Please or to access all these features

Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

I was told that I may have a tumour yesterday.

21 replies

AutumnSummers · 27/04/2012 15:13

For the last 3 months, I have had a swelling of my tonsil and swelling of the lymph node and salivary gland on the right. So, my face and neck has been swollen for ages. I also have a white patch in my mouth where the salivary gland enters it.

I had 3 courses of antibiotics to rid me of an incetion that I have never had. The thing that was a dead giveaway in this not being an infection was the painlessness of the swellings. Who has tonsils like this s1268.photobucket.com/albums/jj573/Lady--Lucifer/?action=view&current=IMG-20120419-02026.jpg

And who can do this with their neck? s1268.photobucket.com/albums/jj573/Lady--Lucifer/?action=view&current=Neck.mp4

Yesterday I saw a woman at ENT who, after an exam, said that it is not a cyst, absess, fat deposit or infection. The liklihood of it being stones is also small given the lack of pain.She said that it is likely a tumour of some kind and that, benign or not, will need removed because of the swelling it's caused.

She has arranged for me to go back to the clinic in 4 weeks and in the meantime I am to go for an urgent CT scan. Results and next steps to be discussed at clinic.

She said that it could account for lots of the symptoms I've been having (Mood swings, breathlessness, irregular periods, painful pelvis, excessive tiredness etc)

Today is the 8th anniversary of DH and I getting together and we are skint and sad.

Even if it IS Malignant, that doesn't have to equal death. I've been through to much shit to let something like this take me down. Hiw very dare it.

Four weeks seems an excessive wait to me. I've been assured that I will be scanned within 2 weeks. I am calling on Monday if I haven't had a letter.

I was told that if I have any urgent symptoms to go to A&E immediately. I hate being in hospital but right now all I want is a reason to go so that I can get to the bottom of all this.

OP posts:
OP posts:
OP posts:
AutumnSummers · 27/04/2012 15:14

I was also told taht the swollen tonsil is likely swollen because of whatever is in my neck, rather than the tonsil itself.

OP posts:
tumbleweedblowing · 27/04/2012 15:20

I can't offer any useful advice, but just wanted to say good luck, best wishes, fingers crossed, and offer as much hand holding as you think you'll need...

AutumnSummers · 27/04/2012 15:25

A bit of hand holding I'm here for really Tumbleweed. I've felt so scared for so long and need to share the burden with people who aren't my Husband for a while. He is beside himself.

I worry about what might be for ages and to be told that the chances of your fears being realised are quite high is making me feel like a frightended child.

My Dad was wonderful. We haven't spoken a lot lately (He drinks, I dislike it.) but he brought me up a bunch of flowers this morningon his way home from work (Nightshift). For all he knows hwo to make me feel like crap when he's drunk, he also know how to love me when I need it :) He wasn't too invasive either. Chatted with me at the door and left after talking with me. It was nice.

OP posts:
empirestateofmind · 27/04/2012 15:31

Poor you Autumn. Why does it take so long to get the lumps removed and biopsied? You should be getting this sorted next week, not having to wait for weeks.

AutumnSummers · 27/04/2012 15:39

Right empire? Everypne I have spoken to says that it's abit off. I agree. I wondered why I even needed to wait for a CT scan to have it removed but I suppose they need to know where exactly to cut. Still, they could have surely taken a sample from whatever is in my neck without a CT scan.

It seems that NHS don't do immediate treatment on those who aren't in pain but may still be really sick. The quickest I was told that I could expect my CT was 1-2 weeks. I guess they're giving enough time for me to have the test and for it to be sent back to them. I am going to call the CT people (Would that be Radiology?) and ask them to call me instead of lettering me with my appointment. I haven't the patience anymore. I have been keeping calm because there is no point in wailing and moaning but it is very difficult to remain composed each time I get told to go away with no further treatment. I have seen at least 7 doctors about all this at the GP before anyone sent me to ENT.

I may cry if I see another dose of antibiotics in my life!

OP posts:
SoupDragon · 27/04/2012 15:50

I had a benign tumor in my neck, just at the point of my jaw below my ear if that makes sense. Something to do with the parotid gland. Anyway, no pain for me either and it was removed with no hassle. I do have a faint numbness/hyper sensitivity in that area of my face because the main facial nerve runs around that area but there were no real issues.

HTH! Think positive.

AutumnSummers · 27/04/2012 15:55

Helps a bunch Soup, thanks :)

OP posts:
MoaningMinnieRisesAgain · 27/04/2012 15:58

Just wanted to offer another sweaty hand to hold, it sounds really worrying for you at the moment.

Tumour is such a vague word that covers harmless lumps right through to nasty malignancies, it's hard to know how much to worry yet, I would imagine.

QOD · 27/04/2012 16:00

Gosh, scary, keep us all posted and talk all you like. I'm up for hand holding for sure

SoupDragon · 27/04/2012 16:00

:) Mine was visible on the outside but I imagine it pushed into my throat too somewhere - I never looked.

AutumnSummers · 27/04/2012 16:29

Soup the lumop inside the throat is what aletred me to the whole thing in the firt place. it felt as if I had something stuck in my throat all the time. docs initially said infection in tonsil but it never went away and just spread across my neck and to my salivary glands.

Moaning the not knowing has been what's been doing my head in. All that the Doctors have been able to tell meup until yesterday is what it isn't instead of what it is. It was like they were afraid to say tumour to my face. The less they said, the more I worried. Now, at least there is some sense of moving forawrd. It is nice to feel taken seriously.

OP posts:
bronze · 27/04/2012 16:33

My daughter has had operations on lumps in her neck. Never found out what it was though they think it was tb of some form ?
She has similar symptoms and a movable neck
Just wanted to add my good news story to help reassure
Hope you find out very very soon
Kick up a good old stink
X

AutumnSummers · 27/04/2012 16:58

Thank you bronze. I'm immune to TB. The best thing about that being no big circle on my arm lol I am glad that your daughter is OK now.

It is good to hear of all the other kinds of lump that can occur though. It is very much reassuring. Thank you all so much!

OP posts:
AutumnSummers · 30/04/2012 07:58

Was called to the ENT ward today for a check up at 10am. I hope they keep me in. I'm gagging on the bloody thing. If they do keep me in I won't be able to update til tomorrow when I can get credit for my phone. So if I doin't update again today that'll probably be a good thing!

OP posts:
bronze · 30/04/2012 09:16

Hope you get some answers and they realise you need it sorted Now

ohmeohmy · 30/04/2012 17:18

Good luck

MoaningMinnieRisesAgain · 02/05/2012 22:28

Any news Autumn ?

Hmc · 02/05/2012 22:31

Just caught this thread - hoping you are okay Autumn

bronze · 03/05/2012 08:33

Wondering how you are?

New posts on this thread. Refresh page