Monday, February 27, 2012

Why the Focus on Cervical Cancer Must End

Now that I have raised the ire of anyone who has, has survived, or has lost a loved one to cervical cancer, let me delve further into the importance of ending the focus on cervical cancer.

I am certainly not insensitive to the issue of cervical cancer. I myself have dealt with precancerous lesions of the cervix. Neither am I lacking in empathy for those who are survivors, I am a survivor myself – twice!

The fact still remains that cervical cancer is diagnosed in approximately one-half a million women across the globe each year and that half of that number succumb to the disease on an annual basis.

There are significant organizations whose sole focus is the prevention of cervical cancer and they work tirelessly to educate others and raise money for everything from research to the development of educational materials and in some cases even patient assistance.

Cancer is a term which still strikes fear in the hearts and minds of most people diagnosed with it and even those who aren’t, but I don’t think anyone with cervical cancer would align themselves with groups fighting lung cancer, pancreatic cancer or colon cancer. While the commonality which exists because they are also a form of cancer there is a significant difference. That difference is the fact that cervical cancer, unlike the other cancers mentioned, is the result of a virus – human papillomavirus (HPV).

Cervical cancer was the first cancer identified in 1983 as being the result of HPV (HPV16). The connection was only strengthened in 1984 when a second strain of HPV (HPV18) was also identified as the cause of cervical cancer. Between the two strains alone, they combine to account for approximately 70 percent of all cervical cancers. Various other strains of HPV make up the difference bringing the total of all cervical cancers attributed to HPV to 99.9 percent.

Since the approval of the first HPV vaccine (Gardasil) in 2006, its manufacturer, Merck Pharmaceuticals has initiated numerous public education campaigns aimed at driving home the connection between HPV and cervical cancer. The organizations which have cropped up against cervical cancer have consistently done the same. The end result has been that those who are aware of HPV will tell you that it is the virus which causes cervical cancer. If this were a singular cancer, such as lung cancer, I would say that their efforts have been an overwhelming success. The problem is that it isn’t a singular cancer.

In testimony given to the Administrative Committee on Immunization Practices by Maura Gillison, MD and lead author on oropharyngeal research and an oncologist at Ohio State University, at the current rate HPV-induced oropharyngeal cancer will exceed cervical cancer in numbers by the year 2020 (less than a decade). According to the CDC cases of anal cancer are increasing at an annual rate of three percent, which is quite significant and there are more than 5,000 diagnosed cases of anal cancer annually.

In addition to this, the CDC, whose figures are not current but in some cases seven years old, indicate that HPV is also responsible for 65 percent of vaginal cancers, 50 percent of vulvar cancers, 35 percent of penile cancers and 60 percent of oropharyngeal cancers. If these are older figures, one must wonder what they actually are today.

HPV excludes no one. It will infect male or female regardless of age, nationality or ethnicity though some groups have a somewhat higher risk. These cancer statistics from high risk HPV do not even take into account the benign (non-cancerous) conditions resulting from HPV. There are estimated to be approximately 250,000 cases of genital warts annually in U.S. men alone and HPV is also responsible for the majority of cases of recurrent respiratory papillomatosis which affect infants and young children.

If those of us affected by HPV and others whom for whatever the reason advocate against cervical cancer truly want to be heard, then it is time that we align ourselves, combine our voices and our numbers and advocate against the one thing that connects us all – HPV. Not a particular form of cancer caused by HPV but the virus itself.

The focus on cervical cancer has on some level, functioned to lessen the public’s understanding of the true extent of the danger that HPV represents. Focusing on cervical cancer instead of HPV itself functions to exclude the cases of anal, vaginal, vulvar, penile and oropharyngeal cancer diagnosed each year. It also functions to alienate its victims.

Those of us with an HPV-induced cancer not cervical in nature experience the physical and emotional pain and anguish just as those with cervical cancer do. We live with the damage in some form or another and what we go through in terms of treatments/procedures are, in some cases, more severe than cervical cancer.

