Well, I was sent for an ultrasound on what we all thought was a "clip" in my neck leftover from the neck dissection: a small, hard, mobile lump in the scar.

It wasn't a clip.

A fine needle aspiration biopsy was taken.

There is a lymph node "up" in the other (non-cancer) side of my neck. 'Within normal' - the chap said, but then why did he send a 'normal' picture especially to my consultant.

I have to wait 7 - 10 days for the biopsy results.

I know, I know "think positive" etc etc etc....

But the other half of me is thinking about my tumour being poorly differentiated, aggressive, AND in the nodes....

There's no way to second-guess this. Either it is a recurrence, or it isn't.

I'd just hoped I would have longer than 4 months without it coming back.

It's going to be a very long couple of weeks.

In other news, I now have a more reliable prognosis on my TERRIBLY BAD xerostomia. My right submandibular salivary glad ISN'T THERE, presumably removed during the neck dissection. My left parotid and submandibular glands are shrunk. Today's ultrasound showed this. I suppose I can't now expect much of an improvement on this unexpectedly HORRIBLE condition.

Sorry for the negative vibes. I'm still having counselling for PTSD from parts of what's happened; I try to be 'positive' and cheerful for everyone, but sometimes bits of the darkness leak out. Block me if it's a problem x x x thank you for reading my post x x x

I had about 10 FNAB. Sometimes I received preliminary results from the pathologist when looking under the microscope, good and bad findings, sometimes some don't say, but in ALL cases, the sample was sent out for further pathology, which comes back in 10 days, although probably sooner by my dated pathology reports I obtain.

There are three major salivary glands, parotid, submandibular, and sublingual and hundreds of minor salivary glands in the mouth, and throat. Maybe see or ask if the submandibular gland was removed or not. Mine weren't in my neck dissections, level ll-V, but could have if level l was resected, which is usually involved in oral cases, not oropharyngeal.

Good luck with the results.

Oh Estelle, why would you think any of us would block you. This forum is for you and me and everyone else who comes her for advice, comfort and support.
Your new news isn't the best. However there is no definitive diagnosis yet. With this disease our minds take off on a terrible tangent, the trick is to tell it to stop.
This was a little trick a therapist taught me during our cancer journey. If your mind goes to the dark place, let it. But, after a minute yell at yourself loudly - in your head - STOP. Then think of another happier topic. Surprisingly this has worked well for me.
As you work in the hospital system are you able to ring your team in a couple of days for the results? I too am a Nurse and our ENT rang me with Kirs's initial biopsy results and with the second he came to the unit where I work to tell me.
You are right, it's either a recurrence ... Or it isn't. No amount of worrying will change that.
Sending you heaps of positive thoughts and vibes,
Tammy

Estelle, you are not going to get blocked on the OCF forum for showing your feeling. Thats not what OCF is about! We are here to support each other in both good news or bad, happy times or sad. We are all in this together and we do completely understand exactly where you are coming from. Nobody can be happy and upbeat all the time just like no one can always be sad. Just know we are all in your corner rooting you on.

Best wishes!

Hi Estelle. I'm so sorry that you are in one of those awful biopsy limbos. It must be a shock after what you went through during treatment. I'm sure we can all relate to your feelings so don't feel bad about that. Where else can you vent to people who understand? What Tammy said about trying to stop the downward spiral of thoughts is something I was advised to do too. Just tell the thoughts kindly to go away after acknowledging them. I've been reading about ways of coping with this sort of stress since my 4th cancer diagnosis. When I was waiting many weeks over Christmas for my latest biopsy I contracted an awful gastro-enteritis that continued for a week. Looking back I think the stress of not knowing made me susceptible to the bug and less able to throw it off once I got it. Not a very scientific observation but it's how I feel about that waiting period. I've also had lots of biopsies where the results were good:)

Xerostomia is much worse than I thought too. I don't have it all the time but right now with a cold and my nose blocked I can barely swallow unless I sip water constantly which then means frequent trips to the loo:)

Wishing you well.

Hi Estelle:
I know where you are coming from. My darkest hour would always be just as I got into bed and before falling asleep. It only took one or two times thinking that way to realize, if you let this continue you may not go to sleep tonight at all.

Fortunately, for me when I go to bed I'm pretty tired already, so the easiest thing for me to do was to just say I'll worry about this tomorrow. Only when tomorrow came, I didn't worry about it. After that, it never came back at bed time again; and for some reason (maybe I stayed pretty busy during the day) it never returned during the day either.

One other thing that helped me a lot was getting to know Bart on this forum. He has had more recurrences than most of us have fingers, yet he's survived them all and maintained a positive attitude AND been willing to share it with others. He has an interesting philosophy about life that comes from Buddhism (I think). My thinking has always leaned that way anyway, he just clarified it enough for it to become a dominant way of thinking. Look him up and read about him on the forum. If you send him a PM and introduce yourself I imagine he will teach it to you too.

You've done fine so far on your journey. Even if this new thing is a recurrence it's just a little detour along your path and you will do fine with it too. We will all be here with you every step of the way.

take care,
Tony

Estelle, hope you will become secure here and know this forum is a safe place. I took Tammy's advice several months ago when reading it to another member here. Only one minute in my dark place and then pulled myself out and just moved along to other thoughts.
Takes practice, but practice makes progress!

Thank you so much for your kind replies. There is such a store of compassion and humanity here. I am incredibly grateful.

I had a counselling session yesterday with Macmillan (the UK cancer charity, as I was diagnosed with PTSD from all this). We talked about this new lump.

I feel that, on balance, it's quite likely to be simply scar tissue. Fortunately, or UNfortunately, I am a person who needs "evidence" - facts and figures. This is a blessing and a curse, and I know it can make my thinking rather rigid and times. Sometimes it stops me from feeling as hopeful as I could feel.

Although I don't yet have the "evidence" my mind craves, in the form of the biopsy results, I am FORCING myself to at least be realistic, if not 'hopeful', it is highly likely this will not be a recurrence of the cancer. It is more likely, realistically, to be scar tissue.

So that's my survival plan for the next couple of weeks

Main thing is, I am feeling generally a little more well, a little more energy, more confidence - and being back at work has helped me with these things. It has stopped me brooding at home, dwelling on myself all the time, although I think cancer makes you a bit like that at times....

In my job, I have 8 hours each day where I *must* think about 12 other people, and the other nurses and support workers I work with. Having the thinking pointing outwards instead of inwards is VERY healthy!

Give your body time to recover. We always say it takes every bit of 2 years to reach your new normal so you have a long way to improve.

Estelle,

I am with you, if I could carry the sample to the lab and push the tech out of the way, to use the equipment I would.

Don't worry about being negative. When I am feeling down, I come here to peruse other people positive success.

Sometimes writing a commiseration to someone you don't know who is going thru something similar is quite healing in and of itself.

Sometimes writing a post where you actually help or provide encouragement to someone is even better.

You know how those posts affect you correct? Pass it on