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#99132 07-09-2009 06:25 PM
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Over the past few weeks I have had a few sore places in my mouth from having my teeth removed. These spots had to be snipped a couple times by my oral surgeon. They never healed which made me concerned enough to have my ENT check this out. I was put on antibiotics and offered a biopsy. Immediately I knew that they must have seen something that was unusual. Of course I had the biopsy done and the results are SCC. I was shocked, just like last time. I do not feel one bit sick other than the sore mouth and a little tired.

The PET results show cancer on my top jaw but not on the bottom jawline where the biopsy was done. That isnt even large enough to light up. The good news is that this is Stage 1. This is the third time I have been diagnosed with having cancer in 3 years. Luckily, everytime it has been Stage 1.

At this point my ENT said he wants to get a plastic surgeon on board before he can even begin to set up a plan. He wants me to be ready by mid August. It will be about 2 weeks in the hospital and minimum 6 months of recovery. This can change as there are so many variables as to the extend of the cancer when he begins the operation.

I refuse to sit around and feel sorry for myself for one minute! Cancer has taken 3 summers away from me. From here on out, I am making the most of the next few weeks before this new chapter in my life begins.



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 #99133 07-09-2009 06:38 PM
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Oh sh*t, Christine... I saw the note in your signature line the other day, but wasn't sure what it meant. You have no idea how sorry I am to hear this. I wish there was something meaningful that I could do to help you through this.

Crap.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
margaret_in_ma #99134 07-09-2009 06:41 PM
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I am so glad you posted this Christine, It was getting to me big time. I still don't really know what to say. But you know my mouth will move after the shock is over You are my best buddy. You actually have been since we talked the 1st time. Or pmed.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
margaret_in_ma #99135 07-09-2009 06:45 PM
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Christine - You always have the most encouraging words for everyone else in here, now we are going to give nice words back to you as you fight yet another round. My husband has had 4 rounds and we are hoping he is done, so our prayers and hopes go to you for this to be the final time you will have to deal with this monster and you can finally enjoy many summers to come! Hugs nice lady.


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
Lostpassword #99140 07-09-2009 07:57 PM
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Thanks for the support smile
I appreciate it very very much!!!!!

Margaret, it was so nice to meet you last year. Wish we could have had more time to chat. You amazed me by your ability to eat so soon after finishing treatments.

Jim, my pal. Dont you worry...I still owe you a steak dinner! Next year after you are finished with your surgery and Im healed from this setback the steak is on me smile

Lostpassword... Thank you so much for writing. It is so encouraging for me to see that soemone has gone thru this 4 times. Im so sorry your husband has had to do this that many times. He is proof it can be done!!!! Hope he is doing well and no more recurrances for him EVER.


I wont lie, Im scared. Getting a PEG tube and a trach is going to be difficult. I hated that darn tube more than anything else in my whole life. Facing life as someone who will have disfiguring facial scars is going to be rough. The big picture is that I can and will overcome this and move on as a better person because of all 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
ChristineB #99142 07-09-2009 09:01 PM
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Christine

I am truly sorry to hear the outcome of your tests. You have had to deal with so much because of this horrid disease.

We are here for you. Fortunately your vigilance and awareness of this disease has probably put you in a very strong position of getting it under control swiftly.

The way that you have continually supported so many people on this forum since I started visiting here has been incredible. I can't see how you could become a better person than what you already are, you're a tower of strength to so many people. We are here to return the strength and support to you as you face the next challenge.

You will get through this.

Karen xx





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 #99145 07-09-2009 09:35 PM
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Well Christine - this sucks. I am very thankful it is at such an early point and that they are moving ahead fairly quickly with treatment plan. You've been there before and you will get through this - I just know you will. I feel nothing but good karma around you. You are a positive person and that (plus us of course) will help you to do what you have to do to get rid of it - AGAIN.

I remember one doctor telling me that for some people, cancer can be a "chronic" illness. You get it - take care of it - and repeat.

How grateful I am that you were on top of this. We NEED you.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Pandora99 #99148 07-09-2009 11:45 PM
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Posts: 1,940
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Hey Christine
I remember you joining this forum as if it was yesterday.The best news is that you are still here,the hardest thing must be the continual WHY ME?.This go round sounds as if it could be a tough one sweetie,and i send love,strength and guardian angels across the pond.

much love 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.
Cookey #99149 07-09-2009 11:54 PM
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Posts: 88
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Hello Christine,

I am so sorry to read about your news but it seems you are really diligent and knowing yourself and catching it early but it really sucks to get those kind of results. I so worry about that for my daughter. My prayers are with you and please take care of yourself, I hope you have a good caregiver to help you through this round. God bless, love and luck.

Bonnie


CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years

2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
Bonniey #99178 07-10-2009 05:32 AM
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Christine,
Sorry about your PET results. Good they caught so early and that you wre diligent enough to tak them to do a biopsy on the sores. You have always been so encouraging to me, when I was having my "pity party." I am actually doing a lot better now. We are going to deal with whatever life throws at us and hit it head on. You have and will continue to be an inspiration to me. I will praying for you.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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