Didn't expect that...

Hi girls,

I promised an update after my last blog. Well... turns out, it's not good...

I'm still in shock, so please forgive me if this seems a bit clinical...

My doctor was at first perplexed why I was called in there until he got all my results up on the screen.. then he got quiet.. He started flicking through books, calling colleagues and kept apologising for the wait.

I suppose, I can start with the good news first!? My last bloodtests showed all my hormone levels were abnormal. Since starting the LE diet all my hormones have stabilized and are now normal - except for two. Testerone, which has fallen more than half and is now only slightly elavated and prolactin, which is the problem. But, atleast this is one bit of evidence to show that the LE diet does work... Atleast, that's something.

The prolactin bit isn't good. As I'm neither pregnant nor breastfeeding... well, to put it bluntly, my doctor is fairly certain I have a brain tumour... I'm devastated beyond words.. I've gone through the day switching between laughing and crying. I'll need and MRI to confirm diagnosis, but my doc said there were precious little it could be otherwise as it was clearly not there before I had DS2 (therefor not a syndrome of some description).

I went into this year thinking I'd go out of it holding my babygirl... Now I got to get my head around possible having cancer. How do you do that!? more importantly, how do you tell your loved ones? The worst is my boys... makes me cry just to think of them.

I thought my next trip to radiology would be to see my next baby, now it will be to find out if I really do have cancer and according to my doctor it's the most likely scenario...

What to you say to that!? .... Dammit....

What is your prolactin level?

It's well over 700. In non-pregnant women it shouldn't be more than 29 mg/L.

It is likely non cancerous and 25% of people have them on their pituitary glands. It is treatable if that is what it is.

Vomit. My stomach actually turned reading this.
As mentioned above a tumour can be benign and many people live with them, my boss is one of them (pituitary tumour).
It's all very terrifying, but stay strong until you know what you are dealing with. Don't loose the dream of holding your baby girl, this is an obstacle, not a dead end, and your boys don't need to know anything yet, if ever.
Thinking of you xxxx

Pixi - that's exactly what they think I have. and Hopefully it's benign!!

Didn't want to read and run. I'm so sorry Hun. Is there any chance that it could be a lab error? I've had some errors before.

I hope it's the best news possible from the scan xxx

My sister was diagnosed with a pituitary tumor...almost 12 years ago! She is totally fine with no symptoms...and 3 kids to boot. It must be awfully scary, HUGS.

It's not a lab error and unfortunately I do have symptoms as it is, i.e. very frequent headaches, blurred/double vision.

I'm so sorry... I don't really have any other words. Sending you and your family hugs x x x

I'm very sorry to hear that, but the good news is that a prolactinoma is benign and can be treated by meds in most people (usually dopamine agonist drugs). I'm a med student and we were just talking about this a few weeks ago and what a good prognosis it has. Do you feel like you might be developing tunnel vision (losing peripheral vision), or just blurred vision?

Tiggerian, I know 2 people with a prolactin-producing tumors - they're really super common Prolactinoma - Wikipedia, the free encyclopedia and most of them are benign. My friends with them, just have to keep an eye on them and get their blood levels checked a couple times a year. I'm praying for a good outcome for you.

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Originally Posted by peonymama

I'm very sorry to hear that, but the good news is that a prolactinoma is benign and can be treated by meds in most people (usually dopamine agonist drugs). I'm a med student and we were just talking about this a few weeks ago and what a good prognosis it has. Do you feel like you might be developing tunnel vision (losing peripheral vision), or just blurred vision?

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I have 'foggy' and blurred vision quite a lot - I find it hard to focus on things for a long time (for example today I couldn't focus on my microscope at all - no matter how much people told me it was focused and very clear, I just couldn't make anything else but "pink blur" on my slide).

I also suffer from near constant headaches and nausea as well as having problems with my balance (walk into things or just simple loose my balance while standing still).

I'm so sorry to hear you are facing this! I think it's excellent that they have an idea of what is going on, and the replies everyone is giving make it seem hopeful. I hope they can find the right medicine for you, so that the problems you are having are cured soon!

Oh my goodness, I really hope it is non-cancerous! Hopefully the doctors have answers for you soon!

My prayers are with you! I hope that its benign and can be treated soon.

Prayers for you! Please keep us updated when you can! Our hearts are with you.

You are in my prayers I hope it's all gonna be fine....hugs!

I am very sorry to hear this, such awful news and I am hoping and praying for you that it is treatable xx

Im so sorry to hear you are going through this. I pray you hear good news from all this soon. I had a major scare a couple of years ago, a biopsy of a thyroid tumour I had scared me stupid. It was a long stressful wait for surgery, all I could think of was my 2 young babies at the time. I had the surgery. It was all benign and here I am pregnant with my forth baby just over 2 yrs later...
We are all here thinking of you and sending you many healthy thoughts. Much love and big hugs x x x x

Tiggerian, I'm so sorry you are going through this. Sending you a massive hug.

