Pituitary tumors are not uncommon. In fact, up to 1/4 of brain tumors are pituitary tumors. These tumors are almost always benign, but can cause a wide range of symptoms depending on whether they are functioning (secrete hormones) or nonfunctioning (don’t secrete hormones). Symptoms depend on which hormone is being oversecreted and/or what structure(s) the tumor is pressing on, such as the optic nerve or pituitary stalk. Simple blood tests can be indicative of hormone oversecretion. Imaging, specifically MRI, can determine with certainty the presence and size of the tumor.

Once you get the diagnosis (and even that can be a battle of wills between you and your physician), there are medications, surgery, and radiation to treat the tumor. And that’s all well and good.

But one thing many doctors ignore completely is the effect having a tumor can have on a patient’s mental health. Due to the way our healthcare system functions, you instead have a large group of patients feeling ignored, degraded, put down, and otherwise forgotten by the very healthcare system that is supposed to heal them.

My surgery to remove my own pituitary tumor a year ago was very successful. The whole tumor was removed and I didn’t have any of the normally expected post-op issues, such as diabetes insipidus (DI) or a CSF leak. Once my surveillance MRI in April came back clear, my neurosurgeon, for all intents and purposes, washed his hands of me. The extreme fatigue I felt? Not related to the surgery. The continuing headaches? Go see your neurologist. The fatigue is what initially kept me from returning to work. And this was not normal fatigue. This was a do-one-load-of-laundry-then-sleep-for-12-hours fatigue. It didn’t make any sense. But it happened.

Then, in January, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). When I asked my neurosurgeon about it, he said he’d never had a patient diagnosed with it post-op. My POTS specialist told me that POTS is more common in individuals with pituitary disorders than in the general population. So did the tumor cause the POTS? It may have certainly contributed to it. Either way, I can’t work anymore. I’m less functional than I was prior to my surgery. And the inability to work or function normally made me seriously depressed and anxious.

I’m not the only one whose mental health has been affected by issues with a pituitary tumor. The following are quotes from individuals from around the world with pituitary tumors when I asked them to comment on their mental health. These are, of course, used with permission.

The Effect of a Serious Medical Condition on Mental Health

• “Feeling unwell so often and knowing I may be like this for years (or forever) causes some of it, and I think some is caused by the tumor itself. My mind and thought process has been different for years.”
• “Anxiety-anxiety about tumor recurrence, a moment of clumsiness and wondering if my symptoms are recurring, anger and frustration with the med industry in general.”
• “I have a lot of anxiety and am slightly depressed. I don’t have the energy or the joy that I used to. I believe it is partially due to the tumour and endometriosis and partially due to the meds to treat both. Vicious cycle.”
• “I was always a go getter, busy, worked full time as a teacher and could still go part time as the assistant band director and still have energy at the end of the day. Vision loss and extreme anxiety plagued me the few months from diagnosis to surgery of my nonfunctioning macroadenoma. Now afterward, I’m on hormone & high blood pressure medication and my glucose keeps rising so probably meds for that too! I’m so physically and mentally drained each day I wonder if I should leave the high paced world of teaching for a job I wouldn’t love just to feel better…then that makes me depressed! I was always on the ball but now characterize myself as a hot mess! But YES– it’s so hard to find the new you when you want to go back to the old you so bad but you’re totally different in so many ways you know you’ll never be able to.”
• “The part that makes me feel like I am not me anymore is the apathy and the changes in my body. I feel disconnected from everything and when I look in the mirror, I don’t recognize me.”
• “I refer to my self as either pre surgery or post op as my life changed completely following surgery. I went from being healthy (besides the non functioning macroadenoma) and on zero medication to complete hormone replacement. I hate having to rely on taking medication to stay alive, but I try to remind myself and give thanks to God that it was benign and that there is medication. I have good days and bad days, but I’m trying to stay positive (more so for my husband and small children). But it is oh so hard feeling like the life I once had is over!! I feel like a burden to my family now and not like the mother I once was.”
• “Definitely anxiety..worried that after 2 surgeries..the tumor will grow again and need another surgery or radiation..which could compromise my hormones.”
• “This has been the hardest year of my life. I’ve had so much trouble with my mental health and identity since. I started seeing a therapist last week.”

The Effect of Fighting Doctors on Mental Health

• “It took them 2 years to discover after a long road of visits to GP with numerous symptoms being patronised over and over again, sent away with antidepressants and painkillers and the only anxiety was caused by no one believing me or getting to the root of the problem. Endless changes. But the worse is so little help from the healthcare system. Being told nothing is linked and no cause. To understand why when no professional even listens to how debilitating it is or has answers to how to solve. Or even tests me properly in the first place…..”
• “I am not sure what has caused the large difference in me, but I do know that what the doctors have put me thru has taken a large toll on my self esteem. It is the first time in my life I felt ill equipped to fight for my self.”
• “How do I feel? I am angry – two years ago I walked into the endo’s office and said I thought I had another pit tumour and that I have had two before. She laughed at me and two years later sent me for a CT scan only because I took my son in with me and he told her to do something. Yes, I have another tumour. If I had listened to the endo I would be on the anti-depression meds she tried to force on me and not getting proper treatment.”
• “I believe I have had pointers or symptoms for a long time and this has an impact but I guess by far the biggest thing I battle with is I don’t see me in the mirror and some of the subtle changes have almost seemed paranoid up until now. You start to self doubt. It’s demoralising and isolating. Even when I approached GP the response also made me feel as if I’d wasted their time. These responses just help to increase the sense of isolation. So yes, psychologically it does impact and undermines my confidence.”

As for me? When I saw my neurosurgeon in April, I was forced to talk to a social worker because I had scored worse on the depression screening test than I had before. (You mean my mental health was worse after my surgery? Huh.) The social worker suggested I see the psychiatrist they have there in the brain tumor center, who was apparently so wonderful at overseeing the mental health of us poor people with tumors in our heads.

The social worker said, “She’s so great with patients. You do have cancer, don’t you?” I said, “No, my tumor was benign.” She replied, “Oh…well, she only sees cancer patients…but maybe she’d make an exception…” I said no thank you. If the tumor in my brain wasn’t good enough for her, then she would have nothing to do with my mental health wellbeing, thank you very much.

Don’t Neglect Our Mental Health!

A medical condition such as a pituitary tumor is not to be taken lightly. Getting a proper diagnosis can be half the battle. Making the decision to have surgery, knowing you might end up worse on the other side of the OR, isn’t simple for anyone. You have to live with the choice, knowing the tumor could grow back at any time. And as is apparent in the above revelations, the lives of some people, myself included, are actually worse after the tumor is removed. But letting it proliferate inside our heads wasn’t a viable option for many of us, either.

We wrestle not only with these treatment decisions. But the flat-out negative reception we often receive from our own doctors regarding the condition they are treating is damaging to an already frightened patient’s mental health.

It doesn’t have to be cancer to break you.

💛ribbonrx