Monday, November 2, 2015

Pituitary Monday...

 (Catchy title, huh? ;) )

 And so, to actually talk about the subject of this blog and to answer a few questions. How did I get here? Where am I going? What can be done?



 How did I get here? 

 I had bloody discharge coming from my right breast. Fear sent me to the gynecologist, who referred me for all the necessary tests and also a visit with a breast surgeon.

 "I'm going to warn you," he said "This could be breast cancer."

 He should have added in that I wouldn't have breast cancer but would instead come away with a brain tumor....

 "Let me show you your ultrasound," the breast surgeon told me when I finally got in to see her. "Do you see your milk ducts? Do you notice that some seem bigger than the others? You're lactating. This obviously isn't normal since you're not pregnant."

 I was sent immediately for blood work, which showed a higher than normal Prolactin level. An MRI showed a 3mm tumor in my pituitary gland.

 Holy shit, I had a brain tumor.....

 I told the breast surgeon that I wanted to hug her when she discovered all this. It explained so much after I did some research. My facial hair. Weight gain. Anxiety. Antidepressants. My life for many years....

 Holy shit, I had a brain tumor! A Prolactinoma, to be exact.

Medication (Bromocriptine) was given that reduced the hormone level which was causing the lactating. It made me manic. I loved the amount of energy I had, which was not normal. I loved it while it lasted though!

 Even though my endocrinologist did a ton of testing, he did not have a good bedside manner. He would only speak to his tape recorder, which frustrated me to no end! I ended up getting a second opinion at UCLA, but they agreed with him and said the amount of testing he did was outstanding. Even my current endocrinologist was also impressed with how thorough his testing was.

 I ended up quitting getting treatment all together for this. I questioned my decision at the time but knew I had other issues to take care of. It proved ultimately to be a good decision in the long run. Not much had changed when I resumed treatment for it last year with my new medical group. My tumor stayed the same size and my Prolactin level hadn't jumped up wildly.

Where am I going? 

 My primary doctor has been on my case to continue the treatment even though I don't feel like it. I'm grateful for her, because I now see that it's affecting my mental health. One of my medications requires blood work, which actually showed that the medication was not effective due to my Prolactin level being too high. An actual connection between my tumor and my mental health? Yes!! I'm excited to see how things change with the change in my Cabergoline dosage. I'll report back! :)

 I need to continue treatment. I need to make my health and my life a priority. Getting my hormones in check is a priority.

 I've often wondered if I have Cushing's disease. I've certainly been tested for it and do politely advocate with the doctor to get the 24-hour Cortisol urine test done every so often. Joining online forums that discuss it sure helps me advocate more effectively with the endocrinologist. Most of the people in the group who were found to have it were diagnosed 2, 3, 5 years after being diagnosed with a prolactinoma due to it being cyclical in some cases. I don't want brain surgery, but I secretly do wish that this thing would just go the hell away sometimes.

What can be done? 

 I'm doing it. Otherwise though, advocate. People honestly are surprised when I tell them I have a brain tumor. Advocate and stay informed. We need to know how to advocate for ourselves and know what the latest treatments are.

 Coming next week: what a pituitary tumor feels like.....


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