Anxiety and depression undiagnosed had Pituitary tumour 6 years

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Am I alone out there? I have a 19mmx16mm tumour get MRI once a year that’s it! No support I have to go it alone

Hello Madchikenlady I have been checking on the Community and noticed your post has gone unanswered. I can't give you an answer myself as I have a different cancer, however by me responding your post will be "bumped" back to the top of the forum and be seen by other forum members. I do hope you receive some answers to your question.

There is support available and can I suggest the following:

* You join our Emotional support forum . To do this just click on the link I have provided. You can then add your details to the forum Once you have joined this forum you should find you are not alone

* Do you have a local "Maggie's" centre near you. This is a cancer support charity. To find your nearest "Maggie's" 0300 123 1801 or enquiries@maggiescentres.orgor www.maggiescentres.org

* You can get that extra bit of support from our helpline on 0808 808 00 00 (8am - 8pm 7 days a week). There are some great people there who can give you that extra bit of support when you need it most.

I hope the above helps - If i can do anything else for you please let me know.

Best wishes - Brian.

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Gone with the wind 20 days ago

Sorry to hear that, I’ve had a pituitary tumour for possibly over 20 years now, where I over produce prolactin. My prolactin levels are around the 600 mark at the moment. I have bloods taken every 6 months. I was removed from treatment (Bromocriptine) some 10 years ago, and at present receive no treatment. My prolactin is higher than it should be, but my testosterone level is normal, something they appear not to know why. I fully understand why you feel you have no support, as in all of the years I have suffered, other than my endocrinologist, I have and never had any support from any GP. I tried to explain to a nurse practitioner how I felt, she replied that a pituitary tumour, is something that most GPs know nothing about. Over the years I’ve been passed from one GP to another, then to be asked, when do I see my consultant, when I answered their question, I would be told, just leave it to them. I am a member of the pituitary foundation, who post useful information, if you’re not already a member, maybe you could join. Take care,

Goldcrest 20 days ago

Hi MadChickenLady

I've been where you are and I just want to let you know a little bit about my story, which I hope may help you cope with the whole kit and caboodle of living with a pituitary tumour, especially the anxiety bit

(thank you Millibob for bumping this post)

I was diagnosed with a non secreting pituitary tumour about 7 years ago, in many cases people have them many years prior to diagnosis and primarily because they only get noticed by scans for other things such as headaches, tinnitus or other hearing problems - this is very common.

After my diagnosis was confirmed, I spoke with my doctor and we agreed that the tumour should continue to be monitored over the coming years. This is normal procedure. They need to establish a baseline for how fast or slow growing it is, and whether or not it is secreting and/or affecting hormone levels.

At this point it's worth pointing out that the mortality rate for treating pituitary tumours is extremely low, virtually non-existant. Although the condition has these loaded words "Tumour" & "Cancer" associated with it, it is in fact considered an extremely manageable condition. A patient is expected to live a completely normal and fulfilling life when it is managed and monitored well.

So, having this lump at the base of the brain does come with a lot of anxiety. No doubt you are having to deal with an assault course of emotions, just like I did.

Ultimately all we want is to have it cured, right?

There are reasons why they take this seemingly relaxed approach to treating them.

Factors such as your age, general health condition and type of tumour will play a role in how they approach your care plan.

The process appears as if no one cares because there isn't much public insight into how their processes work, but suffice to say, there will be a team of clinicians who are regularly monitoring your progress, they have regular meetings to go through all their patients treatment plans, they do track it!

If your anxiety levels are becoming unmanageable, I would recommend that you seek support. There are many ways of dealing with anxiety. Sometimes medication works, sometimes a specific coping mechanism or talking therapy can work too. Please don't suffer in silence.

The outcomes for pituitary tumours are typically very good, and although I'm no longer in the clinical world, I would like to offer you some comfort in the fact that with the right approach and management your journey will improve.

I had surgery 2 years ago to have my tumour removed, and things are going well for me at the moment. The journey is a long one, even after surgery there is 10 years of annual monitoring, for my condition there is a 50% chance of it coming back, but this doesn't cause me anxiety anymore because I know it's being monitored and the condition as a whole is not life threatening.

My final advice for you is to take ownership of your condition, be the pilot, not the passenger and if possible learn more about it (for me this was how I conquered the anxiety, I obsessively studied the condition online) and if you are still struggling, let your care team know, ask for help. The pituitary nurses are particularly good at sign posting. There is absolutely no need to do this journey alone

Good luck and god bless

Wayne

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