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HPV........??

eihtak
Posts: 784
Joined: Oct 2011

So, the local news station is going to be interviewing me one of these days soon on the relationship of HPV and cancer. Of course I will be mentioning my own anal cancer (though my tumor was never tested for HPV, my doc did once say to assume it was positive??) I feel fairly informed but yet a little unsure. Any advice or things you would like said about HPV, please let me know.

sephie's picture
sephie
Posts: 502
Joined: Apr 2009

hey,  this is great..... be sure to mention that HPV is transmitted also by just skin to skin contact.... you do not have to have insertion to receive it....that anal cancer is NOT mainly due to anal sex ( can be the cause  but most are not)..... that anal cancer is NOT caused soley by  HIV ...the majority  of us do not have HIV....that it anal cancer can be the result of ongoing irritation to the area such as hemmorroids or what ever....that HPV can lie dormant for years and pop up at any time with no symptoms until cancer stage....that is is missed for years by pap smears....i think it is wonderful that you have this opportunity....... thx for doing this...... anyone correct me please , if i have stated anything wrong.....sephie

eihtak
Posts: 784
Joined: Oct 2011

Thanks, I'm just a little nervous but really happy to have this opportunity. Most people know that I have had anal cancer but are probably unaware of the HPV relation. The whole thing stemmed from a lack in parents getting kids and those of age themselves getting the complete cycle of HPV vaccines. I am comfortable with my resulting colostomy but think I may leave that out, not everyone knows or needs to know that and the majority of anal cancer patients do not end up that way. Who knows, I tend to ramble when nervous so we'll see.

jcruz
Posts: 180
Joined: Jan 2013

I think it's important to note that HPV is associated with more than cervical and anal cancer.  Throat, penis, scrotum, vulva, vagina.  You've probably looked at the many web pages with information.  The one from the Centers for Disease Control is pretty easy to read and gather info from. http://www.cdc.gov/cancer/hpv/

What a good opportunity to spread the word about the value of the vaccine.

eihtak
Posts: 784
Joined: Oct 2011

Yes, I have been reading a lot, but thanks. Apparently they have already spoke to a doctor about HPV but I'm not sure what info they were given so want to be prepared. I was told they want more about my resulting cancer due to the (unavoidable at the time) lack of vaccination. So I guess the more awful I can make it sound the better. I almost wish I was in the middle of treatment instead of doing well two years out.....well not really at all, but will have to draw on those memories.

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RoseC
Posts: 485
Joined: Jun 2011

Gee, what you're doing is wonderful. I wish I had the courage, know-how, and confidence to do the same thing you're doing. You're right about the colostomy - it's not necessary to speak of that on air. However if you do, it's nothing to be ashamed about. It's up to you though - if you're uncomfortable talking about it, don't.

About the HPV. I have a lot of doubts as to whether or not as many anal cancers are caused by HPV as they say. When I say 'they' I'm speaking of reputable medical sites and my own oncologist, who I love dearly and trust completely. When I was first diagnosed he told me that most anal cancers are caused by HPV and that I probably picked up the virus sometime back in my 20's or 30's. I don't disbelieve him but the statistics I see on this forum do not hold true to that assumption. I only remember four people who've said they tested positive for HPV. And only one (I think) whose tumor tested positive. HPV has many strains and most of us for whom the vaccine was not available may or may not carry one or more of those strains. But this doesn't automatically = HPV being responsible for our cancer.

It's not only the folks on this forum, but my own experience as well. I had uterine fibroids since my early twenties. Because of this I had pap smears twice a year for most of my 20's and 30's. Not once did I have an irregular pap smear result. Now I realize that HPV is very hard to test for correctly and that vaginal pap smears to not equal anal pap smears (which I never had), but one would think that something would have shown up in all those tests.

My tumor was never tested. My oncologist said he doesn't know why but it wasn't. I asked him if my hospital (which is a very reputable one just outside of Boston) reported their results to a higher agency and he said no, they don't. If my hospital doesn't, it's likely that a lot of other hospitals and medical facilities do not report their results either. There are two issues with this: one, if there are many medical facilities not reporting into a major database, the statistics are skewed; and two, how can it be suggested that anal cancer is due to HPV if they don't test the tumor?

