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Joined: Sep 2012
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"OCF Canuck"
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"OCF Canuck"
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Hi Gina,

Based on what you have said, it is not base of tongue (you can't actually see the BOT as it's in your throat). I had a similar diagnosis and similar age (I'm 39).

You will likely have surgery to remove the tumour, and surrounding tissue and based on the size, potentially a reconstruction of the lost part of the tongue (called a glossectomy) from another area of your body. For me, it was from my forearm.

Radiation and chemo will be determined in consult with an oncologist. Oral cancer has high recurrence risks, and if it has spead to any of your nodes, is almost a guarantee.

This is not a death sentence. It is cancer, it is scary, but it is beatable.

Good luck with your tests and keep us posted.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Dec 2012
Posts: 15
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Posts: 15
Hi Gina!

Like the others, I'm sorry you had to find this site. I'm fairly new here too, but definitely appreciate the information I've received from everyone here! You have already received some GREAT information in the previous posts.

My advice is to take what you KNOW so far and work with that. Try not to worry about what may or may NOT happen. Yes, it is good to think about possible actions that may need to be taken, but try not to worry about it. Write down questions you have so you don't forget them. Take someone with you to your appointments. They often think of things you don't and remember more than you do.

I was diagnosed with tongue cancer when I was 36. Mine was also at the back of the tongue, but not considered BOT. It was right next to the molars. I was diagnosed on 8/21/08 and got an appt with the ENT surgeon right that afternoon. He ordered labs, PET, and set up appointments with MO and RO. After a frantic week of appointments (my sister flew in to go to all of my appointments with me), I had surgery on 9/1/08 to remove the cancer and lymph nodes on right side of neck. Thankfully, no nodes were involved, margins were clear (3.5 cm tumor) and I didn't need further treatment. I know many others are not as fortunate.

I was out of work for about 5 weeks, went part-time for a week, then back to full time. I did have trouble speaking for a while. (Well, I didn't have trouble speaking; people just had trouble understanding me. :-) ) I saw speech therapist for just a few weeks which helped tremendously! Now only I can tell that there's a difference in my speech, its so minor.

I'll be thinking about you tomorrow at your ENT appointment. Good luck! You CAN do this!

:-)
Teresa


DX 8/21/08--SCC right side of tongue; Age 36,non-smoker,casual drinker
SX 9/01/08 to remove cancer & right modified neck dissection--margins good, lymph nodes clear(T2N0M0); no further treatment.
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Sorry to hear about your recent diagnosis Gina. I also live in the SF Bay Area and was diagnosed young. This is a great forum - let me know if I can help... Been there, done that excluding chemo.
Keep us posted.


Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
Joined: Jan 2012
Posts: 112
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Posts: 112
Hi Gina, how are you? Hope you are able to do well with all this crazy news. Its not easy to have the news about tongue cancer when you are young. I know the feeling...

Its been one year and one month feom my surgery and diagnosis.

I live in Brazil - and glad to know you are from San Francisco. I'm visiting the city in march and I also work with start-ups and digotal marketing business.

Hope you have a nice progress on your treatment, and any doubt about surgery feel free to ask. smile


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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Hi Lola! So glad to hear your suscessfull case! smile


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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Posts: 27
All,

Thanks so much for reading my post and sharing your stories. I feel very inspired to hear about similar situations, and feel like there is a light at the end of the tunnel! I am very nervous about the surgery. The hemi-glossectomy and partial neck dissection is scheduled for Wed, 1/23.

I don't still have the full diagnosis as I only got my PET scan done this last Sat. morning, so I hope to hear more tomorrow. I did have an MRI and met with an oral surgeon. He does not think it has spread, but that it is stage 2 based on the size of the tongue tumor (2.8 cm). So, I guess I am T2N0M0, as far as I know. I would like to get the confirmation from the doc before I build my auto-sig. :-) They think it was caused by HPV but still not sure. I am a former smoker, I quit 9 days ago cold turkey and haven't looked back since.

