New consultant: found swollen lymph node 1 cm - might be a muscle or a tethering but he has ordered FNA with ultrasound. Have no idea when that appointment will be. After that my already sore tongue started to hurt like hell. Nerves, I thought: that mind-body connection. Went to GP: an ulcer under tongue near join with flap. Could be a normal apthous ulcer or "sinister". A double-banger and only a month or so after my last punch biopsy.

The ulcer improved after a day or so with Orabase but is still there. I can't see it because my tongue is such a mess and so stiff that I can't manoeuvre myself in the mirror. I'll give it about five more days ...I'm taking painkillers all the time because if I have pain I worry and because I'm at such a busy time of the year with family staying and the school year drawing to a close: exams and reports.

As chance would have it I was booked into the Auckland Hospital ENT for them to do a review of my case on December 14. By then the FNA and ulcer situation might have come to good or bad fruition. So that day is my D-Day.

A long time to wait.

That sucks... I know the feeling... Long time -!more stress, and the small things derail you. I had one of those days last week. It's when rationality hits irrationality and everything kinda just falls a apart. I'm six mos out from radiation, and the latest ct noted 2 nodes on my non operative, but also radiated side! They are noted but considered normal (within the size parameters! 8mm & 6mm) but it still makes me a nervous wreck and skeevy - ugh! Why report the if they are normal? They aren't clustered there are In two different areas, but still! I'm not supposed to know the report results just yet I'm getting them officially tomorrow! Hopefully my dr. Doesn't look at the results and say ... Normal! Because I know the full detail of the report. I think I would prefer an FNA. Just to be in the safe side. I could very well be fighting something, but I want to know for sure. I trust my drs. But frankly my health is my health and no one will look after it the way I will... So believe me I know the tension you are feeling. Will keep my fingers crossed and toes, and say prayers for you that your ulcer clears before then, and that your node is just misbehaving. take care and hugs... This disease is scary stuff. And it blind sides you ocassionally !

Thanks Cheryl. Nervous wreck is an apt term for how I feel about almost back to back biopsies. Doctors have to be vigilant but I wish there was a way of getting instant results. I was reading an article last night about a doctor who contracted cancer and was astounded about the "toxic uncertainty" of the wait for results. He thought the stress was bad for patients.
But from one nervous wreck to the other, here's hoping:)

I am sorry that you are again going through such uncertainty Maureen.
I hope it is just an ulcer that goes away soon but having pain is certainly a worry! Like you I got the all clear after a biopsy in March, visit with oral surgeon in August and last 6 month (5 minute)check at cancer clinic September. A referral to another surgeon for some laser �tidying up� between tongue and flap (day surgery under general) has now led to another biopsy at same time in January. Quote �I see a white spot at the back that I will biopsy at the same time�.
Like you I am hoping it has gone by then and was nothing but unlike you I have no symptoms. Then again I didn�t have any 5 years ago either!
Easier said than done but try not to stress too much. I know you have a lot going and now even more with Christmas coming up. When it all gets too much take yourself away for a break in the beautiful places you have close by and take pics
Gabriele xx

Gabe!!! Here's to hoping you both are clear!! Hugs and love to you both... Aren't we all in a pickle!

Girls, girls, girls. Like I've always said, I am the queen of wimps every time I have a PET scan, CT scan, biopsy, or just anything where I have to wait for the results, so I very much sympathize with you. I will be thinking of you and pray you all have good results. I'd say, "Try not to worry," but you would all laugh at me (because I'm such a wimp). Hope to hear good news soon.
julieann

Sending hugs and wishing peace to all of you!

I highly recommend finding a "happy place" and going there when waiting gets tough. It worked for me for the 5 months of waiting between when treatment was suspended and getting the final scan.

Waiting will drive you nuts. But, try not to let it steal any more of your life than OC has already taken. Don't let the monster win.

Love to all,
Sandy
xoxox

As Tom Petty says in a song, "The waiting is the hardest part...". That's all I can hear in my head every time I experience waiting for test results. I'm sorry that you have to wait so long. The anixety is the worst for me, because I am anxious at baseline. The other day, by SO's office called to move my appointment to a different time. I saw his number on the caller ID and my heart sank/blood ran cold...so that's how bad I am! I just hope you can have some peace and relaxation during your wait. Here's to wishing and hoping for an all-clear and that this is only a nuisance.

