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I've been wondering about all the newspaper stories on MD and his "throat cancer" when he had a tumor at the base of his tongue. Then I noticed this blurb on the Mayo Clinic website
[quote]When cancer forms in the front two-thirds of the tongue, it is classified as a type of oral cavity cancer called oral tongue cancer. Cancer that develops in the remaining third of the tongue is called tongue base cancer and is considered a form of throat (oropharyngeal) cancer.[/quote] Of course the website itself is labelled tongue cancer Mayo clinic tongue cancer
It came up again reading the tabloids in the supermarket checkout about how MD went from 170 to 136 pounds during TX but has put 20 pounds back on but his wife is very worried about a possible recurrence.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I have been talking to doctors (who want to simplify things for patients for years, and not use big words around us assuming we are a bunch of idiots) to quit calling something throat cancer. It certainly isn't a medical term as cancers are either defined/named by the cells they impact or the actual anatomical site itself. Is throat cancer esophageal cancer? That one almost works for me, but why not just call it what it is? Throat cancer (that tube that runs down from your mouth towards your stomach, certainly isn't oropharyngeal cancer, since that is above the pharynx proper. I've heard thyroid cancer called throat cancer, (an endocrine system cancer and definitely not in your throat but in your neck) and laryngeal cancer called throat cancer, and its in your neck and in completely different piece of plumbing that goes to your lungs.... So LISTEN UP Media and Doctor world!!! There is no such thing as throat cancer.

Think this is a small thing? What if someone has a base of tongue, tonsillar or whatever cancer and their docs tell them it is throat cancer. What are they going to do when they go home? Google it..... and they will not find us or good reliable information that can help them. Mayo is perpetuating this nonsense in a site designed for the public. They would never say that at a cancer conference.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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my tumor was half in post 3rd of tongue and half in anterior of tongue, they removed whole right half of my tongue, and they still called it oral cancer. I don't know where they get base of tongue as throat, probably cuz if you look at anatomy books and such, it shows the base of your tongue back by the opening of ur "throat" which some classify starting at your larynx, but it's all a big confusion to me. I didn't like so much that they classified it as throat, but to each their own I guess.

There's a lot about MD's story that just doesn't add up to me. Like how he says from what he knows of this cancer, he has it beat, even though he only went through what? 6 months of treatment?? Unless it's caused by HPV which is what I am thinking, there's no way he should be saying that. To me, that makes it look like oral cancer is a walk in the park, when it's far from it. When i heard him say that, i yelled at the tv, lol. Maybe he was just trying to be "positive" but i just think we aren't hearing the whole truth behind his story because he is a celeb!

Just my opinion. He's a great guy and good actor, but things just don't add up!


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
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Brian

Good thing I'm not a conspiracy believer or else I would wonder why the National Cancer Institute also has a page on its web site about "Throat Cancer" which basically throws in the entire kitchen sink of oral cancers.
[quote]Definition of throat cancer: Cancer that forms in tissues of the pharynx (the hollow tube inside the neck that starts behind the nose and ends at the top of the windpipe and esophagus). Throat cancer includes cancer of the nasopharynx (the upper part of the throat behind the nose), the oropharynx (the middle part of the pharynx), and the hypopharynx (the bottom part of the pharynx). Cancer of the larynx (voice box) may also be included as a type of throat cancer. Most throat cancers are squamous cell carcinomas (cancer that begins in thin, flat cells that look like fish scales). Also called pharyngeal cancer.[/quote]
NCI Throat Cancer
Maybe time to update OCF's Metatags to include "throat cancer" but you can have your message and web page explaining the facts in your post.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Aug 2010
Posts: 72
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[quote=Charm2017]Good thing I'm not a conspiracy believer or else I would wonder why the National Cancer Institute also has a page on its web site about "Throat Cancer" which basically throws in the entire kitchen sink of oral cancers.
[/quote]

I clicked on the link and it lead to this
[quote]Cancers of the head and neck are further identified by the area in which they begin:

Oral cavity. The oral cavity includes the lips, the front two-thirds of the tongue, the gingiva (gums), the buccal mucosa (lining inside the cheeks and lips), the floor (bottom) of the mouth under the tongue, the hard palate (bony top of the mouth), and the small area behind the wisdom teeth.[/quote]
This would indicate that BOT cancer is NOT oral cancer. Time to change the name of this site to the Head and Neck Cancer Foundation. On second thought, please, don't then I'd have to change my links. smile

BTW, the People Magazine cover article on MD said his cancer was HPV positive.


Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
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And of course in someone's ultimate wisdom, brain cancer is not a head and neck cancer..... It's in a category of its own. As to BOT, well, we could be the oral and oropharyngeal cancer foundation.

I wanted to deal with what composed the vast majority of ALL head and neck cancers. 85% of all head and neck cancers are directly in the oral cavity or in an area that you can see from the oral cavity the oropharynx. I wanted to represent something that after going through treatment I found no voice for. There was a laryngeal cancer society/foundation and one for thyroid, the other two significant but still small % head and neck cancers. So I just tried to fill a vacuum.

And before this goes off into the cancers are defined by the organ or cell type they involve which is almost universally true, the oropharynx is not a "thing" but a "place/space" defined by other structures or things that surround it.

Also please note that the NCI and other NIH entities all maintain portions of their web sites that are devoted to the information for "public consumption." In that light, in those areas they speak in verbiage and a "voice" calculated to be understood by the lowest common denominator.

They should realize that those of us that have deadly diseases desire not pablum and simplifications, but hard science stated in a clear manner that we can make informed decisions from.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: May 2010
Posts: 638
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happy to be part the oral cancer forum even though the doctors descibe our cancer as oropharyngeal, my Mum calls it throat and Alex and I call it all the names we can think of grin


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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