Just in case anyone is interested in my neck lump, here's an update.....

[PositiveAttitude]

I know a few of you lovely ladies were watching my thread about 5 weeks ago about my neck lump, so here's an update:

After the good MRI results I went back to the consultant, who had one feel and disagreed with them!!! The lump had grown rapidly and should not have done, so I had a biopsy taken. 2 weeks wait only to be told it had failed. A second one taken with an ultrasound for guidance and I had a call last week to say that it had come back "inconclusive"

So I asked to be referred to another consultant who I went to yesterday. He seemed a really nice guy and far more knowledge about this than the last one.

I have a rapidly growing tumour in my left parotid gland. The bit I can feel is just the edge of it and it looks huge on the scan pictures!! He was very honest and said that at the moment (well the scan was 17th September) the pictures show no "leakage" to connecting tissues, so it looks benign, but he wants to treat it as "suspiscious" until it is out and has been tested fully, especially due to the rapid growth. So I am waiting for a date for "urgent" surgery, which apparently should be within the next 6 weeks.

Its been a tough few weeks, but now I feel more relaxed knowing that something positive is being done and I have an ending in sight for this. I had wanted to avoid surgery, but it is the only way out now, so the sooner it is done the better and I can move on withb life. If it is malignant, then I will cope with that when/if I have to.

Thanks for all your support and positive vibes!!

I had a tumour in my parotid gland. As you probably know, it's very rare. There's a online forum - google 'parotid gland forum'- which is a bit hard-going to use but has lots of useful information on it.

Hope that your surgery goes well.

Thanks Rosebud, I have lurked on the forum and posted a couple of times. It is a bit unwieldy, though, isnt it. But lots of good information if you can dig around and find it. Also very American, I found.

How long ago did you have a tumour in your parotid? Was it benign? Did your face droop after surgery? Anything bad I should know about? How long between discovering your lump and surgery? Had it grown a lot? My biggest concern is the rapid growth of mine. Did you get a twitchy eye? My eye is the thing that is driving me crazy. I have pain around the tumour site, but its the twitching I find difficult to cope with. Sorry about all the questions, but yes, it is rare.

I've pm-ed you.

Thank you, and me, you.

PA, have just seen this. I remember your original thread well.

So sorry that it's not as straightforward as you were originally led to believe. BUT it is good news that it is now being properly investigated and treated seriously.

Lots of strong, positive thoughts - I know you are good at those and good luck for 13th November. Will keep this thread on my watch list so I can see how you're getting on.

PA - I'm so sorry you aren't feeling great. I suppose you just want the surgery over and done with so you know what you are dealing with.

Keep your PA going (I know it must be hard) and I'm thinking of you.

Good luck PA - I also remember your thread.

Thanks for the posts.

I have decided to take the rest of the time off work. I am just feeling awful and am really struggling. Not sure how my boss will be, but he will have to suck it!! Just hope i dont get bored too quickly - I am not very good at not actually "doing". I might get so bored I manage to get some house work done, although DH has banned me from even doing that - Oh I love him for that alone!!

Hope you are ok, was just thinking about you and wondering how to find the thread - and then it popped up!

The 13th will be here soon, what would you really really like to do with this time?

Maybe make a few plans or even a list - if it were me I would let the time go by with me hanging around in my pjs all day moping around the house and then kicking myself for not doing something else and generally feeling rotten.

Sounds like DH is being great - how are the DC?

Thanks JJ, DCs are ok, I think. Either that, or they are covering it well. DD1, who lives many miles away gets worried, but the others seem ok, if a bit quiet and thoughtful.
The idea of doing nothing does appeal, but I know I will get bored. I will have a practice and see what happens. I have lots of good books and have just started the third Stieg Larsson book, so plenty to keep my mind active.

PA, so sorry you're going through the mill. (it's FA btw)

I wondered if the doctor had offered you anything by way of calming meds or anti feeling sick meds etc etc. There's no reason your present symptoms shouldn't be treated AFAIK...it might be worth giving them a ring and asking for something to help you cope, physically and mentally.

There's no point in your feeling so awful, whatever is going on with your poor old gland.

PA I am so sorry to see what you have been going through. You've always been so kind and lovely to me I cant believe you are going through this and I didnt see any of it.

I have just said a little prayer for you and will be thinking of you.

xxx

Just to let you know we are thinking of you PA.

PA, so sorry you are going through this.

My husband had his parotid gland removed due to a tumour 2 weeks ago.

I have toddlers crawling over me at the moment but I will be back later to tell you the ins and outs.

