Big white ulcers on my throat and mouth

[starla]

well,i went to the GI yesterday and because my ct scan and barium were ok he said he is now testing mt for lymphoma and another rare disease ..a tumour by the appendix???....
my colnoscopy said red inflamed mucousa in ti and my endoscopy said the same in the duedeum??
im so frightened...i have a 24 hour urine test im doing at the moment,and have a blood test tomorrow which has to be put straight on to ice??..
i really think he has this wrong..the only reason he is doing these tests is because my glands in my neck are huge and i have 3 big white ulcers on my throat and mouth.
has anyone else had to have this test??
im not on any meds as yet

 

[bushydougie]

When I had my CT scan I noticed there was a note on the slip the GI writes out for the appointment that mentioned checking for lymphoma. He hadn't mentioned this to me and it panicked me a bit. However what he did say about the CT scan was that he was doing it mainly to double check that there was nothing else wrong with me and to get a bigger picture. I know it's scary but at least they are checking everything out quickly and you will know soon. All my results were clear but the GI still believes I have crohn
Try not to worry too much

 

[starla]

ohh THANKYOU THANKYOU THANKYOU!!!!!...im sat here trying desperatly not to think about it but i cant help it!!
wow!!!..im so glad yours came back ok,i really do think they have mine wrong as the very first test was a colonoscopy and was performed by the IBD crohns specialist nurse,and she herself said to me TWICE..its crohns...
i just am so blimmin scared..what test are they going to do for you next?

thankyou so much for replying xox

 

[bushydougie]

Hey that's ok. That's the great thing about this forum. Theres always someone on here who is experiencing something similar or knows the answer!
It's hard not to worry though when you don't have a full diagnosis.
I had a small bowel meal last week but the radiologist didn't find anything though as I'm on pred at the moment he said that any inflammation would have gone anyhow. Not sure what's next. Waiting to see GI again in October.

I hope your tests go ok. Keep us updated on your progress.

 

[DustyKat]

Hi Zoe,

I'm so sorry to hear you are having to deal with all this. There is only one thing I know of that the blood test has to go straight on ice and it also has a 24hr urine collection to aid diagnosis and that is Porphyria, it also fits with being rare. This is only my suggestion and may not be what the doctor has in mind. Here are a couple of links, perhaps something mentioned in them may sound familiar with what the doctor said to you.....

http://www.nlm.nih.gov/medlineplus/porphyria.html

http://www.uq.edu.au/porphyria/

You will see that Porphyria is treatable so please don't stress with the information I have provided! Remember I may be way off the mark here!!

Good luck with your tests and please keep us posted!

Take care,
Dusty

 

[starla]

oooh thanks also dustycat!!..he said the next 6 weeks were going to be a battery of tests..he said this one is for lymphoma..but im so thick i didnt know what lymphoma was and asked him..when he said its a cancer i didnt know how or what to think...then he said the other one..the one about the tumour that is small and can grow next to the appendix..
i will ask about the porphyria..see if he is doing that test also? i just keep looking at my children and wanting to cry..xoxo:frown:

 

[DustyKat]

I know it's easy to say not to worry but harder to do!

Like Sam has said it is normal to test for cancer amongst a host of other things when trying to diagnose someone. In a post a while ago someone was concerned that they had tested for cancer in the lymph nodes of their bowel. Again this is a normal part of pathology when testing and reporting on a specimen like this. It was mentioned on the pathology report of Roo's resected bowel that there were no signs of carcinoma.

When you go to see your doctor with your presenting symptoms it really is in many cases more a process of elimination rather than them hitting on a diagnosis straight up.

Dusty.

 

[starla]

ahh i see,so they have to rule out everything else really,one thing is for sure,when these tests come back and if they are all ok,im going to be the happiest~thankful~crazy dancing mummy around!!!..haha...i wanna say thankyou fo reassuring me,i feel much more positive about tomorrow now!!
xoxooxo

 

[Astra]

Hiya Zoe

so sorry you're having to go thro this, it's not nice. Just want to concur with others too.
when my daughter had recurring tonsilitis they mentioned lymphoma to me, and I freaked! after speaking to consultant in more detail it turns out that this is procedure to eliminate all possibilities and scenarios. they also did it with me before my hysterectomy, and got an oncologist to talk to me, I was terrified, cos no one had mentioned cancer before then!
All results came back clear for both of us!
let us know how you get on and I'm wishing you lots of luck
xxxx

 

[bushydougie]

That's how I've looked at all the tests I've had done. They might not have yet found out what is wrong with me but at least they've ruled out anything else. And if they has found something at least it was found and could be dealt with. It's difficult to stay positive but try to look at it this way if you can.
Take care and remember to let us know how it all goes
x

 

[bobby.parker]

I'm currently under investigation for Lymphoma, I found a lump - I thought it was a hernia, the doctor was quite worried and sent me too A & E, I spent a few days there. They sent me home and to keep an eye on ANY changes.

