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#148334 - 04/16/12 12:04 AM Hi, I'm Theresa
TheresaAnn Offline
Member

Registered: 04/15/12
Posts: 7
Loc: Florida
Hi,
I have been following my "white spots" for over 20 years and last week one of the spots was biopsied and came back cancer. After a scan they discovered I had a tumor that started in the palat and worked its way upward through my jaw and up near my cheek bone. I am so overwelmed with the news!!!!!!!!!!!!!! I have to have some major surgery and I'm scared to death. I'm so happy to find a website to get support!
_________________________
TheresaAnn

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#148335 - 04/16/12 12:16 AM Re: Hi, I'm Theresa [Re: TheresaAnn]
robindini Offline
Member

Registered: 04/14/12
Posts: 15
Loc: Connecticut
Hi TheresaAnn.

I'm so sorry to hear of your diagnosis. Yes, it is incredibly scary to hear the word cancer, especially when something that you've been following for years has always been "nothing". I went through something similar.

It's perfectly okay to be scared and it's good to ask questions and reach out. My best advice would be to take time for yourself to gather information and find peace in knowing that you're going to be okay. Positive thoughts and strength within yourself and those that surround you will get you through it.

We're all here for you.

xo
_________________________
neg lesion biospy 1/2007; lesion found 3/2011; baby boy 5/3/2011; biopsy 10/2011; diag. 10/17/2011 T2,SCC tongue; 10/25/2011 part. glossectomy 50% tongue rmvd w/muscle; 11/29/2011 neck dis; HSP 12/3/2011 infection of incision; 12/5/2011 29 lymph nodes negative for cancer. No chemo/radiation.

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#148340 - 04/16/12 12:48 AM Re: Hi, I'm Theresa [Re: robindini]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Hi TheresaAnn,
I'm so sorry for your bad news. You have definitely found a place for love and support throughout your treatment. We have all either been there or been caregivers for our loved ones so we know first hand how it will be for you.
I am not familiar with your particular cancer, but there will be others who are. I do want you to know we are here for support though. Where are you being treated?
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#148343 - 04/16/12 12:56 AM Re: Hi, I'm Theresa [Re: KP5]
ConnieFL Offline
Platinum Member (300+ posts)

Registered: 04/16/09
Posts: 329
Loc: Fort Myers, FL, Lockport, NY
Hi Theresa,

I'm sorry to hear you have Oral Cancer. You found the right group to ask questions. They will help and be with you from the beginning.

I see your from FL are you going to Moffitt Cancer Center for treatment? If not you might want to check out their website online. That's where I went to have my surgery they are the best.

Hope all goes well for you....your in my thoughts and prayers.

Connie
_________________________
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.




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#148344 - 04/16/12 01:16 AM Re: Hi, I'm Theresa [Re: ConnieFL]
TheresaAnn Offline
Member

Registered: 04/15/12
Posts: 7
Loc: Florida
Hi Connie,

I am going to UF/Shands in Gainesville. They have been following me for the last 5 years. Have you heard about Shands?
_________________________
TheresaAnn

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#148350 - 04/16/12 01:51 AM Re: Hi, I'm Theresa [Re: TheresaAnn]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4907
Loc: Toronto canada
Hi - and welcome - sorry you have to be here but this is a great place for information Iand support. I'm not American - but I can tell you what a bunch of others here will likely say... Go to a CCC - it sounds to me like your cancer has been there a while... If these guys have been treating you for 5 years and didn't catch it... Well frankly I'd be worried, moffitt has a good reputation. I may not be close to home but you're worth the effort to get the best treatment. forgive me if Shands is a ccc - I'm not sure but you should be treated at a place that sees this kind of cancer all the time, and that would be a ccc - there are others here who've had ca of the palate etc... I'm sure they'll be along... best of luck, and try not to freak out worrying won't help, educate yourself, (which I know is scary) ta will help. I found knowing what to expect really helped. Take care and we're here when you need us.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148356 - 04/16/12 04:43 AM Re: Hi, I'm Theresa [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8397
Loc: PA
Welcome to OCF Theresa! Glad you have found this site to help get you thru the upcoming rough patch. It wont be an easy road but you will get thru this. I would suggest you get all your records together and RUN to a cancer center. This is NOT to be taken lightly so you need to give this the best chance of proper treatment the FIRST time. Take it to a place where they are the experts. Your cancer is not that common so you will need an experienced team. Check out a cancer center, what do you have to lose?
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148363 - 04/16/12 10:33 AM Re: Hi, I'm Theresa [Re: ChristineB]
ConnieFL Offline
Platinum Member (300+ posts)

Registered: 04/16/09
Posts: 329
Loc: Fort Myers, FL, Lockport, NY
Theresa,

Yes, I've heard of Shands. I went to Moffitt in Tampa because of their good reputation. I drive almost 2 hours to get there but to me it's worth it.

I agree with Cheryl you've been with them for 5 years and they didn't catch it it's time for another opinion.

Keep us posted take care,
Connie
_________________________
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.




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#148373 - 04/16/12 09:16 PM Re: Hi, I'm Theresa [Re: ConnieFL]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1267
Loc: Los Angeles
TheresaAnn - so sorry to hear your news but glad you've found us. We'll be here to help in any way we can. The suggestion to visit a CCC is a good one. I live in California but everyone here who lives in Florida and has been treated at Moffitt speaks extremely highly of the place and its medical staff.

Please keep us posted. Sending all the good vibes your way.
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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#148390 - 04/17/12 02:39 AM Re: Hi, I'm Theresa [Re: Cheryld]
TheresaAnn Offline
Member

Registered: 04/15/12
Posts: 7
Loc: Florida
Hi Cheryld,

Not sure if Shands calls themselves a CCC but they have been treating oral cancer patients for a long time. They have a tumor board that reviews each case. My last biopsie was 8 months ago, results showed pre-cancer. I was due to go back in 3 months but my son got sick and went in to the hospotal and then my mom got sick and was in the hospital after that.

They are recommended that I have the left half of my palete removed, the top left jaw and teeth, and then I will have a obturator fitted. I also have 2 tumors on my neck that will be removed and lymphnods around to be checked for cancer.

If anyone has read about someone on this site that has a similar situation please let me know their name and be able to ask them questions.

Thanks
_________________________
TheresaAnn

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