With great care,
Kerri

Thanks everyone and Gabe, I have lots of whiteness too. The tidying up sounds good but biopsies are such fateful little monsters. I don't know if it's wimpishness or a vivid imagination that makes us fret before anything bad has actually happened! Maybe it's the lack of control: someone else has our future in a test tube ...
I've just told my school that I won't be back next year. Living with this uncertainty plus an unwell husband plus the stresses of teaching at 65 ... Time I retired anyway. Proud I taught for a whole year with half a tongue.
And yes, I'm certainly going to escape somewhere this week for some personal thinking time. I have to prepare for the worst and think of a whole lot of points of clarification if this is yet another false alarm.

Hugs - we'll wait with you!!! Vent at will! good luck!

Well, another funny development in the ongoing waiting saga ... Rang radiology at the local hospital to see if they could tell me when the ultrasound would be. The guy said he couldn't see it happening before Xmas - that's even as a priority. It requires a radiologist for the biopsy. Soooooo I thought to myself it can't be deemed that serious if such a wait is the order of the day. I'm going to Auckland City Hospital on 14 December and they should be able to tell me if the node is suspicious or not. (I hope.) Less than 3 weeks to go. And my ulcer has died down if not completely bowed out.
Funnily enough this sort of thing always happens to me even though I try to communicate clearly with doctors: I was given the runaround with my ovarian cancer and then with the first signs of oral cancer which I was told for years was just lichen planus.
Ahhh I'm going to enjoy the glorious late spring weather.

I am so glad your ulcer is clearing up - maybe that's what has gotten your node all excited too! I did some research on nodes and they can naturally be that large though location has a lot to do with it! Sometimes they swell related to infection, etc... Hoping the ulcer clears and the node relaxes well before dec. 14 - you could try calling and tell them to put you on a waiting list in case of a cancellation... Not sure how that would work with the FNA but you could try. Yesterday I called the hospital told them I had dropped off my two previous scans - march and august - asked could they please have the radiologist look at them and compare my most recent scan to them as opposed to the dec. one which they had used. I told them I had an appointment in an hour with my dr. And would like the results then if at all possible - they'd uploaded the CDs which I dropped off later the day of my scan - but no one had gone back and looked after the initial report was filed. The girl checked to see if the dr who saw them originally was in - she was so they had her re evaluate them - then faxed the addendum to my family dr. And apparently I'm clear. My family dr read the report to me. There was no note of the nodes this time - perhaps they're normal for me? I guess upon the newest comparison. They didnt note them as being highlighted or of any concern in the previous report - in fact they noted i was clear and needed no follow up but i was freaked at the fact that theyd saw them and noted it despite saying everything was normal. Ultimately he said I was clear! I couldn't palpate them to begin with. I do trust him he's terrific. I have a local ENT to call my own now so I'll chat with him when I see him, but at some point you have to trust. fingers and toes crossed for everyone here as alway but as my friend always say.. It's not luck - its blessings - and they've been given to you... So I offer them to you here as well! Hugs!

Cheryld, you sound just like me but more proactive. Clever of you to get the scans compared and I'm so glad things are looking clear for you. I love what you said about having to trust doctors at some point. I can't quite do that in my present scanario but what I have to do is get the situation cleared up, explained clearly and then figure out a way I can "go forward" without these biopsies causing me to fret so much. One of my friends is so furious about my having to wait till after Christmas for the ultrasound/FNA that I now have to calm her down. Heck, I might try to ring the ENT guy and ask if I can have a normal ultrasound of my neck before I go to Auckland.
We are both in countries with socialised medicine; cool that we don't have to pay but - in NZ - anyway, we get no choices ....

Still waitin'. Ulcer has gone - great. Now all I have to worry about is my neck. No obvious lump although today the whole neck dissection area has been unusually stiff and so I have worried about it. I'll have to wait until December 14th and maybe a bit longer but just to see the Auckland surgeon will be such a relief. My gut feeling is that there's nothing much wrong with me other than a somewhat ineptly handled follow up system and a nervous imagination. On the other hand, what do I know????