Year and a half later, here I am. Yet they're still keeping an eye out on it, surely I'd know by now if I did have it, right?

I think of it like this.

If you have Lymphoma, you have it! The diagnosis is only putting a name too it.

 

[starla]

thankyou so much guys!!..its so reassuring to hear they test for lymphoma quite often!!...phewie!!..it is scary totally,but you are all right on saying that the process of elimination is needed.
i guess it just never crossed my mind,all the hospitals ever talked of was IBD'S..
but i will promise to tell you all the outcome of course!!..and thankyou so so so much for talking with me about this....i am pretending to be all strong in front of folk in my family and stuff...and its fab to tell you all my real frightened feelings!!
lots of hugs
xoxoxox

 

[starla]

ps...Astra...im so so glad you and your daughters results came back clear!!..it certainly puts things into perspective doesnt it!!... xoxo

 

[Astra]

Yes Zoe, it certainly does that!

You'll be ok hun, it's just hospital procedure, try and chillax now with your family
lotsa luv xxxx

 

[Manzyb]

hey Starla! Thinking of you and hoping everything turns out okay. It really is just a process of elimination to get a diagnosis. Back when I was 15 and trying to get diagnosed they had talked colon cancer and scary things like that. Thank God it wasn't!! But it is so difficult to have all of these things brought up. It makes your mind wander so much. I'm going to keep checking back for an update tomorrow, missy! Lots of hugs :0)

 

[starla]

thankyou manzy!!..it is scary aint it,it does make your mind wander!!..one minuete i think..nah i wont have that..then an hour later im scared again thinking..shit...what if i do!!!...i so wish i hadnt been told what they were testing me for,i really do,i will be back on here tomorrow,i promise,
xox

 

[Manzyb]

I know!! i wish sometimes they would just look for what they are going to look for and not say anything. lol but then we wonder why they are doing tests and stuff!! i think either way we'd worry.

I'll check back tomorrow. I hope you get a good night's sleep and everything will be okay tomorrow. We'll be waiting to hear from you!

 

[jamilea]

Here's to hoping you worry less, get to the bottom of this and get to feeling better!

Cheers love

 

[Manzyb]

Hey!! Any news?

 

[Rebecca85]

When I was first being diagnosed, my ct showed inflammation so they assumed Crohn's and started me on pred, but the doc did say he wanted to do a colonoscopy to 'rule out a few rare conditions' (he didn't name them). So I guess it's pretty routine to do extra testing to be on the safe side.

 

[starla]

no news yet...the hospital said i would hear by tuesday...it was all a bit scary and serious..they had to keep the bottles on ice and be really quick putting my blood in..then putting the bottle back on the ice as fast as possible...
ooh rebecca...thats reassuring...seeing as all my symptoms are pointing to my TI like yours,one good thing that has come from these scary tests is that ive booked an appointment at the non smoking clinic for wednesday!!!..its made me really want to quit smoking...life is just way too short!!!
i will let you know of the results!!!! xoxooxxo

 

[Manzyb]

Hey starla! Glad you went and got your tests done. Hopefully they'll come back with some good news.

I know that some of the tests are scary. I do phlebotomy, well I went to school for it.. not currently doing it.. anyway.. there are a few tests that the blood has to be kept cold to get an accurate reading for. I know it may seem weird, but it just gives them a better specimen for whatever tests they are doing. Some viles of blood have to be guarded from light, some need to stay cold, and some it doesn't quite matter :0)

I'll be checking back! I hope you are doing okay and keeping your chin up

 

[starla]

hi guys..the hospital rang me yesterday the results arnt in yet??..but now i have a "throat virus"..urgh...feel rubbish..headache sore neck n glands..i think me worrying about the results have possibly made me poorly...i will ring the hospital see if the results are in today!!! xoxo