Most people on this forum reported either bowel problems, stomach issues, or immune system issues prior to being diagnosed with anal cancer. I suggest that it's possible that those issues are responsible for the cancer and not HPV, at least not the 80% that is the reported statistic. I know I had several years of terrible constipation prior to being diagnosed with a whole lot of pushing and pushing. With no evidence of HPV (I've been tested since treatment with a negative result), I am not blindly believing HPV caused the cancer, but rather trauma to the anal area from the excessive pushing (this went on for a LONG time - I had various tests during this time period and no evidence of cancer was indicated).

The problem with telling people that their anal cancer is due to HPV without proof is that we are all going around believing we have HPV and that HPV caused our cancer. This leads to guilt feelings, including wondering about our spouses or partners and whether or not we've infected them. Also, we/they might not be addressing the other issues that might be involved.

It sounds like your tv station is trying to publicize the cancer/HPV connection, which is wonderful. HPV IS responsible for a lot of cancers. It is very difficult to test for and if I had a daughter, I would be making sure she got the vaccine.

This is probably a very confusing post, but I guess what I'm suggesting is that you mention the necessity to improve the testing methods for HPV and that medical facilities report their finding to whomever it is they should be reporting to. And also that you might mention there may be other causes as well for anal cancer. The vaccine is important to stop the progression of HPV in the human race, but the testing methods for HPV must be improved and medical facilities must test the tumors and report the results so that statistics are as reliable as possible and research into the condition can continue appropriately and fully.

eihtak
Posts: 784
Joined: Oct 2011

It was not confusing at all and very helpful. I just hope I can remember what I want to say. I want to help encourage people to be vaccinated, yet don't want to mislead them either. To the best of my knowledge there are no noteable negative side effects from the vaccine so why would you not even if the statistics are slightly skewed? There is at least some relation to cancer and HPV and it is a step in the right direction I think. I have wondered just what you said myself, that if so many of us were not tested, where are these numbers coming from? I was overall fairly healthy except for severe anemia when my symptoms began and had no prior bowel or digestive issues what so ever, so go figure.

Thanks again, the interview is set for Wed.

RoseC's picture
RoseC
Posts: 485
Joined: Jun 2011

Hi - I'm still an advocate for the vaccine, even if the stats are skewed.

I see it as two different things. One, the vaccine - it may help prevent what we went through. Two, insufficient or incorrect data - because of non-reporting, non-testing, and/or inadequate testing, we who have already been diagnosed may not be being given the correct information.

All my best wishes of luck and thanks are going with you to the interview - you'll do great - I think it's fantastic that you're doing this!

eihtak
Posts: 784
Joined: Oct 2011

When I said "why would you not....." I didn't mean YOU (Rose) just to clarify. I assumed you were supportive of the vaccine. Sometimes I wish we'd all just pick up the phone and talk in person instead of this! Oh well, thanks again.

Marynb
Posts: 1134
Joined: Aug 2012

Rose, you have made lots of good points. The problem is that nobody knows the causation of ANY cancer. It is all done by correlation studies, which can only predict the likelihood of cancer based on certain certain factors from past popultaions of cancer patients. We live in a chemical world. We eat, breathe, and drink new chemicals every day. I have wondered why nobody has made any attempt to determine whether factors were present in my cases. I have had cancer two seperate cancers. Surely, I have had some exposure at some point which is causing cancer. Nobody gave me a checklist of factors. why? They ask whether there is a family history and whether I ever smoked.

I have wondered about the bleach and chemicals on toilet paper, which we directly apply daily to the area, for instance.

I am glad this is being discussed!

RoseC's picture
RoseC
Posts: 485
Joined: Jun 2011

I was really surprised about this. I expected to be asked all kinds of questions - sexual history, environmental factors, anything and everything. And they asked me nothing. Really surprising. I guess there are just too many variables to count? (shrugs shoulders).

mp327's picture
mp327
Posts: 2669
Joined: Jan 2010

I think this is great and I know you'll do well!  I say tell it like it is--this is a disease that does not have to happen to younger generations if they will just get vaccinated.  Let us know how it goes!

pializ
Posts: 235
Joined: Nov 2012

I wonder where the statistics come from? Was there a study? I was not tested for HPV at time of diagnosis, & all of pap smears negative. I think that the 'other' causes probably amount to more than 20%. Rose, I think your suggestions for more knowledge is spot on. HPV is however, a known cause of some cancers so vaccine is good. Program in UK is for girls aged 14/15. & has only started in recent years, so my daughter missed out. 

lp1964's picture
lp1964
Posts: 745
Joined: Jun 2013

The HPV vaccine is effective in girls up to age 26. Even if I had to pay cash (it's a few hundred dollars) I would have my daughter vaccinated to prevent genital warts, cervical or any other cancer.