My surgeon thinks they will need to remove 1/3 of my tongue. They are not sure if they will need to fill it up with a skin graft - he said they will assess it first and then see how big the hole is. He gave me the option to do a skin graft from my thigh, or have skin cells from a cadaver used. Has anyone every heard of this? I voted for the cadaver as he said the results would be the same, and I wouldn't have another wound or scar to deal with. I don't care about scarring, but one less wound would be nice. As long as the results are the same, I don't feel squeamish about the cadaver.

I'm still not sure about the neck dissection. I wrote down a note about drainage bags but I was pretty much in shock when I was taking notes, so I don't know. I just pray it hasn't spread. I supposed the PET scan will be the final test to gauge that. I also hope that getting the first results from the biopsy on 12/31 with surgery scheduled for 1/23 is soon enough. I want it done with this surgeon, he is supposed to be one of the top two in Kaiser in the bay area. So, I did wait another week and he said it should not be a problem.

I will post more once I have the final results...probably in a different topic forum I presume?

I did speak with my employer and will be on short term disability with 60% pay - we are planning 6 weeks for now but I hope to go back sooner. They have been very gracious and i know my job will still be there when I'm better. It was very nice of them considering I've only been there 6 months...some like my boss are even donating some of their unused PTO to minimize the financial impact.

I just pray, pray, pray that I don't need radiation and chemo. But, if I do, I know I will have support here to help me through that scary time.

Thanks again to everyone who responded...I don't feel alone!
Gina


Female, age 35
SCC Stage IV, left oral tongue, 2.8 cm
T2N2bM0, HPV+, Former Smoker
Dx 12/31/12
1/23/13: Hemiglossectomy (1/3 of tongue) & SND
Cancer found in 4 lymph nodes, 1 with ECE post surgery
1 tx Cisplatin, 30x iMRT (6 wks)
TX ended 4/15/13
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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"OCF Canuck"
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Hi based on location - oral tongue - chances are your HPV negative. You will have drains but the neck dissection normally isn't too painful as the nerves are damaged post op so you'll be more numb than anything. The drains should be removed a few days post op.

You might look like you've gone a few round and be uncomfortable but pain isn't too bad. You will likely need physio post op for your shoulder but other than that recovery is surprisingly quick. Best of 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
Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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The donated skin is called Alloderm. I had it placed over my carotid artery after a RND whereby the neck muscle protecting it was removed. Major hospitals keep a bank of Alloderm for this, and other uses.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Sep 2012
Posts: 381
"OCF Canuck"
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"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 381
Gina, sounds much like me. I was not given the option of a cadaver, they took from my forearm to rebuild my tongue.

I think the risk of a cadaver would be that it is foreign, and your might reject it (that's how it works with organ donation - I'm a kidney donor to my dad). With your own tissue there is no risk of that, so it is something you may want to explore further with the surgeon.

You will likely have 4 drains from your neck, which is simply to aid in draining a buid-up of fluid in your neck. They tend to take them out one at a time, when the levels in each drain drop. I didn't feel a thing when they removed them, so no worries there.

Good luck and keep us posted.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,267
Likes: 1
Good question, and here is some info from Alloderm:

"Donated human skin tissue supplied by US AATB-compliant tissue banks is aseptically processed using LifeCell's proprietary technique to remove the epidermis and cells that can lead to tissue rejection and graft failure. The result is an intact acellular matrix of natural biological components that promotes rapid revascularization, white cell migration and cell repopulation, as shown in animal studies."

My ENT needed to use Alloderm since he did not plan on a RND, I was supposed to just have a MRND, otherwise he would have done a flap. Luckly, the neck muscle was removed, since it contained cancer. The Alloderm had to be removed in a subsequest surgery, peeled off carotid artey, to do a pec flap for a different reason other than tissue failure, which was not enough protection on the carotid artery for additional radiation.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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