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Joined: Jan 2015
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Hey Jane, sorry you have to be here but you have found a great place to help you through this.

To echo Cheryl, I hope you are being seen at a CCC (Comprehensive Cancer Center). I notice you didn't mention seeing a radiation oncologist. If you are being followed at a CCC, your case ought to be discussed at a tumor board by a variety of doctors in many disciplines, including radiation oncology. I would ask about this and also ask why nobody has recommended that you see a RO (radiation oncologist)

As many have said on this site, having your case presented at a CCC tumor board is very important. Second opinions are also extremely important. If you haven't received a second opinion from another ENT, please do so. If your ENT wasn't at a CCC, please go to one at a CCC.

I have been fortunate enough to be seen at a CCC, have my case presented to tumor boards and received second opinions. In my case, base of tongue (BOT) cancer, it was recommended not to do surgery and to do chemo and radiation instead. Perhaps a CCC tumor board will recommend something other than surgery for you too. Or they may concur with surgery, but in any case, it's best to get that opinion. Best wishes and good luck to you.


Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
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I am going to a CCC and seeing a highly recommended Oncologist who only deals with oral cancers. They do have a tumor board that meets weekly with over 40 specialist. So far I have appointments to see a Dentist, an ENT, and a speech pathologist. Over the next week and a half. I have had an endoscope and CT scan. This week I go back for a PET.
My initial appointment was only a week ago today... I have written down questions and will include your suggestions. Thanks Cheryl and Andrew!


Biopsy 4/14/2015
SCC stage 1 Right side of tongue
Full Body PET all clear except for above
Partial glossecetomy and rt tonsilectomy 6/2
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YAY~!!! best of luck to you... it won't be easy but you can do it.
hugs


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 2014
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Just wanted to say welcome, also, and so very glad you found this place-everyone here is so supportive and wonderful! I still feel kinda new to this but the the support and knowledge I have gotten here has been a gift! I wish you only the best!


Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

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Good news!?!?! The Pet scan did not show any additional involvement. Surgery is scheduled for 6/2 to remove tumor. Based on how deep they have to go to get clear margins we have scheduled a neck dissection for 7/15. If needed.
I have decided to take off from work starting now to focus on me and getting strong (mentally and physically) before surgery! Hoping for the best but preparing for the worst...


Biopsy 4/14/2015
SCC stage 1 Right side of tongue
Full Body PET all clear except for above
Partial glossecetomy and rt tonsilectomy 6/2
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It sounds like you are in good hands. At this point, you may want to go and gorge on your favorite food. It may be some time before you can eat whatever you like in whatever quantity you like. It is also a good idea to put on a few pounds in preparation for treatment.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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"OCF Canuck"
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Um... why wait for the neck dissection? They are in there doing the surgery. Why not do both. My questioning of this is two fold. Firstly, this cancer has a tendency to hide in the nodes and be undetectable on a scan until it becomes a certain size. By then it's had an opportunity to spread even further. Secondly, that's two surgeries, and being put out twice? Two recoveries.

By doing both they are ensuring no further spread and making it possible for you to not have to have rads and chemo. If they remove the nodes and tumor and you are clear then there is a good chance that is the end of it.

If they leave the nodes and one or two pop up post surgery, then you will in all likelihood be having rads and chemo.



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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Hi Cheryl,

They explained it as, depending on how deep the tumor is ( to where they can get clear margins,) will depend on if I will have neck dissection. Everyone is hoping since I have caught it very early, I will not need. My surgeon always schedules the dissection to follow in these types of cases. I believe it is because he will use the or with the DiVinci robotic knife for tumor and a different or for neck dissection.


Biopsy 4/14/2015
SCC stage 1 Right side of tongue
Full Body PET all clear except for above
Partial glossecetomy and rt tonsilectomy 6/2
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Hmmmm.... well he's the dr. But I can tell you my guy - right out of the gate said that I was having a dissection. Even though a CT and MRI showed clear, he knew there was a good chance the cancer was already there on a microscopic level. I didn't argue and was glad for this. Turns out I had a node that did no show up on any scan, and it was cancerous. What's more - the cancer had broken through the node and into the surrounding tissue. Had he not done the dissection at the same time - I'm fairly certain I wouldn't be here today.

hugs and 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
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Hi, I had my surgery 6/2 and feel I have been recovering well until last night. I have been backing off the pain meds during the day and taking them at night as needed. Woke up last night with terrible pain but it felt like it was more my ear! Is this deferred pain?


Biopsy 4/14/2015
SCC stage 1 Right side of tongue
Full Body PET all clear except for above
Partial glossecetomy and rt tonsilectomy 6/2
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