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#102005 08-21-2009 03:58 PM
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AmyK Offline OP
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On Monday I went to my regularly scheduled appointment with my ENT. I was perpared to drive 60 miles one way for a 10 minute appointment. Talk about the trush I'd been fighting for the last two weeks and leave. This is not how it turned out at all.
He found a spot that was not there six weeks ago. He was able to do a biopsy. I'm not sure how he got into my mouth. My trimus has gotten worse over the last few weeks. (I guess that was another sign) He told me while I was in the office that he didn't think it was going to be very good at all.
On Wednesday, while clothes shopping with my 15 year old I got the call. It's possitive. As of right now, my schedule looks like this I have a CT on Monday the 24th, a follow up the with ENT on Tuesday and surgery on the 31st. I don't know what kind of surgery or what will be done. To tell the truth at this point I don't even know if there's a point to doing the surgery. We'll know more after the scans come back.
Amy


40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
AmyK #102006 08-21-2009 04:27 PM
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Amy...

I am so terribly sorry that you have a recurrance. It really stinks to say the least.

I also have severe trismus. Even without teeth I cant open my mouth wide enough to get a complete exam. Where exactly is the spot? What did the doc say about the surgery? This sounds like the whirlwind that I went thru with my 2nd round. Within 2 weeks of finding the spot I was having surgery to remove it.

DONT YOU DARE say you dont know whats the point!!!!! I feel so sad when you talk like that. We all depend on each other to get thru this. It can be done, please dont let this awful disease beat you down. Please vent all you want here we will support you. We are here no matter what your decision would be.

Wishing you the best possible outcome to this.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
AmyK #102007 08-21-2009 05:20 PM
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Amy
As you know, I actually have had a recurrence, so let me give a little "tough love" here. The point of the surgery is that you have a 15 year old who does not want to lose his mother. But don't think I do not hear you. When my ENT told me about the surgery I needed and the consequences, the very first thing I asked was "and what happens if I don't get it?" Her answer (which is probably not what a male doctor would have said) was
"In my opinion, you would be a foolish husband and father - but it is your choice" Now I am over 2 decades older than you and if my tired old self is worth saving with surgery, then certainly a young woman like yourself deserves and needs every extra year that surgery can bring.
This sucks big time and is very very unfair. so I know that you are venting and that's okay. Vent away here where you won't hurt or worry your family.
You are entitled to a pity party and I know I wallowed in it after my recurrance. Keep the faith Amy,
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #102008 08-21-2009 06:02 PM
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AmyK Offline OP
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Opps. Didn't make my point well. Again.
My not know what the point was, is simply my way of saying that without the scan results I wont know how advanced the cancer is. Thus, I would not know if there is a point. There are several other things going on that I hadn't paid attention too that know have me very worried. For one, I have had a headach for the last two weeks. Same spot everyday. I thought it was just my sinuses. Maybe it still is just my sinuses. Maybe not. I have also had some stapping pains under my arms, didn't even think about that being anything, but what if has once again entered into my volcabulary. Of course I will fight, I've never just rolled over and not faught. I just need those results to know how much fighting will be required.


40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
AmyK #102014 08-21-2009 07:04 PM
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Posts: 1,128
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Since you've been getting regular checkups, and more importantly are aware of things changing, the odds are pretty good that you've caught it in plenty of time.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
AmyK #102018 08-21-2009 07:33 PM
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Amy

It is true that a point eventually comes when there is no point to further surgery, so I now see what you were trying to say,
We were just worried about you as I know that I seriously considered just skipping the surgery as I felt the cancer was just going to come back again anyway. Hope the scans turn out well,
On a totally different note, maybe you should buy a lottery ticket as you are now the first HPV positive poster to have a recurrence. The odds against that happening have to be similar to those of winning the lottery.
Seriously, my wife and I both cried when we read your post
It's just too too sad to think about but sometimes bad things happen to good people and I will never figure out why
We will add you to our prayers
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #102019 08-21-2009 07:47 PM
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Amy
Im glad to see I misread your post. Having a recurrance is awful thing to happen. Not knowing whats going on and how bad it is can be torture til you find out.

Pete hit the nail on the head when he wrote, with your regular check ups it was probably caught early. Since you have gone thru this before, you know what to expect which makes you ahead of the game already.

Please continue with your routines, dont let cancer steal your time. Sending lots of prayers your way smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #102021 08-21-2009 08:12 PM
Joined: Aug 2009
Posts: 207
"OCF Down Under"
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Amy, put your hands out to catch the loving thoughts & prayers coming your way from Australia...you'll get through this....

Jeanna


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
Jeanna F #102024 08-21-2009 08:46 PM
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Amy,

I am so sorry that you have to deal with this again.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Karen Rose #102026 08-21-2009 10:55 PM
Joined: Feb 2007
Posts: 1,940
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((((hugs))))


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.
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