49m My symptoms came on slowly. I had headaches for years, fatigue, depression, brain fog, weight gain, ..etc In late 2018, my prolactin test showed >1000 mg/mL. So I was sent off to get my MRI. I asked for the CD of the imagery when I had the MRI done. I went home and started looking at the imagery, compared to normal images, yeah I saw a crazy mass there. I knew I had a tumor. My brother had brain cancer when he was four. Initially I was concerned that I wouldn't be there for my wife and children. Then I read that a very small fraction of these tumors are cancerous so I was pretty relieved as the odds were greatly in my favor. I showed the imagery to my wife and children and talked to them about it. It was exciting to have a reason for my symptoms and knowing that it wasn't going to kill me was good.
The doctor called my up a few days later when my children were in the car, he asked me in a super sheepish voice to come in for an appointment (so he could break the news). I then asked him if the appointment was for my tumor and then I explained I saw them imagery and read about the tumors and eat I going to see a Endo b it a neurosurgeon. He was totally stunned, a little disturbed that got the imagery, but he was relieved that he didn't have to break it to me. He told me he was referring me to a neurosurgeon. I asked for the radiologist report so I could review it. He said sure, and I went and picked it up from his office.
I read the report, it said that I had a 3.3cm x 3.2cm x 3.1cm tumor and my optic nerves were displaced and compressed. I read up on all of this. I found people had bigger tumors and recovered, so I said yup myself "I got this". I waited a few weeks for that appointment.
The neurosurgeon was pretty laid back. He explained to me that he reviewed the imagery and my optic nerves were displaced, but my optic nerves were not compressed. My tumor had found its way into the cavernous sinuses. So he referred my to an endocrinologist and a neuroophthalmologist.
I set up my appointment. I got a call that I was being sent off for labs prior to my appointment. I got into see the endocrinologist after about a month. I went in and had fellow endocrinologist and a veteran endocrinologist. These two women were funny, I got trolled a bit and they were clearly very smart. I was sent off for more tests. More blood work, a diluted prolactin test and an ACTH stimulation test. The prolactin test came back as 5250 mg/mL, I read up on that, people have had much higher levels and recovered, okay cool. My ACTH stimulation test was an experience. I was bouncing off the walls, my energy levels were crazy high, afterwards I was walking really fast, taking really fast, and I could not stop.
I learned that I had a prolactinoma. That tumor caused me to have low testosterone, secondary hypothyroidism, and secondary adrenal insufficiencies (Addison's). Well all three of those things explained pretty much everything. I was put on cabergoline to stop prolactin production and shrink the tumor. I was prescribed levothyroxine to feel with hypothyroidism. Finally i was placed on hydrocortisone pills for the secondary adrenal insufficiencies.
I saw the neuroophthalmologist and all was fine. Clearly the neurosurgeon in my case was correct. Within a few months, my headaches were gone and I started to see improvements. I negotiated dropping the hydrocortisone add it made me too edgy.
At the 6 month point of treatment my prolactin came down into double digits and I started to feel different. I put myself on a low carb diet.
At the 9 month mark, my prolactin was in the single digits, testosterone was in the normal range, and I lost 60 pounds. Doctors were blown away. The tumor shrank by 30%. My cabergoline dosage was increased. I started to feel some "stress" related to the testosterone increase and an uncommon dude effect to cabergoline, hypersexuality. I coped by dumping that stress into exercise. I'm married and my family is VERY important to me.
At the year mark the continued to improve. I had lost 95lbs and my body shape changed a lot. The endocrinologists and my primary care physician all told me to stop losing weight. My PCP told me I was eating enough. I brought up that I was still overweight according to BMI, her response was that BMI didn't apply to be anymore due to muscle mass. I was developing a strong V shape at that point with lean muscle mass. My cabergoline dosage was increased.
After that, I started to have different problems in the office. I was being pulled aside saying and being told that I "look great". Most of those interactions were kind, curious, and caring. Not all though, some were unprofessional and should have been reported, but I'm a guy and the HR department isn't there for me. I actually left my prior job in 1997 because of harassment from a female boss with her female boss protecting her, even after the next guy l left for the same reason. I took that stress and dumped it into exercise. I noticed more changes in the office, blushing, stolen glances, and other flattering behaviors. Then I ran into the exec over HR, elevator eyes every time I ran into her. I talked to my boss, he got mad at me for telling him about it. As it turns out his wife works in HR, so he was worried about his family. My wife had become insecure as I told her everything. She asked that I stop telling her she what I was seeing. I could not tune it out and I could not vent. My stress levels went up. At the year and three month mark. My weight stabilized, but my shape continued to change. My endocrinologists heard my stories and started to share that these transformations are rare. Most often men that go through this have affairs, run their marriages and careers in the process as they break policy. I was determined that wasn't going to be me. I ended up seeing a therapist. Then covid hit. I felt completely in control of myself, but i knew I could not control others.. I also picked up biking at an exercise as another coping mechanism.
At the year and six month mark I learned my tumor was not shrinking and in fact was growing again. We scheduled surgery. On October 4 I biked 70 miles, on October 6th I had surgery. They took out as much of the tumor as they could without riding complications. They had to leave a large mass in the cavernous sinuses. I'm still taking cabergoline, I might have to use radiation at some point. While recovering I learned that my heart rate is low, like it drops below 45bpm when I sleep. The cardiac technicians told me I now have runner's heart. I was working from home three days after surgery and nobody could tell on video chat that I was recovering. Seven days after surgery I drive to work and was back in the office. I lost respect for my boss, and my employer I continued to go to work, but my heart wasn't in it. I tried to shift to another group, but was blocked. I had some more issues at work and realized I had to find a new job as I could never be comfortable there again. I got a phone call from a woman that I trust and she asked that I come work for her at a different company. I took her up on her offer. I quit my old job after 23 years, but I have a new job. I'm still decompressing, but I'm feeling better. The lady that hired be told me that if I have any problems to just let her know. I believe her
Medically I'm doing very well. Mentally I feel stress and anxiety. Some attention is fine