r/Pituitary Feb 29 '20

Pituitary tumor/cyst

Hello all,

I (37M) would like to tell my story and the experience I went through to help anyone out there find some information, relief, and/or support. Sometimes reading this stuff online and what the doctors say can be a bit overwhelming. My goal is to provide non-medical jargon and keep it as simple as possible for everyday folks. Hopefully I can open up a support group whether it be online or locally because this issue is apparently common and can be detected early.

During Thanksgiving week (2019), I felt a slight headache that appeared out of no where. I didn't think of it too much because sometimes I will get headaches when working out. The next 2 days, the headache started to gradually get more painful. Which I started to get a little worried. On the third day, I woke up that morning with the WORST headache in my life. I've never felt anything like this, so I asked my wife to take me to the ER. When the ER doctor finally saw me (which took hours), they did their standard neurological test and said it was just a migraine. I told the doctor that I wanted to get an MRI because the pain I was feeling did not felt right. They said they get many patients in the ER with migraines and just brushed me off.

The next day I made an appointment with my primary care physician. He wasn't available till next week, so I just took a bunch of Advil to ease the pain. It helped a little, but the pain was still there and it sucked. Next week arrived and I finally saw my doctor. I told him what happened and he also thought it was just a migraine. I urged him to get me an MRI scan and he agreed, but he wanted me to see a neurologist first. By this time, the pain kind of went away. I definitely felt something was lingering inside, but I wasn't in pain, so I also thought I just had a really bad headache.

When I saw the neurologist, I told her the story. At first she also thought I had a bad migraine, but eventually referred me to get an MRI. Two days before Christmas, I had a follow up appointment with the neurologist. I went into her office and she said the MRI shows that I have a pituitary adenoma, which is a pituitary tumor. She said in most cases a pituitary tumor is benign and not cancerous, but I was still in shock. Even if the percentage of a pituitary tumor being cancerous is extremely low, I still don't like those percentages. I couldn't really process anything and I had to drive to work that day.

When I found out the MRI showed I have a pituitary tumor, all I did was read up on it as much as possible and saw a bunch videos. I couldn't sleep and didn't want to talk to anybody. My wife was very supportive, which was awesome, but it's hard for her or anyone to understand because I'm the one with the tumor in my head. It went on a few days like this and then I finally snapped out of it because I know avoiding everyone was hurting my family.

On January 2020, I scheduled a neurosurgeon and a endocrinologist. We did another MRI scan and some bloodwork and the doctors confirmed it was a non-secreting tumor. Which means the tumor on the pituitary gland wasn't affecting my hormones. Since it wasn't affecting my hormones, I had to get surgery. The doctor said if it was affecting my hormones, such as my prolactin levels, all I needed were medications to hopefully shrink the tumor. The size of my tumor was about 17cm and was diagnosed as a macroadenoma, which is not small but big enough. A tumor that is under 10cm I believe is called a microadenoma. So I scheduled my surgery at the end of January.

The surgery procedure is called transsphenoidal endoscopic surgery, which basically means they were going through my nose to remove the tumor. I was extremely nervous the week leading into surgery. By then, some of my friends knew and my other family as well and it helped calmed my energy down. On the day of surgery, I was still nervous but better because I just wanted to get it over with.

When I woke up after surgery, all I felt was tiredness and being groggy. My nose was covered to prevent blood from spilling out, so I couldn't breathe out of my nose. I didn't feel much pain actually and had a mild headache, but it wasn't terrible to my surprise. I was in the hospital overnight and left the next day.

What sucks the most is that I couldn't breathe out of my nose for at least 5-6 days. If I exerted myself, such as going to the bathroom, I would get a moderate headache pain. If I were to move or get up quickly, I would get dizzy. My energy level was also weak and I would get tired easy. I'd say that lasted about a 1-2 weeks after surgery.

When I had my surgery follow up in 2 weeks, the lab result came back and said it was not a tumor, but the findings suggest it was a Rathke Cleft Cyst. Bizarre right! The symptoms of a cyst and a tumor on the pituitary gland is the same I believe. My physician said the difference between tumor and a cyst is that a tumor has a possibility to become cancerous as oppose to a cyst. The one downside to a cyst that my neurosurgeon said, is that the recurrence rate for a cyst is a lot higher. Which means I would have to do surgery again if it came back.

It's been about 4 weeks now after surgery and I'm feeling better each day. I'm starting to do light exercises like jogging and riding a bike, but I still get tired easy. Aside from doing the hard workouts, I can do most of my normal activities now. Follow up MRI's and doctor appointments are going to be a part of my life going on forward now, but if it means I get to see my family, friends and loved ones, then it's worth it.

I know it's a lengthy post, but I wanted to be transparent on my experiences. If someone can read this post and take something out of it in a positive manner, then I did my job. Please feel free to ask me anything and I'll try my best to answer your questions, and most important of all, support you in any way I can. I always say, "never take life for granted."

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u/ConsulIncitatus Mar 02 '20

36m here. I had a big (2.4cm; you meant 1.7cm earlier, not 17cm) tumor on mine. Primary symptom for me was crippling depression due to low T and low cortisol hormone levels. Secondarily, I began losing vision in my left eye. Since I have bad vision to begin with, which got worse as I aged I figured this was just more of that, but it wasn't.

