I have just started to tell folks of my illness. Until now I had just told a close circle of friends and family that I knew would be supportive. My question is how have others coped with inappropriate comments - such as, do you have a will? what will you do when your hair falls out? will they remove the rest of your tongue?.....and on and on. Part of the reason I waited so long to tell outsiders is that I am, by nature a very private person. I don't like people feeling sorry for me and I don't like people asking personal questions. Advice anyone?

Jenn, I have been where you are, got the looks and the questions, and decided to use the question and answer period as a teaching opportunity. That sounds harder than it is. You have a story to tell, go ahead and tell it. If you save just ONE person from having to go through the cancer and its after effects, it's sure worth it.
I also pointed the ones I thought were truly interested (and not just making lip noises) to the OCF site for more info. I have seen five of them on the site already, so maybe it's done some good.

Andrea

Unless you are embarking on some kind of Oral Cancer awareness project, why bother with them? Tell who you need to tell and that's it. Just so you know, those are not all off the wall questions, it is just what pops into peoples minds. Depending on your assessment, or their assessment of the relationship, a question can be appropriate or inappropriate. I have had the will question thrown at me and I know it is out of concern for my teenage daughter. After the initail shock, I get it. Inappropriate, no. A bit of a shock, yes.

Glenn

I am also a very private person, and I made the decision not to discuss my illness or treatment with everyone. Because of my appearance and speech, I am sure that rumors were flying, but most people were discreet. I have discovered that people will take their cues from you. It is now two years since my surgery, and I find myself more comfortable sharing my story. bottom line- do what feels right to you. You are just as important as anyone else, and deserve to do what feels good to you. take care-you will be able to cope. Fivepets

I agree people will take their cue from you. I told everyone at work but told almost all of them indirectly, I told my three closest friends and colleagues there and let them--with my clear permission- spread the word to everyone else. I am more comfortable with people knowing, though I wasn't all that confortable doing the telling at first (I've gotten a lot more confortable over time because now I have war stories I can tell).

Problem is when people don't know, you can also get awkward questions, most of which have to be answered by telling them on the spot even when it's not a good time.

"were you in an accident? that looks like a nasty scar"
"why can't you eat (fill in the blank),are you on a diet?"

OR (at least I get this because I was 50 pds overweight when I was diagnosed and have lost over 65 pds since then)) "Wow, you look great, you've lost so much weight. How did you do it?"
(I confess that there's one guy at my workplace who has always been a bit of a woman-ogler who said this to me and I was very tempted to say "cancer" and just walk away and let him sputter but I just said "it's not a good story")

Nelie

I still get some stares and questions. I think it is oh so rude for a stranger to ask "did you just come from the dentist?". I have remained within my circle of family and friends. I also retired on disability, due to the type of job I had prior to cancer. I am 3 years out from surgery and radiation and speech is okay,mouth is very, very dry and sometimes I truly dread going out to run errands, especially if I must speak. I know that is horrible and I should just get over it by now, some days are better than others. One day at a time.....Carol

The one question that really irks me and that I cann0ot see as appropriate in any circumstance is one I have actually gotten three times--al from nurses, surgical intake interviewers, and other (non-doctor) medical people:

"you have/had tongue cancer? How'd you get THAT?"

I don't think these same people would ever ask a breast cancer patient this--it must have something to do with the rarity of the disease but still--if they thought for one minute before opening their mouths.....

I think I generaly went with the "need to know" principle -- I tried to be sure that my closest colleagues and clients were armed with enough facts from me so that they weren't engaging in idle (and uninformed) speculation. I also got some of the same eye-popping questions that Nelie mentioned -- in fact, once in a while I still get them from health care workers who may be looking at my medical history for the first time, but I guess I've developed a rather thick skin about them over the years.

Andrea makes a good point that some of the people who ask these questions could benefit from finding out more about this disease (which they could do by perusing this site). It just might help someone else get diagnosed a little sooner.

Cathy

Jen,
When people ask you questions like that, just remind yourself to look at the source...then chalk it up to ignorance. Stay positive. Barbara

Oh my gosh Nelie, I have had the same comment thrown at me and by a nurse. She had NEVER heard of tongue cancer, etc. Also, another one I hear a lot, are you a smoker, or did you smoke? Okay, is that supposed to make me feel worse or better or what....I don't know....but like Barbara said, chalk it up to ignorance. Sorry, didn't mean to rant, thanks for listening folks. Carol

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

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

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

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.

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

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

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

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!

Cheers!

Tizz

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

Gail and Barry, there is a woodpecker in Arkansas I'll bet you have not seen- Come on down Amy

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,

I hope your efforts in the dental community can bring some results. I continue to be amazed (and discouraged) to hear about recent instances where a dental professional completely missed some obvious warning signs.

Within the past two weeks, I attended two charity fundraisers (for two completely unrelated organizations) and at both of them I happened to be seated next to people that I discovered were oral cancer survivors. One of them was diagnosed and treated within the past year, but the discovery of the cancer was delayed due to her dentist's inability to figure out the significance of her symptoms. It was only after she moved on to an oral surgeon that she got the biopsy she needed.

Cathy

I also heard a lot of innapropriate questions/comments from coworkers and friends. (I work with doctors and some of these comments were from them.) People are ignorant. Try to ignore them.

Jerry, I am so happy to read your post. I only wish more dentists and office assistants would do the same. My dentist and an oral surgeon missed cancer on my tongue (and it looked pretty bad). Finally, I was referred to my current oral surgeon and he took one look and knew what I had.
My son attends a college in NC, he told me that most of the guys on his LAX team "dip". Same with my daughter, she attends college in TN, she said most guys, even some girls walk around "packing a lip". They both told me about a commercial on TV with a young man who "dipped" from a young age and got oral cancer and is now very deformed from surgeries, and visits colleges to talk about it. God Bless this brave young man. Thank you Jerry for your efforts! I wish more were like you! Carol

p.s. I did not mean to pick on schools in NC and TN, a LOT of high school kids here in Baltimore also dip, it is becoming more and more the thing to do. It scares me so much!

Cathy and Carol,

Thanks for your positive comments. I am amazed at how many of my patients "pack" tobacco. I guess, they think that it's somehow not as bad as inhaling smoke. This mind set unfortunately continues to exist.

One of the first oral cancers picked up in my office has to be over 25 years ago and it was from smokeless tobacco. Unlike other areas of the mouth where cancer can develop, these areas are very visible. The tissue changes are usually very large areas that are corrugated looking.
I guess all I can do is to keep on looking and preaching about somkeless tobacco.

Jerry

Jenn,

Sometimes people just ask questions because they are out of their comfort zone and trying to extend their hand of friendship to remind you they are there. In the process they are making attempts at small talk to try to see where the conversation may steer itself. The problem is, like two rudderless ships, the conversation can't be steered anywhere. Find yourself a brief response that says, in your very own way, what you want them to know. Unfotunately, I would most likely answer with humor, that is just my nature.

For example, do you have a will? Why, yes, I have been told often I have a very strong will.

What will you do when your hair falls out? I would most likely file away my comb and brush and buy more wash cloths to make sure my bald head doesn't get jealous form lack of attention.

What will you do if they take out the rest of your tongue? I would have to move to a larger house because of all the extra friends. HUH? The only thing that has kept me from having a million friends has been my tongue so without it, I should be able to keep more and keep them longer.

OK, so they aren't the best. If you don't want to answer, just look at them with a blank look on your face and they won't ask any more questions. Tell them you don't really feel like talking about that right now but you would like to know... That helps them know what you want to talk about, at least.

Ed (aka Mr Useless answers)