Pituatry tumours

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you are having some complicated medical issues. These bodies we have to live in do make this living thing rather hard at times and when it comes to our health no one is a fraud.

I am Mike Thehighlander and I volunteer on the Community and I will do my best to get you to the best place for you to find the support and the help you need. On my long journey I found the best way to navigate the various challenges and the noise in our heads is by talking with people who are on the same journey.

My cancer journey was rather different but I see that you have already joined our Brain Cancer and Pituitary Tumour Forums, this is the place where you will be able to connect with people who understand the journey you are on. You could copy and paste the text on this post and hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.

We also have our ‘Ask an Expert’ section but please allow a few days to get an reply.

When you have time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you. 

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page. 

All the best. 

hi

welcome to the online community 

bizarrely I felt I had been pinged around the back of my head or neck with a huge elastic band, I'd forgotten about it until I read your post

other than the sensation of being 'hit' I have nothing else to offer, sorry

My frustration with GPs and our dear old NHS generally is that they focus on specifics rather than whole person wellness.

I had breast cancer in 2015 although I had actually had the tumour growing since 2012, we saw it when we compared the imaging in 2015 and everyone was seriously worried that it had probably spread in that time, luckily / thankfully it hadn't, although I'm struggling to trust the reports and results after a few errors. 

Part of the reason it wasn't detected is that I had a weird set of symptoms none of which suggested anything at all, other than age, hormones and menopause, which is exactly what the GP decided was the issue. I had loads of individual tests by various specialists but nobody took a step back and looked at my whole body, they still haven't. 

I had a whole body bone scan after diagnosis to make sure the breast cancer hadn't spread but only a chest, abdomen and pelvis CT scan and I'd had symptoms around my eyes in 2012, an incredibly itchy white dot, which half the doctors couldn't even see let alone diagnose .

Last year I queried why they hadn't done a complete body scan, or ever checked my brain/head, so they booked the CT to include my head but when I got there they told me they were only scanning to me ears ... I should have just said well I'm here now, you might as well ...

So although I was given the 'NED' in March 2016 it's something I can't just 'get over' and move on from. I hang around here to attempt to console newbies like yourself, hauling them into the lifeboats, and direct them to places where they can get a bit of reassurance that the end isn't nigh, just yet.

Try the brain groups, there are some very reassuring posts, believe it or not, surgery to the brain / head isn't like the lobotomies you see in black and white movies these days    I promise.

I'll see if I can find some to direct you to

hugs

Carolyn

xxxx

Hi Carolyn 

I think my main worries are the not knowing properly what's going on inside me but mainly not.having a plan (CONTROL FREAK!) Also I'm just so damned tired, having hot flushes ALL the time and I space out and feel.disconnected which makes it hard to concentrate and in my job I need to concentrate.  It's weird that you had the "ping" sensation too.  The docs thought I was having a brain haemorrhage with my walloped with wood sensation and ct scanned me which is how the suspect thing was found.  other than that I really thought I had an underactive thyroid (weird.facial hair growth and unable to lose weight) and was in a relatively early.menopause (I'm 42) I kept.asking.for thyroid checks and hormone stuff which were always clear and they eventually referred me to.a.nutritionist.  when I showed them a food diary they said I must have done it.wrong or.wasnt exercising like.i.said I was it was really demoralizing.  And I haven't been back until the auras and spaced out sensation got too bad and they went "oh yeah you need an mri there's a concern about your.piuitary gland." So now I'm here.  How did you find the mri? I'm a touch claustrophobic so not looking forward to it but I guess it's a means to an end.  

I'm sorry to hear that you've had a crappy experience at times we so need to be able to.trust our professionals.  Thankyou for the rescue I'll go hunting.for the posts.  Fear of the unknown and lack of knowledge is truly.pants.  here's to a.very positive move forward for us all and excellent care in the future 

Liz xx

Hiya

Thankyou.  I guess with no proper diagnosis at this point and the likelihood that if the suspicion of a tumour is true that it will be benign is my reason for feeling.slightly fraudulent.  I'm grateful for the reply and signposting too I'll message the experts and call the line.  

