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Joined: Aug 2011
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Hi and welcome. It's great that you have sought support and information. This is a terrifying time for you, your husband, and loved ones. I'm sorry this is happening to you at all. If the biopsy comes back positive, ChristineB can give you a link to all of the CCCs in the country (hospitals that specialize in CA treatment). HOPEFULLY, YOU WON'T HAVE TO DO ALL OF THIS, BUT JUST IN CASE...

Get all of your ducks in a row with medical records, test results, slides from pathology, etc. and get to a CCC. Don't mess around. You'll need an appointment immediately for a consult with a specialist. My surgical oncologist is an otolaryngologist (ENT) who is a head and neck cancer specialist. Once you consult with said specialist, a whole multidisciplinary team will get the ball rolling with a treatment plan. This is what they do...and they are good at it. Your head will spin, but they will hold your hand each step of the way. Get yourself a big 5-subject notebook and make it your cancer bible. Take it with you to every appointment, have it handy for every phone call, and write down every question/concern you have as soon as you can. Otherwise, all of the information will overwhelm you and you will have a hard time remembering. I used the divided sections to separate the different specialties and put tabs in each section. It might be a little much for some, but for me, it was the only thing that made me feel like I had any control over what was happening.

The last thing I want to do is overwhelm you. Like I said, hopefully I'm typing this all out for nothing. When I was suspicious that I had OC and was waiting for an appointment with an oral surgeon for a biopsy, I found the OCF website. I started to read through it and I was terrified! I actually didn't return and join these forums until I was four months post op and had a scare with an enlarged lymph node. I ended up being fine, thankfully, but I am so glad that I came back when I was ready. The people here are your lifeline when you are dealing with OC. There are so many caregivers on these forums. Sometimes, I have trouble remembering who is a patient and who is a CG! We are all here for you, for any reason. Another good thing is that there are many folks here from Australia and the UK...different time zones, so you may find someone contact in the wee hours of the night when you can't sleep and might be worried.

Please keep us posted. Best of luck in the coming times.

With great care,
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!
Joined: Jan 2012
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TO everyone, thank you so much, you have all given me hope... I was definitely panicking but your words have helped so much! To clarify, the doctor who had never seen it before is NOT the one treating. He referred us to someone else, who is a specialist in this.And yes, after all the various tests he is doing this week, next will be biopsy, next week most likely. Which will tell them definitely. Sorry I wasn't very clear before.


Cheryl, CCC is a cancer care center? and OC...by that you mean oral cancer?

Maria and Kathy, it is so great to see other caregivers here. I know I will have many questions for you.

DavidcPA, i noted the mention of Moffitt in Tampa: the specialist treating my husband did his fellowship there.

you are all terrific. thank you so much for the support and kind words and good thoughts!!

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Yes, OC = oral cancer.

CCC is short for "comprehensive cancer center" -- meaning a facility where specialists from a variety of areas (surgeons, chemo docs, radiation docs, etc.) meet as a multidisciplinary team and jointly decide on a treatment plan for each case -- a "comprehensive" approach, as it were. CCCs see a large volume of cases and specialize in cancer, while your local ENT may see only one or two OCs a year (if that) and also takes out tonsils, puts in ear tubes and does nose jobs, among other things.

You'll see references on these boards to NCI-designated comprehensive cancer centers and cancer centers. In this context, the differences between CCC and CC have to do solely with research interests (broader in the case of NCI-designated CCCs), and both do take a multidisciplinary approach to patient care. Institutions apply to the National Cancer Institute for the right to be called "NCI-designated" -- it is a lengthy process that involves a lot of paperwork. About 20 leading US cancer centers are also members of the National Comprehensive Cancer Network; together they devise the treatment protocols that are updated annually and used by hospitals across the country.

You'll find a list of commonly used abbreviations (and their explanations) here. Be sure to check out the main Oral Cancer Foundation site, which has a wealth of information. And remember, there are no stupid questions on these boards, so ask away!


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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Great info, Leslie! You summed it up very well. You should save that and post it to others should they need the info...unless you've already done so smile.


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!
Joined: May 2006
Posts: 720
Likes: 1
"Above & Beyond" Member (500+ posts)
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Joined: May 2006
Posts: 720
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I've been known to recycle my earlier posts. wink


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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thanks, all good info smile

we have a biopsy date - feb 16. Then I will know more about what we are facing.

thanks to all of you

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"OCF Canuck"
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That's a long time for a biopsy date... By the time you get your results it could be march... frown try to push and see if you can get something earlier! Good luck!


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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I agree with Cheryl on that one. You shouldn't have to wait that long for a biopsy. They should be able to squeeze you in. It could take 7-10 days for the results. If it turns out to be OC, every week is precious time. Best of luck!


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!
Joined: Oct 2011
Posts: 805
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Joined: Oct 2011
Posts: 805
I was thinking the same thing. Not really acceptable considering the circumstances. I will tell you that Kevin procrastinated for about 6 weeks longer than he should have because he thought I was overreacting. By the time he had his biopsy it had metastacized to many lymph nodes.
Please try to be seen earlier. The office should understand. No matter how much our men want to believe it's all wrong and not happening, you won't know until you know!! I don't know if your husband is in denial like Kevin was. It's hard for them, but I wish I had pushed way harder than I did.
I even cornered his Dr (gp)when she told him he could go back to work in Alaska for 3 weeks. We were alone and I told her she was making a huge mistake. I said if you check symptoms of oral cancer, he has ALL of them. I know she was afraid because she just froze and had an o crap look on her face. After the diagnosis and starting chemo I had to take my mom in to see her. She hugged me, cried and apologized. I asked her to please be more diligent with the next person that might come along. She said she would. It was because Kevin didn't smoke or drink so she just didn't think it could be cancer. I explained the HPV thing and a lightbulb came on. Hopefully next time she will be on it.
Part of our deal in the caregiving is to push when we need to. It's hard, believe me I know.
Keep in touch. We're here for you.
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
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