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Pituitary tumor: Share your experiences, side effects, recovery, etc.

Posted by lukekee (Vivian) @lukekee, Nov 28, 2025

Hello! This is long so I appreciate anyone who reads and replies.
I want to hear from other people that have/had a pituitary tumor and their experiences with symptoms, surgery, recovery, etc.
Diagnosed in October by MRI and have an appointment with a neurosurgeon in December.
I want to know if surgery relieved your symptoms. I have a lot of symptoms that my endocrinologist says are likely from the tumor.
Symptoms:
Extreme sweating (not hot flashes)
Extreme fatigue
Joint pain
Head/Body aches
Zero and I mean zero energy
Weight gain
Nausea
Dizziness/vertigo
Itching
Mood swings
Sleep issues
Brain fog
High blood pressure
I should mention I have been going through menopause for about 8 years but Drs tell me I should not be having such severe symptoms for so long especially since I was on HRTs for all those years and just went off them in September.
My quality of life is horrible. I never feel like doing anything.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 4 days ago
In reply to @mrcudel "I found out I had this tumour by accident after an MRI for lymphoma in 2021,..." + (show)
Profile picture for mrcudel @mrcudel

I found out I had this tumour by accident after an MRI for lymphoma in 2021, and since then the health system here in Quebec is super inadequate to treat patients. I was told on October 2025 that my mass would be removed after the holidays, here we are 15 June and I haven't heard a peep from none of them. I has another MRI in April and the mass is now 15 x 24.5x 17mm I'm having headaches, eye pain, sleep problems, can't sleep during the night I spend my days sleeping from the headaches. I forget things, when I say I forget things I do maintenance in a restaurant I had to instal a water line outside but forgot to turn on the water to fill the tank. So now boss wont let me do things that are for skilled person, I told my family doctor but no further ahead, personally I believe that they want it to get worse then the feed me pills for the rest of my life. why not just give me a suicide pill and get it over with. There should be a law that prevents doctors from ignoring you. my vision is affected double vision, blurred vision, dizziness then its eye pressure headache starts all over again. I am tired and by what I read here doesn't seem to be an answer. But thank you for mentioning your symptoms and what is to come. I ain't getting any answers from my team of specialist ha ha ha ha sure they are.

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@mrcudel, long wait periods for treatment are stressful. But extended periods with no answers is unacceptable. If you would like to consider a second opinion at Mayo Clinic, you can request an appointment as an international patient. https://mayocl.in/1mtmR63
Note: your provincial health plan likely will not cover costs.

A cancer social worker may be able to help navigate appointments with you. It is hard to do this on your own, especially when you are dealing with difficult symptoms. Learn more from this article:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Can you ask for an appointment with an oncology social worker at the cancer centre where you were treated for lymphoma?

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