Wednesday, February 22, 2012

HPV Victims Need ONE Voice

More often than not when people speak about HPV it is within the context of cervical cancer. HPV is 99.9% responsible for all cancers of the cervix so it is understandable that it would receive a significant amount of attention. It was also the first cancer identified as being caused by HPV in 1983 by Professor Harald zur Hausen, MD.

Subsequently, HPV has been identified as the cause of numerous other cancers as well and most of these have gone ignored both by the medical community and by the media. I have personally dealt with HPV causing high grade precancerous lesions of the cervix, vagina and vulva each requiring a multitude of procedures, surgeries, and even chemotherapy yet none of them were considered an invasive cancer. The two cases of invasive cancer which I survived which was also caused by HPV was anal.

Experts in the field of anal HPV and cancer would say that 100% of anal cancers are caused by HPV. Currently, the CDC lists HPV as responsible for 90% of the anal cancers. There comes a point where hot is hot and whether it is 102 degrees or 103 it's hot. The same goes for HPV related anal cancers, in my opinion. Once you have hit 90% as an identified cause are we really going to quibble over the remaining 10%?

Do those with HPV cancers not involving the cervix deserve any less attention than those with cervical cancer? It cannot be denied that over a quarter of a million women continue to die each year of cervical cancer with approximately half a million being diagnosed. Is the radiation therapy, chemotherapy or surgery that an anal cancer patient goes through any different than what a cervical cancer patient goes through? While I have not had radiation to the cervix, what I can attest to is the fact that radiation for anal cancer results is significant proctitis (inflammation of the bowel) with subsequent episodes of uncontrolled diarrhea. The severe burns to the skin run from the area of the urethra, vagina (often up into the opening of the vagina), the peroneum and surrounding the anus itself. Imagine these burns being continually exposed to episode after episode of diarrhea and the delayed healing and further excoriation that this causes?

Unlike the cervix which (if you've already had your family) is not required for the daily functions of life the anus is, unless of course you opt for a colostomy instead but initially and at least until healing has occurred to determine any sphincter damage this is not something people typically opt to do especially with smaller less invasive cancers.

I specifically remember having to carry around what they call a Peri-bottle which is simply a bottle with a pull-up top allowing you to squeeze, in my case, warm water from the bottle while urinating. The act of urinating itself resulting in such severe pain when the urine came in contact with the radiation burns that the bathroom was simply a nightmare.

Is a woman having to have both sides of her vulva removed any less traumatic than having one's uterus removed? I think only if you haven't had and desire to have kids. If you've done that, then having one's external genitalia mutilated and forever altered is very traumatic. I know, I've had it done!

As an HPV advocate it is very difficult for me when all I hear about is HPV and cervical cancer. It is, for those who advocate against cervical cancer, an outright choice to exclude the other HPV induced cancers and functions to alienate all the other victims of HPV who don't happen to have cervical involvement. Instead, each individual who advocates against cervical cancer should be advocating against not just cervical cancer, but HPV in general and all of the cancers which it causes.

There should be no sense of disrespect for those whose HPV has caused a cancer other than cervical, no less-than status. At the same time while holding no disrespect for anyone having to go through cervical cancer - I can live without my uterus and I can live without my cervix but I can't live normally without my anus! It's that simple.

We ALL need to come together as one voice