My Dad had a brain tumour, his symptoms were loss of sense of smell and taste. He went to his GP about it and was fobbed off being told he had probably had too many hot curries. He collapsed one day and was rushed to hospital which is where they gave him an mri scan and found he had a brain tumour. They think it was probably growing for 20 odd years without having any major impact on his life but as it had caused him to have a fit they wanted to remove it asap. He was operated on within a few days and was totally fine afterwards. They found out it had been benign but the growth itself was of course impacting on his health.

So please take hope from this, it is so good that they found it because now you can get checked out and have treatment. It is easy to fear the worst when we hear such scary news, but I hope and pray that you get this sorted out soon and go on to have a beautiful daughter before the end of the year.

Big hugs xxx

Thank you all very much for all your posts and lovely thoughts! Especially all the positive stories - they do give me lots of hope!!

I am keeping my blog updated as we go along. I thought that was easier than continuously spamming the forum will all my willy nilly thoughts!

Tiggerian I'm so sorry to hear what's happening to you. I hope you get some answers soon because I completely understand the waiting and not knowing is the worst. Once you know what you are dealing with you will feel a lot better, and be able to make a mental plan.

When ds1 was 12 months old, and I was 26 I had an episode of pain which landed me in emergency in our small regional hospital. I'd had that pain before and gp's kept telling me it was nothing, or that it was pluracy and giving me antibiotics. Finally the emergency gp ordered an X-ray only to find I had a very large tumour wrapped around my heart and invading my lung. Needless to say they couldn't biopsy so we had to have nuclear scans, a full body ct, etc etc. and a month wait between the xeay and surgery before I could get answers. The waiting was the worst part. It turned out to be benign (although aggressive, so for a moment the scans looked bad), and the surgeon used a less invasive method (a thoracotomy) than opening me up front (not the 'zipper' heart surgery), and the tumour turned out to be a teratoma, which is one of those creepy ones that grow hair and teeth and things, eeeew! Trust me to have the freaky tumour. I can't even get the normal tumour, lol. A sense of humour got me through, my uncle suggested they steak it on removal, to make sure it's dead, haha.

So after 6 weeks of not driving or even being able to lift up ds, I was healed and able to pick my life back up with a new outlook and appreciation for how special it is to be given a second chance. We conceived ds2 6 months after surgery and never looked back. I have X-rays booked for 2 and 5 years, and had the first, which was clear of any re growth (they didn't get it all as part was around the aorta).

I really feel for you going through something as horrible as you are, I was told I should have died in birth, my caesarian, and the tumour surgery, and I can really say I feel lucky for the experience I had because it could have been so so much worse. I hope you are as lucky, and hear that lovely word 'benign', I hope the treatment is swift and simple and you are able to resume your journey in life with the lust for life I've found since going through all that.

Please do keep us posted and stay strong. It helped me to deal with what I knew at each moment. So now you know there may be something there, the next thing to deal with is the scan to confirm. Then you will know the where and what, and you deal with how to get it out or shrink it. Etc. one step at a time hon, or you will freak yourself out.

Oh you poor thing -- how stressful this all must be. I sincerely hope you hear the best outcome when you do get your results. Just know that you are never alone (we are all crazy creepy like that...) ;) Good luck tigger..xx

Not fair, really not fair!! So sorry you have to go through all this!

Again, thank you so much for all your stories and support!!! I've gotten more sympathy and support on this forum than from my own parents, so it really does bring tears to my eyes and I'm so touched!! Thank you!!!

Humour is definitely one of the things getting me through it too (like naming it Terrance!!) - and I seriously hope mine isn't hairy! I can handle most things, like the doctors dying my brain, but having a hairy brain .... I don't think my partner is ever going to let that one go x_X

Oh God beegu (i know your name is tiggerian but I always want to call you beegu because of your pic!) just wanted to say how sorry i am, what a terrifying thing to be told, I will be sending you tons of prayers that everything works out ok. I don' know anything about them but it sounds like it's probably the best kind of brain tumour you could have got (ok that was suppoed to sound comforting rather than just wierd!!)

Ps. [bad taste joke] I can't believe it might have teeth and hair, maybe it's trying to make a better looking head?

:superhero:

It's cool! Beegu is adorable!! :P

Never thought about that! I suppose that would make for cheap plastic surgery :P Wouldn't mind getting a new set of teeth, or a new nose! Could do something about my wonked out eyes (Not in a racist way... my eyes are really assymetrical!)

Well, Was suppose to have my MRI on Friday, but because of a little bit of snow I had to cancel (my childrens nursery closed at 9 am, couldn't find any child care or any one to go with me in my OHs stead and I couldn't go alone in case I had an allergic reaction to the dye). So now I'm waiting for a new appointment... =( More waiting!

hi just reading your threads and your story and just wanted to say i am thinking of you and i hope things resolve themselves quickly, obviously that the tumor is benign and nothing to worry about and that you manage to get your little baby this year, even if it means you only leave 2013 pregnant and on the right track x