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#10691 05-21-2007 06:55 AM
Joined: May 2007
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Am just feeling shell-shocked right now--having been 'hanging around' for months now for tests, suddenly I had an MRI scan last week, and got an appointment for ENT clinic for 21/5/07. Suddenly phoned at lunch today--could I attend clinic today? Managed to bunk off for the afternoon and returned home a couple of hours later bemused after a new jaw x-ray, then half an hour 'on the slab' having tissue biopsy (with local!) and stitches.
Everything just seems to have happened so fast
Can anyone tell me if they can tell primary/secondary from the tissue biopsy? He said he got 'a good specimen'!!!
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#10692 05-21-2007 06:03 PM
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Brenda....Hello...

I am sorry you are having to consider this path, but if so, this board will be the best resource you could ever imagine!!

Now, I am confused, so forgive me if you've already answered this.

You ask about primary/secondary...these are terms used to define particular tumors AFTER a definitive cancer diagnosis (I think)....

Can you tell us more about you? Age? Risk factors, etc?

Just curious. How long before you get the pathology reports back from the biopsy?

Things might feel like a whirlwind right now, especially after seeming like you had to wait so long, just remember that medicine can be like this -- mainly because they are all doing these same whirlwind things for the patients ahead of you, that also had to wait smile

You'll be in my thoughts and prayers!


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#10693 05-21-2007 09:55 PM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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Hi Brenda
Robin had a primary and a secondary tumour and they identified those at biopsy.Like you, we went from seeing the GP on November 24th, Phone call from the hospital the next day ,ENT Dec 4th (fine needle biopsy on neck lump done in clinic),phone call from the hospital again a few days later,Tongue biopsy done Dec 18th
(at which time we were told they had found cancer cells in the the needle biopsy results).When he came back from surgery they had actually removed the tumour on his tongue and part of his tongue.Then hospital one week later to be told the pathology showed the tongue tumour was the primary and the neck tumour was a secondary.An MRI scan was booked for Dec 28th and we got a phone call from the hospital on Dec 30th.At this appointment we saw the multidisciplinary board and they explained what the plan was going to be and he went into hospital on Jan 13th for his major surgery.

So, all told from diagnosis to surgery was only six weeks.We felt like a whirlwind had hit us ,and the only way we stopped from being too terrified was the speed that everything happened.So take heart Brenda the national health service hasnt completely gone to hell in a hand basket and when needs must it shows us all how it can perform when the need arises.

I live 8 miles north of Leeds where there are plenty of specialist cancer units.Rob lives in Hampshire and there was only one we are just lucky it was the best it could be.


Good luck Brenda and if you need an ear mine is available

Regards LIZ in the UK


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#10694 05-22-2007 12:14 AM
Joined: Jul 2006
Posts: 446
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Brenda
It does seem like a whirlwind sometimes, doesn't it?

I was diagnosed May 1,2006 after a biopsy in clinic by an oral surgeon. He was able to determine that the tumor was the primary from that biopsy.

On June 5th I had 17 hours of surgery and had all of the reconstructive work in my signature done. Between the two dates, my wife and I spent every working day for at least 6 hours a day going from one medical appointment, lab test or consultation to another.

By the thried week of May, everything was done. All the tests, consultations, pre-admission testing were finished and I just had to wait for surgery.

That became the longest two weeks of my life! I couldn't sleep (pain and anxiety played roles) I was irritable, jumpy and nervous.

It got so bad that I would take sleeping pills, doze off and then wake up again in 3 hours and prowl the house. We have 4 Chiness Pugs; when I got up, they got up, and the shambled around the house behind me, bumping into things because they were half asleep.

Of course, most nights the clatter woke up my wife, so by the time June 5th finally rolled around, we were all ready for some sleep.

I caught up; after surgery, I had a coronary and wound up in ICU in a coma for 8 days. for my wife, much of her sleeping was done on hospital couches.

It does seem to speed up to light speed, but it will slow down soon...try and get through each day as it comes
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#10695 05-22-2007 06:58 AM
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Thank you so much, all! Hardly slept last night for the pain, the touch of the oh, oh, this speed must signal bad news, and the fear of a bleed!
I also feel like such a wimp because I shook all the way through the procedure and hate pain and knives, yet am also consumed with guilt because it's self-inflicted--heavy smoker and drinker, age 57 (MIGHT make it to 58!)mouth biter, love searing hot food and drink, ditto ice-cold--you name it, I tick the boxes! I think diagnosis is a mere formality when the results come back from the biopsy--am TERRIFIED--and it's all my own fault!
A regretful (and grateful to you guys)Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#10696 05-22-2007 09:13 AM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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Brenda cancer is no ones fault!!!Life is a lottery and when we choose to do things that might result in an illness like oral cancer some people are not going to get away with it and some are.Unfortunately their is always a percentage of people who dont.If your biopsy results show you are one of the unfortunate the last thing you need to do is look for someone or something to blame,it wont make it go away and you will need all your strenght to stand up to it and fight.so look forward not backwards,and dont think the worst till you know for sure.

LIZ


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#10697 05-22-2007 09:52 AM
Joined: Sep 2006
Posts: 8,311
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Brenda,

1. You people sure do talk funny over there;

2. It's not cancer until they say it is; and

3. Stop beating yourself up over something that can't be changed, even if it is cancer.

This site is devoted to helping and educate people that have oral cancer. If you find out that it is cancer, this is the best place for you. If you don't have cancer, then you really don't want to be here.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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