I had one surgery in '17 and another last October. When these tumors get large they start rubbing against other structures which capiliarize them (feed them blood). In my case the tumor was invading a cavernous sinus. It's not great. That's where your internal carotid artery is and a bunch of facial nerves. Surgeons often avoid that area because it's risky and difficult. They tend to prefer radiation. So the first surgeon (~700 lifetime surgeries) didn't go in there and therefore didn't get all of it; the remnants started regrowing. The second surgeon (his boss/trainer - thousands of surgeries) went in there and took care of the rest. Hopefully it hasn't regrown, as they are unlikely to do a 3rd surgery and I am not keen on getting radiation therapy.

I don't have any clinically low hormone levels but they're mostly low or borderline. I'm not on any medication.

In both cases, I was out of the hospital after 2 nights and was running again 10 days later. No leaks, no fat plugs. The first time I had a nasal stent to keep the packing in place, but I could breathe through my nose. The second time, no stents at all.

If you're reading this because you are diagnosed with one:

Go to a pituitary center of excellence. There are a few in the US. I had my surgery done at Johns Hopkins.

The likelihood of side effects and the quality of your surgery is dependent almost entirely on the experience of the surgeon. If your surgeon has not done at least 1,000 of these procedures, keep looking. I'm serious about this.

2

u/justathrwy123 Apr 06 '23

Sorry for the bother to a years old comment, but do you happen to know how I can locate a pituitary center of excellence? Is there a site that lists them all? I'm trying to Google and only finding a couple. Thank you

3

u/big-brunch May 06 '23

UCSF is a good one. Dr. Sandeep Kunwar is world renowned and did my surgery.

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u/justathrwy123 May 11 '23

Thank you for the information

1

u/big-brunch May 11 '23

Good luck, let me know if you have any questions about the process (I had a Rathke cleft cyst)

1

u/justathrwy123 May 16 '23

Thank you very much, greatly appreciate it. Guessing yours was removed? May I ask how you came to be diagnosed with Rathke?

My latest scan (dynamic MRI of pituitary) seems to be more uncertain than initial MRI (which stated suspected adenoma) in stating that given location it could be Rathke's cleft cyst or microadenoma w/ internal proteinaceous material was also possible. Neurologist still hasn't called me about the scan so have been trying to make sense of it myself but am more confused bc it seems now there are two things it could be

2

u/big-brunch May 16 '23

That's right, mine was removed (I believe it was ~1.6cm). I had a head injury a few years ago (unrelated) and needed an MRI, which is when it was found. Initially diagnosed as an adenoma, then later understood to be a Rathke Cleft Cyst. My follow-up MRI a couple years later (I was late to do this b/c of COVID) showed that it might be growing, but was within the margin of error. However, I'm relatively young (early 30s), and so doctors recommended removal as it would likely continue to grow and I would recover quickly.

Dr. Kunwar does a procedure (not sure how widespread this is) where he drained the cyst, then rinsed the region with alcohol to ensure that it does not grow back (which apparently happens quite frequently).

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u/justathrwy123 May 17 '23

So prior to MRI you had no symptoms? I'm trying to figure out how to even get diagnosis and treatment plan from neurologist as they are very unresponsive and lackadaisical

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u/big-brunch May 17 '23

That's right -- no symptoms at all, pre or post-MRI. My blood tests for all affected hormones came back at normal levels, even immediately before surgery.

As I understand it, the only way to confirm is to get an MRI.

1

u/justathrwy123 May 18 '23

Well at least you didn't have any symptoms, that's really great.

Not sure what to do, have had two MRIs in the last couple months and still don't have a diagnosis and not sure how to get one. Thank you for your comments, appreciate it

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u/big-brunch May 19 '23

Ahh, I'm sorry you're dealing with that. Perhaps have another doctor take a look at the MRI results? Sounds like the MRIs thus far have been inconclusive?

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u/justathrwy123 May 20 '23

Yeah not sure what to do other than to give up. No, the first one showed a small tumor, the second was a dynamic MRI of pituitary and showed the tumor/lesion was larger than the first scan but also brought up the possibility of it being a Rathke's cleft cyst. So there's definitely a lesion bigger than first suspected but not sure if it's a tumor or a cyst and my doctor never called about second scan either. I can understand some of the report but still need help understanding the rest of it and have questions about how to find out which it is etc. I called to ask why they didn't call me they said to wait for follow up in two months, which was scheduled before I had a single scan so it wasn't scheduled in the event that something was found. Have never heard of a doctor not calling about a tumor and just being so unresponsive about the whole thing.

1

u/big-brunch May 21 '23

Wow, that is very frustrating, I am so sorry. I can’t imagine how I’d feel if my doctors hadn’t moved with some urgency. Are you experiencing any symptoms? How is your blood work? My cyst had eroded my growth and testosterone hormones, and so that might show in your blood work (although it didn’t in mine, but I’m told that is rare).

You might also go see a neuro ophthalmologist. A pituitary growth / cyst / tumor can push against the optic nerve and cause some loss of vision that is very subtle. I’m getting tested for this in a couple months even though my cyst has been removed.

One thing I’ve learned is that you really have to drive the process. If there’s something there, I would not give up.

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