I am wondering something, wondering if I am alone in this, but I have to admit that Michael Douglas coming out the way he did with the HPV connection has been unsettling for me. Since my DX and TX two years ago, I have often spoken about my cancer by relating it to what Michael Douglas had. He never went public with the HPV connection (until now), and, frankly, except for some close friends, I have not either. I am not a prude, but I have felt uncomfortable "coming out" as HPV+, as if I somehow brought this cancer on myself. I know, I know, it's silly on an intellectual level. And I tell myself all the time that millions of people walk around with the virus but few will develop cancer and that an HPV+ tumor responds better to treatment, etc. etc. Intellectually, I am good, but emotionally... I get stopped in my tracks. I struggle with it, I do. And now I feel like Michael blew my cover, sort to speak. Is it just me? Can anyone relate? Can I get a witness? LOL

I hear ya, Michelle. Not difficult for them to put two and two together. I never experienced any bad feedback, but my social life is near 0 now. Many who knew me from the gym, work, know better to be insultive to me, and know I would not not take it lightly, in my past life lol, but I'm still no Charlie Brown to be picked on. I don't care what others think, and who are they to judge, and where were they the past 3.5 years when I needed help, and basically went through treatments, testing, dr visits, biopsy, consultations by myself, not even family, and could they do the treatments we went through, without crying, I doubt it, and you have the strength to stand up for yourself. Btw, I was never tested for HPV, but it's more likely it was.

I think someone may have posted what to say to family, co-workers, friends, acquaintances, strangers, if you want to. Not all need to know everything, and info and be on a need to know basis, limited to what your comfortable with. Everyone knew at work since I was hospitalized for 6 months, many came to see me, and about 50 made a contribution to give me, and sent cards. That was three years ago, and still some are asking closer work friends how I'm doing, even yesterday. I miss work.

Many cancer patients, have guilt, they may even say they deserved it from bad actions in life, and it's karma, and activities that may have caused it like drinking, smoking, intimate relations. I guess it's like any loss, first its shock, denial, blame or guilt, and acceptance that you go through. Cancer is a life altering event.

Good topic.

Michelle, I was negative for HPV and I never smoked. I was a light social drinker, but that was it. I sometimes feel guilty that I must have done something to bring on this horrible disease. I guess my feelings about MD are that at least he is getting people to talk about it and that's not so bad. I understand your feelings, but does it really matter how you got it? Years ago, in my grandmother's generation, any cancer was considered something to hide under the rug, and obviously that has changed. I also remember some of the comments Betty Ford got when she had breast cancer. Before that, nobody really talked about breast cancer publicly. I saw my ENT this week and he reiterated what OCF has been saying for a long time. HPV is the fastest growing cause of oral cancer, particularly in younger people.

I didn't share the source of my husband's cancer ... unless someone asked directly "where could it have come from?". There I would answer truthfully, and would get one of three reactions: shock, scorn or relief (this, from my medical friends). Then I would go into the vaccine spiel. I have a LOT of sympathy for MD and his wife on this: I am not in the spotlight, and they are.

Just remember that the CDC says that almost every American that is sexually active will have and HPV infection at some point in their lives. So it's a big club. Most people who get the infection since it has no obvious signs, will never know they had it and cleared it. It is the most common sexually transferred infection there is. Anyone that gives you crap should know that they too likely belong to the HPV club, their just got cleared by an immune system that recognized it, and they compose 99% of those ever infected. 1% end up with this bad luck of the gene pool draw.

Michelle, You are not alone. You have a witness.

I also find this MD fascination unsettling. Although a good thing for oral cancer awareness, on a personal level it is uncomfortable. I feel that we are now singled out and thought of as perhaps promiscuous. I have been honest about the oral cancer/HPV+ link, depending on who asked me about causation. Actually, my husband's tumor was not tested, but it certainly fits the profile.

I guess that talking about it honestly on my own terms is different than being talked about....

I just think it is odd that it is okay for one to admit to smoking and drinking but not oral sex.

Hi Michelle,

There's a stigma attached to HPV much the same as HSV type 1 and 2. People are just funny about it. Having had HSV most of my adult life, I was surprised when they didn't find HPV initially. However, they found it with the 2nd set of biopsies and removal of the cancerous lymph nodes. I was a smoker and drinker most of my adult life as well so it was kind of a double whammy in me getting SCC H&N.

