Friday, July 31, 2009

Overcoming the Perpetuation of Inaccurate Information

One would think that all it would take to overcome the perpetuation of wrong information would be to provide accurate information. Apparently it's not that simple.

For some time now I have contributed to a variety of HPV healthboards answering questions about HPV for the fearful, the newly diagnosed, those in shock, the occasional friend or family member and all to frequently those with what I call the leapfrog mentality. The people who obtain a piece of inaccurate information and then leapfrog that information from post to post to post. The result? The repeated dissemination of inaccurate information which is detrimental to everyone involved.

Even when corrected, they persist in spreading false information apparently oblivious to the potential damage. In some cases it is not false information as much as a false belief. An example of this is perpetuating the falsehood that HPV related cancers are "rare". This brings along with it another belief, that because it is "rare" it is something that one need not be worried or even concerned about. As a result, women fail to get the recommended screenings or overlook symptoms until in some cases it is too late while remaining blissfully ignorant to the fact that HPV is being connected with cancers affecting more bodily parts and organs at an alarming pace.

Even doctors fail to recognize the very real threat from this virus. Just as the connection between HPV and cervical cancer was dismissed over 25 years ago, the connection between HPV and other cancers such as anal are still minimized and/or dismissed completely by many doctors today.

I am now going through treatment for a second time for invasive anal cancer. No one goes through the Nigro protocol (named after the man who developed this treatment for anal cancer over two decades ago) twice, but I am. The reason no one goes through it twice is because typically this protocol involves chemotherapy in combination with radiation. The dosage of radiation is usually 5,000 to 6,000 cGy (centigray = absorbed dose of radiation). On my last journey into hell with this treatment the pain was so unbearable I was forced to stop treatment after only 3,000 cGy. Now, 18 years later and only because the treatment had be halted early am I able to undergo this protocol again otherwise, it would have been an immediate colostomy.

I have made many friends along the way who are going through or have gone through treatment for anal cancer. By the way, 90 to 99% of anal cancers are HPV related. I have also heard more horror stories than I care to recount regarding the diagnosis of anal cancer in these individuals. Far too many of them were dismissed by their doctors as having "bleeding hemorrhoids". For many who received second opinions and their disease was caught early, they have survived. For others, by the time they received a second opinion it was to late, and for still others they weren't diagnosed until severe bleeding from the anus brought them to the emergency room.

Far too many colorectal surgeons are unaware of the HPV connection. Far too many choose the "most common" explanation for rectal bleeding and leave the diagnosis at that, a bleeding hemorrhoid. Even when presented with an HPV related anal cancer, some colorectal surgeons provide one of two options: wait for it to become invasive or, get a colostomy. What happened to something in the middle? There is a surgical procedure referred to as a wide local excision. This involves surgically removing the affected area along with a wide margin around it in hopes that the cancer is contained within those margins. In my case, by the time I got to a surgeon who could and would perform this surgery, my in situ (localized not yet invasive) cancer had become invasive. I actually had three surgeons all of whom told me that upon visual inspection of the area "everything looks normal". It was only because I insisted that this be biopsied that the diagnosis of squamous cell CIS (carcinoma in situ) was made.

The fourth surgeon who finally performed the wide local excision knew the minute he examined me that something was wrong. He even informed me that he believed it had become invasive. He was right. I asked why it was so easy for him to see what three other surgeons did not. His answer - a trained eye. So what does this say for the other three surgeons I had seen. Well, the main thing it tells me, is that they need more training! Beyond that, it tells me that they and most other physicians need more education regarding HPV.

Farrah Fawcett brough anal cancer to the world's attention back in May when Farrah's Story aired on television to an audience of over nine million viewers. While nothing was mentioned about HPV at least anal cancer came out of the shadows. My goal, is to make sure it never disappears back into those shadows ever again. Anal cancer is on the rise, and has been for some years now. I have to wonder how many people are undiagnosed or shall I say misdiagnosed with bleeding hemorrhoids and so are not included in the statistics.

Here's another statistic. If a woman has CIN (cervical intraepithelial neoplasia also caused by HPV and resultant cervical cancer if left untreated), she has a 37% increased risk of developing AIN (anal intraepithelial neoplasia) and anal cancer.

The increasing knowledge of HPV by doctors is painfully slow and anal cancer is not as rare as people may think. One thing is painfully true however; if you are the one diagnosed with anal cancer then "rare" becomes irrelevant when you're on the wrong side of the statistics regardless of the numbers!