Thanks everyone Really appreciate your messages.

Took the decision today that I am not working any more until after recovery. Its just taking too much out of me. So lots of time on my hands from tomorrow .

Come on Constance out yourself, who is FA? I am stumped and my brain cant cope with actually having to think!!

Neveronasunday, I would love to hear your DH's "story". How is he now? Has he had final results? Oh, lots of questions, please come back and tell me all, or PM me if you dont want to put it all on here.... perleassssse!!!!

have sent a pm!

Hi PA just wanted to let you know I'm thinking of you and have everything crossed for you

Right, I'm back.

I nagged and nagged DH to go to the doctor's about the lump in his neck. He had a needle biopsy which came back as benign. That was back in June.

He was given a date for surgery quickly but we had to move it so it was rescheduled for October. In that time I think it grew quite a bit and was certainly much more visible and becoming uncomfortable.

He had the surgery which lasted a couple of hours. They let him out of hospital the next day. The scar looked pretty gruesome and went from the top of his ear all the way under his jaw. It was stapled rather than stitched. He looked a little like Frankenstein

However, when he had the staples out about a week later, the scar was astonishing! It looks like a mere scratch. It's still a little raised but the actual incision is barely noticeable. Certainly made a much finer fist of it than my c-section scar .

He still doesn't have movement back in that side of his face. For a few days afterwards his eye would get very sore and watery if he had to concentrate on something for very long but it was fine after a few days.

His face hasn't dropped and when he's in 'neutral' pose, you can't tell. He can't raise his eyebrow or wrinkle that side of his nose. His smile is lopsided and he struggles with his Bs and Ps a little (DS asking him to read Percy the Park Keeper was not a great move). However, the doctor said it could take several weeks or a few months to recover. They can't say. There is a slim chance (less than 5%) it might be permanent but we are hoping that slim is the operative word.

He has his follow up appointment in 3 weeks when he will get the test results.

Sorry if I've been a little blunt but I'm trying to be as honest as possible.

I really hope that all is fine. I've googled read a lot on it and they are surprisingly common and nearly always benign.

Best of luck, and please try not to worry. Easy for me to say I know.

Thank you very much Neveronasunday. Its really encouraging to see that your DH'd had grown a bit before surgery. Thats the bit that seems to be the concern with mine. The bit I can feel, (which I assumed to be all of it before seeing the MRI scan, but is in fact only the "tip" of it) has at least doubled in size since I first felt it 8 weeks ago.
Its encouraging that your DH is getting his facial movements back. Why do they use staples?

Thanks for being blunt, its good to hear it from someone who has been through this. It seems a long time to wait for the final results, but I assume they were pretty sure with the initial evaluation of it. Thats certainly what I am hoping for. Did you know that they thought it was benign before he left the hospital?

I am not really an anxious person, and truly believe there is no point worrying about something that is not a definite, so am not so worried about the final results. However, I have a very busy life (5 DC and 3 smallish jobs) and I am getting very frustrated with not being up to much at the moment. It is really starting to be painful now, too, which I hate because I hate having to take painkillers and would prefer to suffer than take anything.

Only 8 days to wait.

Just saw your link on the CFC thread PA. I'm so sorry you are having to deal with this as well. It's your turn for a break I think! It sounds like you are keeping cheerful which is good.
Keep positive - I'm thinking and praying for you...

Hi PA

Have sent you a PM

x

Just to add, in case it helps at all - my friend had a total lymph clearance on one side of her face and neck. They took her parotid and just about everything else, the layers of fat under the skin went, etc.
They were very careful about the nerve and actually when she came out, she had hardly any problems with her face - she was very slightly lopsided in her smile for a few weeks but that went away, and her eye was a little droopy on that side too, but again it soon started to improve massively and was almost back to normal within a few months.

These were the only real effects. Hopefully you will have no problems at all. x

Hi OM thanks for the message.

Hkgirl, as soon as i feel up to it I will reply, thank you so much.

Constance - I can see a positive - maybe they will remove my abundance of fat layers????

LOL

She actually looked just the same as before - I think they involve plastic surgeons so can reconstruct what they remove, iyswim. If you want them to!

Only 4 days to go...... whooopppeeee! I am fed up now!! really the most inpatient person anyway, and not being able to do anything without feeling as if I have run 6 marathons is driving me crazy. Pain is increasing too, the worst today it has ever been, but not long now.

I cant sleep at night, I cant get comfy, then I spend all day exhausted.
I never thought I would actually be counting the days by like this.