HPV+ 'Shame'. Do you disclose your HPV status?

annie4145

Apparently, I am more

Apparently, I am more embarassed that most people on this forum.  I have HPV related anal cancer, and never disclose it voluntarily, although I would if directly asked. 

CivilMatt

Strawberry54 said:

HPV+ Yes, yes, yes!

I was up front about the HPV+ cancer because I want people to know that this is an increasingly common cancer in my age group (60’s).  I am not embarrassed, but I am honest and my generation was all about ”free sex”and folks, sex isn’t free.  Nothing is.  I am typical for my age group, two or three sex partners, all in a committed relationship.  This is typical of base of tongue cancer that is HPV+.  I cringe to think what the “hook-up” generation faces. I want to see parents vaccinate their children, both boys and girls against HPV.  I want the ads for the vaccines to start including this particular cancer.  

If something good can come from me being an advocate, I am right there to speak up and do what I can to educate and help people to keep from getting this cancer.  Plus, why wouldn’t you want to share that this is so much more curable when it is HPV+?

My dentist was amazed at what she had to do to actually see the cancer.  Using a tongue depressor during oral cancer checks can help the dentist do a more thorough screen.  Even so, the initial tumor looks like a pimple and is easily missed.

Matt's end-of-the-year 2 cents

Strawberry54,

I see that this was posted around the time of the Great CSN  forum “melt-down of 2018” and that might be why I missed this one.

You said  “My dentist was amazed at what she had to do to actually see the cancer.  Using a tongue depressor during oral cancer checks can help the dentist do a more thorough screen.  Even so, the initial tumor looks like a pimple and is easily missed. “

During the growing phase (we will call it) the HPV may not be visible to any visual detection by anyone.  That is one of the sneaky aspects of the HPV, it formS below the top layer of skin and may not cause an ulcer or a pimple, maybe for years, many years.  And by the time it does break the surface it maybe cancer. it is similar to the same virus which can cause cervical cancer in women, which the doctors will exam for using a pap smear and scrap the surface looking for infected cells. If you could scrap your throat or tongue to detect the HPV you might have something there. The take away from this is it may not be visually detectable by even trained medical person during the first years of the HPV’s initial growing and developing phase.

Most people will not perform oral sex on someone sporting an active HPV ulcer or pimple as was mentioned.

Matt

D Lewis

Yes, I educate people.

One of the saddest folks I educated was a recently divorced woman going through treatment for an HPV16+ Oropharyngeal (tonsil) squamous cell carcinoma.  Mine was base of tongue.  She said; "My ex husband must have been having an affair and I didn't even know it."  She had no idea about the virus being able to go dormant in her body for decades.  She was terrified of infecting somebody else, with her supposedly active case of HPV. She was getting no guidance at all from her PCP. 

I am surprised about how many medical professionals don't know about this. I am usually asked about my cancer by the nurses and doctors I see, and I always bring it up.  

ratface

We haven't done anything wrong

If you have done any type of searching on this Board no doubt you have run across posts by "longtermsurvivor". For those that did not know him he was an OGYN medical doctor on his third fight with this cancer. We became good virtual friends quickly. While struggling with the question on how to return to a normal sex life and the HPV issue I asked him for some guideance. He related a story about a patient who had been a roman catholic Nun who had contracted HPV cervical related disease. I insisted that she must have had some sexual exposure and he assured me that she was adament that it never occured. I asked him if he believed her and he emphatically said he did. Of course we will never know the origin of her disease but it begs the question for me if  HPV is really an STI. Yes it can be but it is also transmitted by a simple kiss as already mentioned by another poster. So in fact it is a sort of hybrid STI transmitted rather easily. Lets assume for a moment the Nun was telling the truth. What level of shame did she endure? I agree that as a community we know more about HPV than the general population and should share our knowledge when appropriate. We should advocate vaccination of children and be responsible sex partners and further educate anyone who is interested. At the end of the day none of us intentionally set out to contract or expose anyone to this disease and we have nothing to feel shame about. 

For those interested,women can easily be tested for HPV during a routine pap smear, just ask that it be included in the testing. For men it gets a bit more difficult but it is possible, the penis has to be scraped for a viable sample to be taken and I don't know of any practitioner that would do it. I imagine better testing is not to far off and we have been at the forefront of the learning curve. We are guilty of nothing but our own place in the line of evolution and need to lead in education which is still severly lacking.

litebeam

swopoe said:

My husband’s tongue cancer

My husband’s tongue cancer was HPV-. But we do have three children, including a 13 year old and an almost 12 year old. Because of all of what I have learned from this board and all of you, they are getting the HPV vaccines. There is no shame in a HPV diagnosis or in the vaccinations. I wish more people understood that.

