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Joined: Aug 2011
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Dear Izman,

You mentioned that you do not have dental insurance, but this all should be covered by medical insurance if you have it. If you do not have either type of insurance, some hospitals have free-care programs for qualifying low-income households. Like many have said, don't let finances determine how you go about things. There are ways to make it work. Just do first things first and have an excisional biopsy for an accurate diagnosis.

My excisional biopsy was done by an oral surgeon to whom my dentist referred me. It was done under local anesthesia and I was given pain meds thereafter. Thankfully, it was done this way because it was very painful when the anesthetic wore off. The area required sutures. He took a specimen about the size of a garbanzo bean (chick pea) and sent it off to an independent lab that deals with oral specimens. The lab billed my medical insurance separately from the oral surgeon since they were independent doctors/pathologists.

When the diagnosis came back positive for squamous cell carcinoma of the lateral tongue, the oral surgeon called around to his contacts in the Boston hospitals to find out the best doctor in treating my diagnosis. They had set up an appointment for me the very next day. I am forever grateful to him for doing that legwork for me. In fact, he did it all the day before he had me come into the office to give me the bad news of a cancer diagnosis. So, I had everything in place right away and didn't have to wait. This is where going to an ENT/head & neck cancer oncologist at a CCC (comprehensive cancer center) would be ideal. Everything under one roof and runs like a well-oiled machine.

ConnieFL on this forum has had treatment at Moffitt and has been very happy with it. I would suggest looking her up on this forum should you have any questions.

Best wishes for good health,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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izman Offline OP
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I want to thank you all so much, this info while over whelming is very helpful.
so it seems moffit is best in tampa, and the questions are wonderful
i really appreciate all the advice. it is so much info to try to get your head around...

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izman Offline OP
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how would i get ahold of connieFL on the forum please to ask her about moffit?

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You can send her a personal message. Click on her name by a post and choose send a PM from the drop down. If I remember correctly. I haven't done it many times.


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
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Izman,

If you go to Moffitt your in good hands. Call ASAP to make an appointment the snowbirds are here it might take time to get in. You want to make your appointment with ENT Cancer Dept. This is their number 813-745-8460.

What I've read you haven't had a biopsy if not get one soon. Take all your records to Moffitt plus the Disk from your CT/PET Scan. I had everything together when I went.

Look for a good ENT Surgeon who does biopsies in your area and ask him to do a CT/PET Scan. This way you'll have everything in your hand when you go to Moffitt. As far as I know you have to have all this done before going there unless they changed it.

They'll read everything and look at the DISK, they want to read the DISK themselves. You'll go from there with them.

It's a wonderful Cancer Center. I have Dr. Thomas McCaffrey his wife is also a Dr. there.

DavidCPA also goes there his cancer is different from mine.

Hope all goes well with you, 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.



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izman Offline OP
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Connie and everyone thank you so much for the info!

What do you mean CT/Pet scan. right now i just have a very small white lesion on my tongue, the dentist sent me to a peri who wanted to do a brush biopsy. I am trying to decide between that and a incisional biopsy. Also I have no insurance so I have to pay cash.

My Ideal would be an experienced ENT that has seen dozens of these and knows what to look for and could look at what i have and tell me
1) its not an issue and could do watchful waiting or
2) lets biopsy that now and can do it then and well with good lab access.

That is my idea outcome. Am i asking dumb/ wrong questions or being naive ?

all constructive comments and wisdom welcome,

Respectfully,

Izman

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You are NOT being naive! But do take the advice we give you seriously, we speak from experience. Please go back to page 1 of this thread and read the post I wrote to you on 2/28. I added links to help you. The diagnosis link will explain alot of info about biopsies. It tells you the difference between a brush biopsy and the incisional one.

A brush biopsy will only have to be redone if something turns up questionable. You are correct to get a regular incisional biopsy. An experienced ENT, oral surgeon or even a few dentists can do the biopsy.

Be proactive and be your own advocate!



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
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You don't have Dental insurance but you do have health insurance that's the way I read it.

Go to an ENT Surgeon who does biopsies you want the incisonal one NOT the brush. You want a CT/PET Scan to see if cancer is in your lymphnodes (neck). This travels and it travels fast don't sit on it.

Then when you have everything back from the ENT and the labs and IF you do have cancer you have all your records in hand with you when you go to Moffitt. Moffitt will read them and go from there.

You don't need a Dentist to do this your Health Insurance will cover it when you go to an ENT.

Get this done soon!!! If I had known about this forum way back things would have been different with my cancer, I'm sure of it.I was jerked around from this Dr. and that Dr. until I heard about Moffitt Cancer Center.

Get to it..

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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