Lost my dad to melanoma a year ago and now the word tumour is being used, it's kind of too close to home at the moment.  So deep breaths, lots of positivity, increase my knowledge and use the time to prepare questions and thoughts about how to.move forward.  Had a good cry last night and feel somewhat calmer today.  The unknown is a hard thing to move towards.  mri a week tomorrow!! Here's to having a proper diagnosis and having some.answers x

I think talking with folks who have been through the diagnosis rollercoaster can help and as you say it’s all about getting questions together so when you are given the opportunity you can better understand.

It actually took 21 months to get the evidence that I actually had Lymphoma, my team were 99% certain but had to get the pathology to back it up.

All the best.

hi Liz

auras ?

I had auras ... when I was pregnant with my fourth I put myself on a low sugar diet due to gestational diabetes and started seeing these weird auras, like coloured blocks or white or pale coloured lights, a bit like a geometric stained glass window, that started in the middle of my view point, meaning that focusing on the computer screen was impossible, then they'd move or shift around in a circular pattern getting larger and larger, allowing me to see through the middle, eventually affecting only the peripheral vision, and eventually disperse.

I thought I had a brain tumour or something but the ophthalmologist told me it was migraine. 

It largely cleared up after I had him and I can't really remember the last one I had but probably around 2012, which was when I was struggling with all the symptoms including the dot on my eyelid. 

I had had an MRI on my head back in 2010 but it was clear then.  

I don't mind stuff like that, I just relax and chill and practically fall asleep but if you're nervous see your GP for a small quantity of Lorazepam. I had one to put under my tongue when I had the PICC line fitted for chemo, they don't like you jumping around. 

Part of the reason I booked myself the private breast screening was that I was putting on weight but it wasn't really linked to diet or lack of exercise and nothing felt comfortable, I could have dressed in the most comfortable pyjamas and still felt weird. It was whilst I was trying on bras to find something comfortable that I noticed that my already lumpy breasts had changed slightly, the left side of my left breast brushed the underside of my arm and it just felt strange. Then I had this astonishing premonition I wouldn't see Christmas. So I booked myself in.

It was after the biopsy in that screening I started to feel unwell, lost my appetite, felt nauseous and then felt that whack on the back of my neck and then it stiffened up so much I couldn't turn my head, I had to turn my whole body. 

Getting the results in the end was a relief to say, I told you I was ill. Yes the surgery was unpleasant but I don't know anyone who'd submit willingly, it's just a needs must situation. Chemo wasn't nice but it wasn't as bad as I expected, except losing my hair, people I knew quite well looked right through me, like everyone was ignoring me, or avoiding me, a horrible experience. Billy no mates. 

Let's hope you get some results quickly, get you out of the limbo phase.

feel free to keep chatting here, I should get a notification and I'll pop back and keep you company  

Carolyn

xxx

I use the word auras loosely at the moment I have no other word which adequately describes the sensation  particularly that people understand. It's like watching tv when the camera is moving as if it was your perspective and you feel as if you are both there and not there in the action all at the same time.  Then there's an almost ringing in your ears type sensation.  These things are always there but the degree is different that I recognise that they are there.  Odd odd odd x

Thanks for the company! Knowing that other people have some understanding of the worry.  Here's to getting out of limbo no matter what it brings!  

Where are you now in your journey? I get the needing a diagnosis when there's nothing visibly wrong it's hard as other people expect you to function normally and some times you can't but till you have that diagnosis or label you can't.  Again for me part of the "fraud" thing.  My daughter told me I'm lazy the other day she's 7 but she wants to run  and play with me and I'm too exhausted.  Once i know the definitive reason why I'm so damned tired I can start implementing change with meds or surgery or diet whatever it takes to start clearing the fog.  8 days and counting

morning

kids ... aren't they wonderful 

but you shouldn't be exhausted 

I had been generally unwell since about 2010, during 2011 I had the weird thing on my eye for months, I visited dozens of doctors, GPs and specialists, went to A&E at Moorfields and our local A&E one night when it got so bad, I'd  learnt to scratch it in my sleep but the focus of not scratching it in my waking hours was debilitating in itself. 

