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Joined: Sep 2003
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Well even Doc's looking at my arm ask if I'm a burns victim, and have I had a skin graft, when I tell them what I have had done they just go OH!!
So may the questions from Joe Public are no worse.
We are at least living proof that early detection and treatment means we are here to be asked questions of!!!!
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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I truly believe that people ask these questions NOT because they mean to hurt, but that they are trying to make conversation. I believe that it is a lesson in patience and an extension of God's Grace. We need to be compassionate to the idiot questions and just understand that for the most part, they don't mean to be hurtful. At least, I don't think they are. Once again, you are the one that needs to be strong. Isn't that always the case?

New motto: "Extend Grace to the those that utter stupidity Lord, because they do not know what they are saying." But maybe, they ARE trying to understand..therefore the questions.

I know that I have been uncomfortable and inserted my own foot into my mouth and cringed afterwards. We all have been stupid at some point. Hang in there.

Brenda


T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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Thank you Helen and Brenda. I agree with what you each wrote. The saleswoman who asked if I had just come from the dentist felt horrible afterwards when I told her that I am an oral cancer survivor. I told her not to feel bad cuz I am happy to be here telling my story! SMILE!
I try to live by the words of Thumper in the movie Bambi, "if you don't have anything nice to say, then don't say anything at all". But I am sure I have said things without thinking too!
Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Carol, you've made Thumper way too grammatically correct. His actual words are "If you can't say somethin' nice then don't say nothin' at all" I actually use a little section from Bambi, including that part, in my intro psych. class when I teach about child development--Bambi develops in some very human ways and my students love identifying the concepts they are learning about in a Disney movie. laugh

I do agree with you and everyone else that these things are said out of ignorance, not malice. But hey, if you can't gripe about them here to fellow sufferers, where CAN you gripe about them?

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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I've been thinking about the above for awhile now. My reaction[as a caregiver and people orientated business owner]has a little different perspective. My husband is experiencing the cancer. The missing teeth, the swelling under his neck and the ear to ear scar, the inability to talk clearly are all plainly visible to our customers. John handles this by telling them outright that he has had cancer surgery. My job, as a designer of safe and functional kitchens and bathrooms,is to ask about any impairments or disabilities that should be considered in the design. And I have been trained to observe people carefully when starting to work with them. If I see a possible physical limitation, then I try to ask about it in a non offensive way. It has amazed and pleased many of our clients when I noticed and asked outright about a physical impairment that needed to be addressed.[I also do this with age related designs]So I guess, my feeling about this is "consider the source and the source's intent". Most of us are wellmeaning-even if ignorant.Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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if you've told one you may as tell all.i told several people and in two weeks i went from having anything from colon cancer to lymphoma to brain cancer. tell the people that matter and as for the rough questions remember the people that really love you care about that stuff, and the people that are just aquaintances, just let it roll off your back. you've got much more important things to concernyourself with now. mo

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I was berated by my sister when I related some conversations at a BBQ I went to, during radio...my friend asked me had I been in the sun, "you've got a great suntan". My answer? "Oh, that's from the radiation treatment". Didn't bother me, but I did feel a bit guilty responding in such a fashion, a real conversation "changer"! I don't really mind the funny looks I get from my scars, I'm just grateful that they're not too bad, compared to some other peoples. And I'm still here to annoy everyone! wink

Cheers!

Tizz


End of Radiation - the "Ides of March" 2004 :-)
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Hi --

We took a different tack -- we told all of our family, friends and relatives as well as our close neighbors - we felt it would be all too obvious when we had to cancel our Australian birding trip (which everyone knew about) that something was seriously wrong. Also, Barry would be "missing in action" at meetings of clubs in which he was active, not out bird-watching, etc. Plus during treatment he would be (we anticipated) pretty sick. Also, I thought we could use the support.

This we got in spades -- the den and house are filled with cards and notes from everyone, some lovely letters, flowers, plants, one friend gave us Blockbuster On Line as she thought he'd want to sit and veg with DVDs -- emails from all over the world (we have a large world-birding community), calls from relatives etc. It even got Barry's two brothers in England together (they had been at odds over some trivialty). The hardest decision was to tell his 98-year-old mum but she was already very suspicious when we didn't go to Oz. She took it very well and calmly, so it was the right decision.

Now that Barry is out again birding and going to other events, everyone tells him he looks great (he does though he's lost quite a bit of weight) which makes him feel more positive. If we hadn't told them , they would be asking questions like -- what happened to YOU?

Since we told everyone up front (and they told others), we do not get any of those questions and that is a good thing.

However everyone has to decide what they feel most comfortable with...

Best,
Gail and Barry


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Gail and Barry, there is a woodpecker in Arkansas I'll bet you have not seen- Come on down laugh Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Jenn,

Everyone handles their situation in a way that they are most comfortable. Unfortunately, some people lack the common sense to not ask inappropriate questions. My personal approach is to tell anyone I can about my experience with oral cancer. Amazingly, I have not had anyone ask me a will or anything like that. Most ask me if I smoke or drink as they seem to know that these are major risk factors. When I tell them that I haven't smoked in 42 years and drink very rarely, I take the opportunity to tell them, "If it can happen to me, it can happen to you".

It's interesting that Glenn mentioned an "Oral Cancer Awareness" project as this is what I decided to do. I am of course, in a unique situation, being a dentist.

All of us in our office, from my receptionists to my chairside assistants, hygienists and partners have been using my experience with tongue cancer as a means of promoting "Early Detection" to our patients and community. We perform a comprehensive oral cancer screening exam on all patients every 6 months and encourage them to have a ViziLite exam, too. I had an article written about me in our local newspaper and have done an interview with the American Dental Association. I am hoping that they will use this interview and start up a new push for the importance of "Early Detection".

It's great that you are working on your shyness as the more people you tell, the more people there will be demanding a good cancer screening from their dentists. This is certainly something that needs to be done as I read about more and nore people that had their cancers missed in the dental office.

Good luck and be strong.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 15 year survivor.

"Whatever doesn't kill me, makes me stronger"
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