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#148392 - 04/17/12 02:43 AM Re: Hi, I'm Theresa [Re: ConnieFL]  
Joined: Apr 2012
Posts: 7
TheresaAnn Offline
Member
TheresaAnn  Offline
Member

Joined: Apr 2012
Posts: 7
Florida
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
#148393 - 04/17/12 02:56 AM Re: Hi, I'm Theresa [Re: TheresaAnn]  
Joined: Jun 2007
Posts: 9,540
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,540
PA
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!


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
#148407 - 04/17/12 10:46 AM Re: Hi, I'm Theresa [Re: ChristineB]  
Joined: Apr 2009
Posts: 329
ConnieFL Offline
Platinum Member (300+ posts)
ConnieFL  Offline
Platinum Member (300+ posts)

Joined: Apr 2009
Posts: 329
Fort Myers, FL, Lockport, NY
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.



#148408 - 04/17/12 10:50 AM Re: Hi, I'm Theresa [Re: ChristineB]  
Joined: Apr 2012
Posts: 7
TheresaAnn Offline
Member
TheresaAnn  Offline
Member

Joined: Apr 2012
Posts: 7
Florida
I just looked up Shands and they are a CCC. Still go for 2nd opion at Moffitt?


TheresaAnn
#148409 - 04/17/12 10:55 AM Re: Hi, I'm Theresa [Re: ConnieFL]  
Joined: Apr 2012
Posts: 7
TheresaAnn Offline
Member
TheresaAnn  Offline
Member

Joined: Apr 2012
Posts: 7
Florida
Thanks COnnie, I'm going to call Moffitt today.


TheresaAnn
#148419 - 04/17/12 05:09 PM Re: Hi, I'm Theresa [Re: TheresaAnn]  
Joined: Jun 2007
Posts: 9,540
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,540
PA
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!!!


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
#148440 - 04/18/12 01:53 AM Re: Hi, I'm Theresa [Re: ChristineB]  
Joined: Sep 2009
Posts: 126
wheels Offline
Senior Member (100+ posts)
wheels  Offline
Senior Member (100+ posts)

Joined: Sep 2009
Posts: 126
Indiana, USA
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.
#148497 - 04/19/12 02:15 PM Re: Hi, I'm Theresa [Re: wheels]  
Joined: Apr 2012
Posts: 7
TheresaAnn Offline
Member
TheresaAnn  Offline
Member

Joined: Apr 2012
Posts: 7
Florida
I would like to send a personal message, how do I do that?


TheresaAnn
#148499 - 04/19/12 02:53 PM Re: Hi, I'm Theresa [Re: TheresaAnn]  
Joined: Jul 2006
Posts: 388
Lostpassword Offline
Platinum Member (300+ posts)
Lostpassword  Offline
Platinum Member (300+ posts)

Joined: Jul 2006
Posts: 388
Florida
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)
#148500 - 04/19/12 02:57 PM Re: Hi, I'm Theresa [Re: TheresaAnn]  
Joined: May 2006
Posts: 719
Leslie B Offline
"Above & Beyond" Member (500+ posts)
Leslie B  Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2006
Posts: 719
Washington DC
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.
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