| | Joined: Apr 2012 Posts: 7 Member | OP  Member
Joined: Apr 2012 Posts: 7 | 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
| | | | | Joined: Apr 2012 Posts: 15 Member | | Member
Joined: Apr 2012 Posts: 15 | 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.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | 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 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | 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.
| | | | | Joined: Apr 2012 Posts: 7 Member | | OP Member
Joined: Apr 2012 Posts: 7 | 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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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?
ChristineSCC 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  | | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | 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.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | 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 III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Apr 2012 Posts: 7 Member | | OP Member
Joined: Apr 2012 Posts: 7 | 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
| | | | | Joined: Apr 2012 Posts: 7 Member | | OP Member
Joined: Apr 2012 Posts: 7 | Hi Connie,
I'm 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 recommending 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
PS my husband is from Buffalo and has been to Lockport many times
_________________________
TheresaAnn
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Any hospital can say it is a center for cancer. They can NOT just call themselves a Comprehensive Cancer Center. It is a well earned title which is not easily achieved.
Per About.com.... A comprehensive cancer center is an institution that has been designated by the National Cancer Institute (NCI) as a center of excellence for cancer care and research. Institutions have to apply for designation as a comprehensive cancer center and renew their status every three to five years. According to the NCI, there's no difference in the quality of care provided by NCI-designated "cancer centers" versus NCI-designated "comprehensive cancer centers."
The NCI uses the term "comprehensive" to indicate an institution offers state-of-the-art care and services that include a strong research base along with a variety of prevention, care, and educational activities that serve the community. The NCI provides a list of comprehensive cancer centers on its website.
Your facility could be ok, I mean no disrespect to that facility. Of course its completely your choice where you want to get treated. My concern is your history would show that your case could be a complicated one since its been ongoing for so long. Oral cancer can be a fast moving, deadly disease that needs to be taken very seriously. We have lost far too many good people who after it was too late would say "I should have gone to a CCC". The very best thing you can do is make an informed decision. Please dont rule out a second opinion from a CCC like Moffitt.
Best wishes!
ChristineSCC 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 | | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Hi Theresa,
When I was given a choice where to go to they were, Moffitt Cancer center, a Dr. in Miami I can't remember his name and M.D. Anderson, Shands never came up. I'm not saying Shands isn't the place to go it's that we live in FL near the best of the best Cancer Centers take advantage of it. Give Moffitt a call you can talk to someone there they are very very helpful. If I were you I'd get a second opinion.
I went to 5 different Dr.'s before Moffitt and I got 5 different opinions on what should be done. I was hysterical listening to some of the things they wanted to do and I was only in the beginning of Stage 1.
Look at Moffitt's website I think they have phone numbers of people you can call to ask questions. The snowbirds have gone home it might not take long to get in and get a second opinion.
It's nice to hear someone on here is from the Buffalo area, I miss Lockport I call it Mayberry. I'm moving back in 3 years right now I have a committment here.
Another thing, if what's on your mind about traveling to Tampa after the surgery for radiation and chemo they will work with the Dr.'s in your area who do radiation and chemo you won't have to travel to Tampa for that. Travel was on my mind if I had to have it and that's what I was told.
Take care, keep us posted.
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.
| | | | | Joined: Apr 2012 Posts: 7 Member | | OP Member
Joined: Apr 2012 Posts: 7 | I just looked up Shands and they are a CCC. Still go for 2nd opion at Moffitt?
TheresaAnn
| | | | | Joined: Apr 2012 Posts: 7 Member | | OP Member
Joined: Apr 2012 Posts: 7 | Thanks COnnie, I'm going to call Moffitt today.
TheresaAnn
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Glad to hear Shands is a CCC. Sorry! I dont have the list memorized, I hear the same old names all the time...Moffitt, MD Anderson and John Hopkins. Glad to hear you will still check out a 2nd opinion at Moffitt.
Good Luck!!!
ChristineSCC 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 | | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 126 | There are a few of us on here that have had a tumor of the palate and now have an obturator. Feel free to send a personal message with any questions.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Apr 2012 Posts: 7 Member | | OP Member
Joined: Apr 2012 Posts: 7 | I would like to send a personal message, how do I do that?
TheresaAnn
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Hi Theresa - Just wanted you to know that we have been dealing with Shands for years and were very happy with my husband's treatment. His first doctor was Dr. Villeret (sp?) but he left a few years ago for the Carolinas - we miss him dearly. Dick had been seeing Dr. Cohen and we were pleased with his in depth examinations and follow-ups also. However, we now stay close to home in Sarasota for his exams because of that 3 hour drive and satisfactory check-ups. It's not to say we won't go back to Shands if needed, however, as I admire and respect their oral cancer program and doctors. Dick has had extensive surgeries in the past (at Shands), including a neck dissection, but never needed radiation or chemo because his cancers were caught early and hadn't spread. Please, if you have questions, don't hesitate to ask.
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)
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | If you have a post by the person you want to PM, click on the poster's name; from the dropdown box, choose Send a PM. If the poster does not accept private messages (not everyone does), there is usually an e-mail address listed in his/her profile (accessible through that same dropdown box, or just go to User List at the top of the page). You can also send a PM through that profile page.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Hi, Theresa -
I had half my palate removed three years ago and have had an obturator (a few!) since then. Feel free to write with ANY questions or worries --
-Chris
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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