I was never so relieved to have been exposed to another STD at some point in my life It doesn't phase me in the least as 90% of the population has been exposed or has HPV or HSV 1 or 2 or a combination of two or all. I find it amusing when someone poo poos me for telling them that cold sore is herpes

[quote=Brian Hill]Just remember that the CDC says that almost every American that is sexually active will have and HPV infection at some point in their lives. So it's a big club. Most people who get the infection since it has no obvious signs, will never know they had it and cleared it. It is the most common sexually transferred infection there is. Anyone that gives you crap should know that they too likely belong to the HPV club, their just got cleared by an immune system that recognized it, and they compose 99% of those ever infected. 1% end up with this bad luck of the gene pool draw.[/quote]
And this is exactly why the whole MD thing bothers me too... There are also so many unknowns to this virus as well . Wished he would have reflected more on his recent performance... He had a great opportunity, I feel he blew it. Guess its up to the rest of us to clarify, support and educate!

MD opened the door for discussion but we all have to generate the discussion locally first, in my opinion.

The door is open now to educate, for activism, awareness before its shuts again. Maybe MD will write a book? Otherwise we may have to wait for the next celebrity, public figure, to open the door again.

Paul, your story is certainly one many would appreciate. Go tell it on a mountain, my friend.

Thanks Ed.

I think Brian should write the book.

Brian could write the book, and is most qualified to do so. I have my own story, and different path, but I probably won't share. What I post is only half the story, and a small part of my life. Actually, several people encouraged me to write a book, not on cancer, but my career working 25 years in 5 star hotels, and executive protection. I was going to call it, "Sex, Lies, and Murder."

[quote=travelottie] on a personal level it is uncomfortable.

[/quote]

That's where the difference lies. The two sides of the fence (much like PEG vs NO PEG) is a personal and emotional reaction on whether you're comfortable or not.

I don't have an issue discussing HPV, HSV, oral sex or what not. It's only fairly recent that this correlation was discovered. Twenty+ years ago we didn't know, and I will venture out on a limb and say many of us were probably wild and wooley back in the day. I know I was! ~lol~

As far as MD's interview? I do agree that it's a huge positive to bring this subject to the forefront, however, MD could have done a better job doing so. Personally I think the man is in denial. To dismiss the smoking and drinking and drug use (from what I've read, he was quite the wild man back in the day) was wrong. All that did was increase the odds of contracting H&N cancer along with HPV.

I smoked for 35 years (cigarettes/pipe/cigars) and I drank as well. Many times (ummm WAY too many times) to excess in those 35 years. It was during those years that I more than likely contracted HPV. So my lifestyle, all of it, not just sexual behavior, is responsible for my cancer.

Even if you are uncomfortable with the subject it's still a positive. The awareness this will bring as more people, celebrity or not, will come forward and discuss this subject in a more comprehensive manner and educate the public will hopefully help to prevent future cases of this disease we've all come to know so personally. Hopefully, as people start discussing this more, it will help remove the stigma of HPV. For this subject to be a "hush hush" kind of thing in this day and age is just silly. When you think that 90% of the population has had the virus and nearly all have been exposed at sometime in their lives.

"T"

If a book could be written by Brian, it needn't be a big book. . . . just a small booklet type of book just on HPV. I already have a vision of the title and cover which could have someone point an index finger at the reader and the words "HPV and You" and give all the possible ways a large percentage of the population could get it. I love the straight talk style in Brian's quote (which would look good on the back cover of the book):

[quote=Sturt1][quote=Brian Hill]Just remember that the CDC says that almost every American that is sexually active will have and HPV infection at some point in their lives. So it's a big club. Most people who get the infection since it has no obvious signs, will never know they had it and cleared it. It is the most common sexually transferred infection there is. Anyone that gives you crap should know that they too likely belong to the HPV club, their just got cleared by an immune system that recognized it, and they compose 99% of those ever infected. 1% end up with this bad luck of the gene pool draw.[/quote]

If this could be done I would buy several copies and donate them to the university library and colleges in the area and also doctors' offices. I'd be glad to volunteer my typing and/or proofreading services.

Great responses all. Thanks people, for sharing your thoughts. Each response gives me a new angle on the issue. It is good that MD can raise awareness because he is in the spotlight.