awoken to a phone call from my primary care provider on her personal cell phone. I took a breath and answered. My scan revealed that I had what looked to be a 4-6mm adenoma, or tumour, on the anterior pituitary. Because blood prolactin levels were greatly elevated as well, these findings were consistent with a prolactinoma.  

I had no words. When hearing the news, thoughts due to shock seemed to simultaneously come to a halt, yet also scream “So what now?” “Do I need brain surgery?” “But I’m so young.” “But I only went to my primary for an annual visit, how is this even happening?” “I guess of any tumour news, this is a better type of tumour news.” “Is it going to take long to be seen by a specialist?” “Why me?” “I’m sure something good will come of this.” “Will I be able to have children?” “Will I be able to breastfeed?” “I don’t have time for this.” “How long have I had this tumor for?” “What would have happened had I not gone to my appointment, and come back next year?”

It is as if she read my mind when she proceeded to explain next steps. I was to see a local endocrinologist soon, and likely begin medication to help lower prolactin levels, and work on shrinking the tumour.

I became established with an endocrinologist within two weeks and began cabergoline. Due to medication side effects and prioritizing my overall health, I began working less night shifts. I had appointments for regular bloodwork, medication check-ins, repeat brain scans, and vision tests in between other commitments. This was my new normal.

Immediate family became aware, but I had been hesitant to share with others. “It wasn’t cancer, right? I shouldn’t be worried, or need to share.” “It’s so rare, there’s probably no one else I know who is going through this.” “There are so many unknowns that there is no point in sharing because it will just make me more anxious.” With friends, co-workers, or classmates for example it is also only natural for them to ask, once sharing something like this, about the “what now,” and “what does the future look like?” The hard part is, there is a continual feeling of uncertainty even today as I write this 1 year later.

I am happy to report shrinkage, and lower prolactin levels since beginning Cabergoline treatment. Had I not gone to my appointment that day, and allowed more time for tumor growth, I may have had a different story to tell. We have not yet tried to conceive, and with time have come to understood possible future implications of a prolactinoma such as effects on fertility, vision, and overall well-being. I simply do not know if I will undergo future surgery, struggle with infertility, go on to have healthy pregnancies, be able to breastfeed, have to take lifelong medication, or monitor this forever. But I am not without hope.

This diagnosis has led me to choose gratitude along the way. Gratitude for how quickly my primary care provider acted in this scenario. For how competent her and other members of my healthcare team have been. For the treatment options that I have. For the ability to truly exercise my faith and place this situation in bigger hands. For my support system. For others who share in diagnosis or have a similar story. For my life and my health.

To reiterate, within 48 hours of my routine, annual primary care and wellness appointment (that I almost didn’t go to), I received news that I had a brain tumour. If anything, I hope this story causes someone else to not feel so alone. I hope this story urges others to make that appointment you’ve been putting off. To see your primary care provider regularly. To get your preventative screenings. To count your blessings. To listen to your body, and to advocate for yourself. No one knows your body the same as you do!