As a two time survivor of anal cancer resulting from HPV and speaking for those of us with precancerous or cancerous lesions other than cervical, we are no less
significant simply because our numbers may be smaller. In many cases, the focus on cervical cancer to the exclusion of anal cancer has left many an anal cancer patient misdiagnosed and having to endure far more severe treatment because of advanced disease states when the diagnosis is finally made. The lack of education amongst physicians of other specialties such as colorectal and oral surgeons certainly does not benefit the patient. And, while HPV has been identified as causing 90+ percent of anal cancers, there is still no organized screening program as there is with the Pap smear, to pick up the same cellular changes which occur in the cervix. The HPV test is also, regardless of which one since there are now numerous companies offering the test, not advertising or promoted for anal HPV.

Since 1983, HPV has gone from being responsible for one cancer (cervical), to being responsible for six, and there may be more to come. It is long past time to stop creating divisiveness through a myopic focus and to recognize that what is needed, what is desperately needed, is to unify the voices of every individual who suffers from HPV related cancer. Our adversary should not be seen as cervical cancer or anal cancer or any of the other cancers for which HPV is responsible, but HPV itself! I have been aware for over two decades that HPV is responsible for far more than cervical cancer but most are not. I know for myself only because I have been unfortunate as to have experienced it virtually everywhere else in addition to cervical, most have not.

It is essential to expand the public’s knowledge about HPV beyond that of cervical cancer alone. Only once we come together in unity as victims of HPV and not one of its cancers, will our voices truly be heard and the need to recognize this issue on the larger scale that it exists, get the attention it deserves.

"CDC - HPV-Associated Cancers Statistics." Centers for Disease Control and Prevention. N.p., n.d. Web. 26 Feb. 2012.

"Recommendations on the Use of Quadrivalent Human Papillomavirus Vaccine in Males — Advisory Committee on Immunization Practices (ACIP), 2011." Centers for Disease Control and Prevention. N.p., n.d. Web. 26 Feb. 2012.

"CDC - What CDC Is Doing About HPV-Associated Cancers." Centers for Disease Control and Prevention. N.p., n.d. Web. 26 Feb. 2012.

" Oral Sex, Throat Cancer And HPV Vaccines” // Pharmalot 4th, Ed Silverman // October, and Pharma Blog . N.p., n.d. Web. 26 Feb. 2012.

"CDC Data & Statistics | Feature: Cervical Cancer Rates by Race and Ethnicity." Centers for Disease Control and Prevention. N.p., n.d. Web. 26 Feb. 2012.

" Human Papillomaviruses and Cancer - National Cancer Institute." Comprehensive Cancer Information - National Cancer Institute. N.p., n.d. Web. 26 Feb. 2012.

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

Friday, February 17, 2012

Can HPV Go Away on Its Own - Part 2

In Part One of this article, I talked about the controversial question - Can HPV Go Away on Its Own? The answer you receive may be yes, but this is not actually the case. It is being given in a certain context (which of course is NOT explained) and leads to much confusion.

The context essentially is that it typically takes up to 24 months for the body’s immune system to render the virus dormant. The answer yes is because of a lack of understanding; because of a lack of education when it comes to the medical aspects of the virus, HPV leads to confusion of our educators and confusion for the patients.

Our educators, i.e. our doctors, nurses, nurse practitioners and other medial professionals fail to understand that a simple word like “clear” can create such confusion for patients and lead to the belief that the virus is literally gone because it does not show as positive on an HPV test. Worse yet, women equate a negative Pap test with not having HPV. Why? Because they have never been told otherwise and mainly because the emphasis has been placed on HPV as it relates to cervical dysplasia (cell abnormality) and cervical cancer and not much else.

When those responsible for explaining HPV to us understand for themselves that HPV can become dormant for weeks, months, years and even decades; when they understand that the HPV DNA remains within our cells; when they understand that HPV is responsible for far more than cervical cancer, only then can they accurately and adequately educate us regarding the true answer to this question.

Cervical cancer was the first cancer connected with HPV. Since that time, HPV has been connected with vaginal, vulvar, anal and oropharyngeal cancers as well as penile cancer.

Unlike bacteria, a virus requires access of its DNA into our own cells to replicate. If our immune system keeps these levels dormant or at lower levels than are detectable during testing, this does not mean that the HPV DNA has disassociated with our cells, it is merely undetectable but not that it isn’t there, and under certain circumstances can become active once again. When HPVs own proteins, E6 and E7, allow for the literal shut-down of our body’s tumor suppressor proteins it is then that HPV can “take hold” and lead to the unregulated growth of cells. Typically, when a cell is or becomes abnormal, our proteins instruct those cells, in essence, to self-destruct. But when those proteins have been compromised these now mutated cells do not self-destruct but continue to reproduce mutations and all.