HPV base of tongue cancer

I so my husband has had the tumor at base of tongue removed robotically and 4 lymph nodes removed from the left side of his neck , cancer has got into the capillariies so he is having chemo radiation.  Now should I go to a doctor and be tested?   I am 70 and he 71 can anything be done if I also have it?  We have daughters 44 who have been told when they had exams that they don't have this we have no grandchildren.

Today for the 5th round of chemo, my husband couldn't have it as his level of  enzymes in his liver where to high , I am very worried 

cyfont

HPV+

I also share with others about my cancer being HPV+ if I am asked how I got it. I am not embarrassed or ashamed. I use this as an opportunity to educate and encourage young people to get the vaccine.

Breacher

No Shame

Thank you for posting this important topic.

 Like so many others here I contracted HPV in my 20’s (now 55) when few people knew about the virus.  I have zero shame about it.  I'm lucky this is how I got cancer making it highly curable.  I had cancer April 2018.  Cancer free Oct 2018.  Still working through how to manage limited taste, saliva, and so much fatigue.

 I tell anyone who asks that I had HPV that mutated into cancer.  I make a point of sharing (when appropriate) with anyone who has kids under 20 to make sure they get vaccinated.  Share the facts, please. Ignorance of HPV will lead to others getting cancer, possibly dying, feeling shame, having a spouse wonder if they were cheated on, etc.  

Anyone who judges you is not your friend. 

If they are not your friend their opinion is of no concern

 

Logan51

Where's the ACS campaign?

Like Motorcycleguy, I was NPC, but in the 5% unknown as for how I acquired C. As more and more came forward with HPV, and then the prediction that by this year 50% of the H&N would be caused by HPV...So where is the ACS, etc., publicly advising against the cause of HPV? They were so vocal about cigarettes for Lung, which is deadlier, but we all know the harshness of H&N tx, lasting side-effects, and the high cost of tx. When I first went to the Chemo Dr., she asked 2 questions: 1) do you smoke; and 2) are you involved in agriculture? That's it. Course, that was Jan. of 2009. Still, those of you with a HPV cause should not be the ones having to educate people- it should be common knowledge for everyone to know.

Charmit

No shame if I can help someone else

My cancer was HPV+ started in the base of my left tonsil. And I'm not ashamed at all, if I can educate individuals so they won't have to endure the treatment that comes with this form of cancer I will forever tell my story. Will be two years this June since my last treatment, and I feel great, scared daily but I'm doing good and blessed to be here. 

sunshine_64

completely agree with oknative

Absolutely important to spread the word. The vaccines are crucially important in this struggle.

Drivingdaisy

HPV

I tell everyone who asks.  I usually get Oh did you have breast, no Throat HPV 16+.  Education regarding this is so important for young & older.  Since you can carry this around in your body I was told for 20-30 yrs people need to understand you can pick it up in College & yrs later bam it rears it's ugly head.  Never had bad Paps so when I got the news it really threw Me.  I had had the tiny patch in My throat for 3 yrs before DX, travelEd Europe, drank wine & I (bad girl) smoked so figured that caused it.  ENT said didn't help but didn't cause it.  But I actually went to the ENT for allergies not the patch.  Asked every Dr or Dentist I saw what was it since it didn't bother Me or change in the 3 yrs.  I felt great, just allergies, so finally saw ENT to help with the allergies.  He was educated in HPV, was concerned took a biopsy came back Cancer.  Than another biopsy to check it for HPV.  His cutting was the first time the patch changed & I developed a tiny pimple like bump which he removed, had tested.  HPV induced Cancer.  Talk about stunned.  So not embarrassed but do try to educate since I never had a tumor, lymph involvement nothing till he started cutting into it.  Wish he would have just cut the whole thing out & been done, maybe some light Chemo.  But he said had to be done robotically so all my teeth had to go to reach it.  Why I also preach always 2-3 opinions and go to big Center educated in your form of Cancer.  So important to avoid being overdosed for a small Cancer, Stage 1-2?  They thought my lungs had been involved but was watched by lung Dr yrs ago for 3 yrs & DX scar tissue from past lung infections.  So be very diligent & research & find the best.  Too many important organs in throat to mess with with present treatment, the barbaric one which I got locally.  Messed Me up for the rest of My life and can't change permanently damage.  No saliva, Thyroid shot, eyes, ears & nose effected along with low sodium & blood levels &  so many stomach issues.  So disappointed.  I fought hard, did what I was told & now can't do much do anything.  Educate people please.  I hate for others to end up like Me.  It's so sad.  I was full of life & energy to being a shell of my former self & so skinny so don't even look like Me anymore.