× These pituitary tumors (also called adenomas) secrete excessive amounts of prolactin and are the most common type of pituitary tumor seen clinically.

Living with a Prolactinoma for the past 5 years

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Replied by carolk on topic Living with a Prolactinoma for the past 5 years

Hi There,

I am not a medical professional, but what I know about prolactinoma is that medication is usually the first line of treatment because it can control the hypersecretion of prolactin and growth of the adenoma and in some cases shrink the adenoma. Having said that, not all patients can tolerate the medication due to side effects that decrease their quality of life, which sounds like your situation. Mood changes and depression are not uncommon with high prolactin levels, too. Pituitary disorders are complex and need a pituitary specialist that treats many pituitary patients. Not all endocrinologists are the same, most treat the more common endocrine disorders like diabetes. I've included PNA'S list of known pituitary specialists below: 
Seeing an endo that is affiliated with a pituitary center is ideal because they have a multidisciplinary team of pituitary physicians that will all consult together to come up with the best treatment plan for you. They include neuroendocrinologists, neurosurgeons, neuroradiologists, neuropathologists to name a few.  I've attached the link to PNA'S list of hospitals with pituitary programs:  pituitary.org/medical-resources/hospitals

I can't stress enough how important it is for you to see a specialist. The fact that your adenoma had shown growth on your last MRI would seem to warrant a closer look into what your next steps should be. A second opinion never hurts. 

Also, PNA moderates a closed Facebook support group for pituitary patients: Pituitary Network Support Group . You have to request to join and once you are a member your posts will only be seen by people in the group. Sometimes it helps to hear other patient's stories and be able to share yours in a safe environment.

Lastly, do your research, become an expert about your disorder. Knowledge is power, and it empowers you to advocate for yourself.   Best wishes on your journey!
2 years 1 month ago #10772

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Living with a Prolactinoma for the past 5 years was created by jessi_lynn

I’m a 27 year old female. A little over 5 years ago I approached my OBGYN about the discharge coming from my breasts. He had blood tests done, prolactin levels were high, yada yada.  I began to see an endocrinologist and I had an MRI done. Nothing at the time. Either way, I was still to be monitored and put on cabergoline. Finally, 3 years ago, they found a Prolactinoma and nothing changed. Just my doctor testing different doses of cabergoline. I’ve had horrible side effects, ones that have affected my mood specifically and I already had a could mood disorders, so finally, she agreed to try to take me off. Going off has been horrible though because of the dopamine withdrawal. And now my breasts are leaking  again. 

She really really doesn’t want to perform surgery. Every time I bring it up, she acts as if it’s not an option. I get it. Surgery isn’t ideal, but my life is suffering. I’m missing work, missing my social life, it’s extremely stressful. The microadoma is 7mm as of last December. I’m due for another MRI in a couple months, so we’ll see what comes of that, but she didn’t seem concerned when it grew from 6 to 7 mm. 

I am in the process of looking for another doctor, but insurance sucks right now. Anyway, I guess I just wanted a place to vent/look for any potential answers. My family is very supportive but I know it’s hard for them to understand everything
2 years 1 month ago #10771

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