For some women, they may have but a single HPV infection in their lives. Their immune system keeps the virus dormant and they never experience any further issues Again, this does not mean the HPV no longer exists but that your immune system is doing a wonderful job. This is what happens the majority of the time however that knowledge should not give you a false sense of security either. Obviously someone makes up the statistics of the minority and it could just as easily be you.

For other women not only do they experience repeated episodes of HPV lesion development (precancerous, cancerous or both) but can also experience multi-focal (more than one area) disease. It can affect both the cervix and vulva or cervix and anus or in cases such as mine, the cervix, vulva, vagina and anus.

Women can get very excited when they receive their Pap smear results and they are negative. While this can be great news, women need to understand that HPV affects more than the cervix so while the cervical cells may not show evidence of HPV, other cells may such as vagina, vulva or anus. It is important for women to know enough to ask that their doctor examine these other areas when performing a Pap smear. It is also important to know that prior cervical involvement brings with it an increased risk of anal involvement. If necessary, you may need to consult a colorectal surgeon for an anal Pap. Currently Dr. Joel Palefsky, leading infectious disease specialist specializing in HPV is working with the NIH (National Institute of Health) to develop a screening protocol specifically for anal cancer as currently exists for cervical cancer. While this will take years to develop, performing the exam in the interim can still be done. Finding a physician capable of doing one may be another story.

Most women I have spoken to who have HPV to some degree or another have expressed an absence of the virus with a recurrence occurring subsequent to a stressful or number of stressful incidents which have occurred in their lives. For others, (including myself) many women never had any issues with HPV until after they became pregnant, a condition which does tax the immune system. Some women who have had precancerous lesions diagnosed prior to becoming pregnant were found to have the lesions progress in severity during their pregnancy. This particular situation has also happened to me as well.

In closing, let me say that ultimately people will choose to believe what they will regardless of any factual information presented to them. Having lived with HPV, off and on, since my initial diagnosis in 1987 constitutes a significant length of time. This has allowed me to experience, first hand, the developments and achievements in the field of HPV research in addition to the

Wednesday, February 15, 2012

Does HPV Go Away on Its Own? Part 1

The Ultimate Controvery - Does HPV Go Away on Its Own? Part 1

One of the reasons that the question still persists regarding whether or not HPV goes away on its own is because the answer is both yes, and no. Each of these answers depends upon numerous factors including some understanding of the medical aspects of virus.

The body is truly incredible when one stops to think of all the functions it carries out at any given moment, all acting in conjunction with one another. It would be wrong, as many doctors and nurses do (usually the result of misunderstanding the virus themselves), to simply state that in the majority of cases the body’s immune system will rid itself of the virus. It would actually be more correct to say that the virus never truly leaves. This is especially true when it comes to the immune system and the general lack of peoples knowledge regarding the body’s tumor suppressors proteins of its own.

HPV, which is short for Human Papillomavirus, was actually discovered as the cause of cervical cancer in 1983 by Professor Harald zur Hausen, MD Dr. zur Hausen had been studying HPV, which is named in sequence of its finding (come to be known as strain) and took quite a number of years before he discovered the first HPV strains associated with cancer.

It was during 1983 that his research lead to the discovery of HPV16, which was found to be present in 50 percent of the cervical cancer cells which he was studying . A year later, he discovered HPV18 which was shown to exist within yet another 20 percent of these cancer specimens. Today, these two HPV strains alone, 16 and 18, are known to be responsible for a total of 80 percent of all cervical cancers. HPV16 and HPV18 are also known to be responsible for 90+ percent of anal cancers.

It now becomes important to understand how the body responds when introduced to the HPV virus. The tumor suppressor proteins contained by the body are referred to as p53 and pRb. p53 is the most commonly mutated tumor suppressor protein involved in cancer. Such is the case with cancers involving HPV as well. These tumor suppressor proteins were only discovered in the late 1970’s, a few short years before the discovery of HPV16.