Regarding HPV and anal cancer. I don't believe in a strong relation between the two. During forplay and vaginal intercourse there is a thousand times more contact between the exterior of the female genital and the penis than the anal area and the two has exactly the same type of skin. So how come that we basically never see cancers similar to anal cancer originating from the vulvar region.

Take care till next time,

Laz

sephie's picture
sephie
Posts: 502
Joined: Apr 2009

i am going to be graphic...the skin area between the vagina and  the anus is very short...the balls of a man can carry HPV...the balls usually lay on the place below our vagina...also , after ejaculation , the fluids usually slide down toward the anal area....this is all it takes....yes, vulvar cancers are related to HPV...skin to skin contact is all that is needed.... now, if it is not due to HPV,  anal cancer can be due to chronic inflammation, irritation,  low immunce system...,,,, sephie

eihtak
Posts: 784
Joined: Oct 2011

Again thank you.....we are all ok with graphic language but I'm hoping to choose my words tastefully when on air. You are very accurate in your description though. My immune system was very weak when I got diagnosed and am sure that was my trigger!

eihtak
Posts: 784
Joined: Oct 2011

Just want to add that the vaccine is also effective in boys of the same age. Not enough talk about that it seems.

jcruz
Posts: 180
Joined: Jan 2013

Yes, let's not forget about the boys and young men who will also benefit from getting the vaccine.

RoseC's picture
RoseC
Posts: 485
Joined: Jun 2011

After all, it takes two to tango.  :)

jcruz
Posts: 180
Joined: Jan 2013

Seems vulvar cancer is also a rare one but is related to HPV infection in some cases.

Quoting from the ACS page on vulvar cancer:

"In the United States, vulvar cancer accounts for about 4% of cancers of the female reproductive organs and 0.6% of all cancers in women. In the United States, women have a 1 in 406 chance of developing vulvar cancer at some point during their life.

The American Cancer Society's estimates for vulvar cancer in the United States for 2013 are:

  • About 4,700 cancers of the vulva will be diagnosed

  • About 990 women will die of this cancer."

and

"About half of all vulvar cancers are linked to infection with the high-risk HPV types. HPV linked vulvar cancer is more common in younger women and is seen less often in older women. Some doctors think there are 2 kinds of vulvar cancer. One is associated with HPV infection and tends to occur in younger women. The other kind is not associated with HPV infection, and more often is found in older women."

 

I did have cancerous cells on my vulva and was given extra radiation treatment targetted to that area.

lp1964's picture
lp1964
Posts: 745
Joined: Jun 2013

...that there is correlation between anal and vulvar cancers and HPV. The point I wanted to make that you don't necessarily have to have anal sex to get anal cancer like many people suppose and suggest in the world and bring up homosexual men as an example. 

Laz

 

Marynb
Posts: 1134
Joined: Aug 2012

Sometimes I have to scratch my head and wonder how I ever got hpv when I had been married over 20 years? What the heck ?

sephie's picture
sephie
Posts: 502
Joined: Apr 2009

hey, i got off into a tangent....do the best you can.....what a wonderful opportunity..... i know that you can not state all the graphic details because it would be r rated , maybe x rated....you can do it and will help a lot of people...... hugs to you.....  sephie

eihtak
Posts: 784
Joined: Oct 2011

Hi Everyone, and thank you so much for your input. I just completed the interview and although it was longer than I anticipated I know they will cut a lot and may end up just a blurp! At least I educated the news staff and that is a few more than yesterday. I was able to be fairly descriptive without being too graphic, but again the focus was mostly to encourage getting the vaccine.

I keep replaying everything I said and how I looked and hope I won't be disappointed! Oh well.....done.

Marynb
Posts: 1134
Joined: Aug 2012

That is great! So glad you did this. I wish there was an active anal cancer foundation that could do a national media blitz. There is so much misunderstanding about this disease and because it is most often misdiagnosed for years, the public needs to know the symptoms so lives could be saved!

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