You'll be fine !!! So glad the ulcer is gone - I find my neck stiffens up too it's sometimes positional like the day after a 12 hr bus ride from NYC my neck was so stiff my acupuncturist bent 2 of his needles before stabbing me with a big one ! If you can't palpate anything in your neck you should be ok! I know it's sometimes hard to listen to your instincts (I'm still learning) but my healer - friend told me - listen to your heart where your health is concerned it will lead you - how do you feel? Other than your worry... If you feel great then your body is telling you someting! I'd had the sore in my mouth forever - id had a Biopsy - id had my tooth filed down, I'd had allergy tests I was on a special diet etc. I was going to weight watchers as I had 20lbs to lose - week 4 - I lost 4.5 lbs (now I was active and eating well - this wasn't an unusual amount). However I was suddenly overcome by this fear and this urgency and knew I had to have this sore dealt with. I was in the drs office the next day - and had it biopsied a week later and I just "knew" it was cancer. I think we sometimes feel a little betrayed by our bodies - especially I we are healthy and careful (I mean seriously I was a veg head!!!!!!) so it takes a while to trust them again. But all through my rads and chemo my head and heart were telling me to do certain things to alleviate the fallout from treatments and not only did it work -I would find out after the fact that these were things peoples drs would suggest. It's all about listening. I know this doesn't alleviate your nervousness or kick the scary thoughts out of the back of your mind - but do try to listen to what your body is telling you on a basic level. Sometimes your head over thinks things - your heart has to step up to keep it in check! That said I hear what you are saying about choices! Our system here is very similar but what a lot of people don't know is we do have choices - they just accept that your dr knows best, he will send you to the best because you are his patient etc... Well... Yes most do care - not all - often they will send to who is available - and not neccessarily the best (frankly the local hospital here only has 4 oncologists!!! Two which are not great and two of which are mediocre!) so unless you research and do your homework and learn to work through the system, you could technically be screwed! (in this case I simply told hem I wanted to be treated by this dr.at this ccc And the referral was made - and I faxed it and ALL my records and scans to this dr, myself!) and no their secretaries will not always go the extra step to push for you. - which is why I dealt with the appointments etc.
we have a great system, but it still needs some tweaking! Hav a great weekend and don't let your concern (or this disease ) erode your enjoyment of life... It can be a terrible thief! hugs!

That is why I love Mayo. Biopsy/test done, within hours you are with the Dr. and get the results. They schedule everything for you and usually the same day or within the next day or two of your initial appt. After a year and three of us in the family now as patients I can't think of one negative about this place.

Just got back from long return trip to Auckland with two friends. Saw one of my surgeons - the reconstructive guy - who said all was well and could feel no neck lump apart from a "capula" where he had joined two blood vessels. He advised me to go ahead with the ultrasound though which is booked for next week. He implied that provincial hospitals where this sort of thing isn't seen much get easily spooked. From now on I'll see someone every four months with Auckland in the middle - very reassuring.

So thanks to everyone who empathised. I hope nothing unexpected shows up in my neck - does not sound as if it's likely to.

Love to all
Maureen

Hi Maureen,
Glad to see that your gut feeling was right however all the waiting does not help with the stress especially when dealing with different hospital systems.
Best wishes for the ultrasound next week and I hope the wait for the result is not too long.
xoxo

Hugs!!! So glad you're less stressed !! good luck with the ultra sound - I hav a tiny nob in my neck from the same thing it's been there since surgery! It's like a pea! Thought it was a stitch, and it is! it's right in the scar! Tah care!

Had ultrasound today. They couldn't find an enlarged node (as I knew they wouldn't) but a couple had some "vascularity" so will check again in three months. It's a good plan but it was always just in case I had an enlarged node, not because!!!

End of a waiting period that started on 14 November. Lots of good wished for Xmas for you all.

Yeah!!!!! We ll have out waiting countdowns.. I have an ENT appointment Friday - it is supposed to be just a hello type meeting but I hav a small lump thing on my palate ... It's possible I burned my mouth (too hot tea!!! ) or jabbed it while eating but I want it looked at regardless.. (its only been there 2 days..,) So I know what you're going through... Have an awesome Christmas - you deserve it.

Thanks Cheryl. I've been thinking about you and comments. Very cheery and thoughtful ... and thought-provoking.

Have a lovely Christmas up there in the snow and ice. Brrrrr! We're moaning down here because we're having a summer cool snap of about 15 - 19 degrees.

Ugh!!! To your cold snap and you would be surprised - we've had no snow at all and winter has been mild!!! snow on Christmas is acceptable - but then it can go far away!! Have an amazing holiday.