2012 on top of dozens of other tests I was called for my first routine mammogram and although the nurse / radiologist squinted and pursed her lips it was reported as 'clear', just that, nothing else.  I'd had mammograms with each of my pregnancies due to 'lumpy' breast tissue and had had a private screen in 1998, the splendid doctor had told me then that mammograms don't show up problems in dense breast tissue and that I should always have ultrasound at the same time.  Oh how I kick myself now. I knew that but I didn't act. People like me should have had a special flag on my case notes to show routine screening was never going to be sufficient and I was already on 'watch', not because of family history or genetics but just because everyone medical who'd ever copped a feel of my boobs had commented on 'suspicious lumps'. But hey ho.

2015 hadn't felt well but on the back of every test coming back clear I dismissed that premonition that I wouldn't see Christmas as a daft delusion, what could possibly kill me? I'd had all the tests and nothing had been found. 

May 2015 I finally got to the appointment and the room fell eerily silent. The radiologist tried to lighten the mood a little but then just said I'm not going to lie to you this doesn't look good, I'm going to do a biopsy right now but you're going to need an MRI and for that we feel we should feed you back into the NHS because it's the same machine, we're all the same team and you can't pay to queue jump.

I had the surgery in July but the surgeon managed to completely miss a 2nd tumour that had popped up and it was only because it was painful I realised what he'd done, everyone told me it was impossible to cut away all the breast tissue and leave a whole tumour but that was what he'd done. 

August I started chemo and had my last one Christmas Eve.  Stupidly I expected to roll into 2016 feeling great, chemo done, new year new me etc and I was floored for about a month, dragged myself on a sunshine break to recuperate, then had revision surgery and was given No Evidence of Disease on March 18th 2016. I went to meet my husband to give him the good news and he acted like a total stranger, was white as a sheet and shaking. I've since found out he'd been seeing someone throughout my treatment. I guessed she was probably at the event he was at that day, it would account for his appearance, but he denied it, but then he denied everything. 

I had to go back to the hospital every three weeks for a Herceptin jab up until the end of 2016, only finding out towards the end of the year that that drug can cause 'low mood', could have done with knowing that. I also got involved in the kadcyla debate and during discussions with my oncologist found that actually there are many more treatments available with private health care, money in itself won't cure cancer, if it did Linda McCartney would still be around, but it helps provide more options. So I suggested that and the team instantly arranged a set of scans to give us a benchmark, which wouldn't have happened on standard NHS treatment ... why not ? I hear you ask ... money and staff shortages which is down to money anyway. 

2017 I began to start to feel a bit better and take more notice of what was going on and found an email from Booking.com saying hey *shithead did you enjoy your stay at the 'local hotel', we're all dying to know

Yes, so was I ... totally intrigued to find out why my husband needed to stay at a hotel not 30 minutes from our house. 

Patience is a virtue and I eventually uncovered around 300 messages that spelt out practically the entire scenario. 

It's a bit more complex than I'll share here but we do have a Room for ranting and sharing other frustrations.  The Room

Despite having been told several times I'd need ultrasound to back up the annual mammogram they only ever book the mammogram so I've taken to requesting further scans, 2017's were 'clear' but I'm still struggling to trust these reports. 

2018 was dire as far as my marriage was concerned, my husband resentful that I had been ill and might die and leave him to fend for himself , indignant that he'd been caught red handed but too selfish to put his family first and too retarded to actually make an effort to reconcile the situation.  I was able to have fun with my kids, saw the Rolling Stones, did some theatre trips, nice restaurants, etc

and the scans were again 'clear' ... but I just can't shake the feeling that they missed something and like I said, they never scanned my head.

I'm just about to pick up the phone to chase this years scans, again I've only been given a mammogram.

It took my ages to renew my annual railcard.  If you're familiar with the Best Exotic Marrigold Hotel, Maggie Smith's character says "I don't make plans, I don't even buy green bananas"  and that's how we all feel when we're told we have cancer. 

But I'm still here and my daughter has made me promise I won't die yet. There was a meme, it is quite funny, there's a bloke collapsed on the floor and the woman shouts is there a doctor and this other bloke says, yes, I'm a doctor, she says can you help him, he says I'm a doctor of philosophy, she says "but he'll die", and he says "we're all going to die".  I thought it was funny. 

What I don't think is funny is how I started to get 'funeral plans' in my inbox, that was irritating, I'm only 56. 

You don't have an ear infection ? Your ears are key to balance and problems can cause issues like you describe ?

Actually even dehydration can cause what you've described. 

hugs

Carolyn

xxx