It is important for the purposes of this article to make the distinction between low risk and high risk HPV. Low risk strains of HPV (like 6 and 11) cause genital warts, and other low risk strains of HPV cause the warts typically found on the hands. These are not the strains of HPV we are discussing here. It is the high risk strains of HPV which can go on to result in precancerous and cancerous lesions and these are the ones which we speak of here. There are approximately fourteen high risk strains of HPV known to potentially result in cancer with HPV16 and HPV18 being the most common.

Research has shown that the majority of individuals positive for high risk HPV infection will not remain so at twenty-four months. However, this would depend largely on the degree of abnormality present within the cells. In the case of low risk infection, these are the ones which typically will become dormant within twenty-for months. It is for this reason that many physicians will choose the wait and watch method before performing any more invasive types of procedures.

It is important for women to understand that there two different tests of importance here, the Pap test, and the HPV test. In more cases than not, women will need to ask for the HPV test as many physicians will not perform the HPV test unless the Pap is positive. Research has shown that a Pap test can be negative yet the patient still be positive for HPV. So, despite current FDA rulings which do not allow HPV tests until 30 years of age and older, ask your doctor to perform the test anyway. It could save your life.

The Pap test reveals abnormalities within the cells themselves, while the HPV test actually looks for the HPV DNA itself within your cells. Less abnormal cells (serious) which will be determined based on the results of the Pap smear and histology and more likely to become dormant may often be treated immediately to prevent further progression to a more abnormal (serious) condition such as invasive cancer. This is why it is important for women to follow-up when it comes to their Pap tests and now, HPV testing as well.

If you are one of these individuals whose infection has resolved after twenty-four months, it has done just that - resolved. It has not vanished, disappeared or otherwise been stricken permanently from your body, as it has already been incorporated into your own cell DNA.

HPV contains tumor suppressors within its own arsenal referred to as E6 and E7. These function to deactivate p53 and disable pRB. It is E6 and E7 which enables the virus to enter your own cells, utilize them to replicate (duplicate themselves) indefinitely, which is essentially the definition of cancer - the uncontrolled replication of cells.

In Part 2, we will discuss the uncontrolled replication of HPV, in addition to various risk factors and ones own immune system as they contribute to recurrent HPV infections.

Sunday, January 15, 2012

How Surviving Cancer can be a Curse

Fifty some-odd years ago a woman and her friend both of whom has survived breast cancer got to talking about how important a support group would be to others like themselves.

They decided to take out a half-page ad in the New York Times. Upon calling, it was explained to the woman at the NY Times that the add should read that a meeting was being held for all of those pateints having survival breast cancer, and went on to give the address and time of the meeting.

The caller was politely told that not only were they not allowed to use the word cancer, they certainly could not use the word breast either. Outraged and I would think much like I feel a good portion of the time, she was told that she could rephrase the announcement to state that a meeting was being held for all those who has survived diseases of the chest wall.

The organization which these two woman created was called "Reach to Recovery" and was later taken over and is now run by the American Cancer Society. Over fifty years later people are still having issues with names of body parts as in anal cancer for example.

While breast cancer has certainly developed a significant following, such a following needs to be developed regarding HPV especially when it is responsible for so many known cancers. How can you make a difference? Get your child vaccinated and talk to other parents (if you are a parent with a child of age to be vaccinated) or your friends about the need to get vaccinated early to avoid this cancer causing virus.

How Regulations Penalize Cancer Survivors

Recent research which took place over a period of 14 years and utilized two irrefutable government sources for its statistical information was presented at the 2011 annual meeting of The American Society of Clinical Oncology.

This research used both the cancer registry statistics as well as the U.S. bankruptcy court records and involved nearly a quarter of a million cancer survivors. The results, that bankruptcy rates among cancer survivors at one year after diagnosis was nearly twice as high as that of the general population. On average, bankruptcy rates increased four-fold within the five year period after diagnosis

The U.S. bankruptcy laws changed dramatically in 2005 making it more difficult for an individual to file bankruptcy. The filing of a bankruptcy was an action which was intended to give an individual a “clean slate” however when it comes to cancer survivors it is anything but.

Based upon this research, cancer patients who have struggled through horrific treatments in order to survive now face yet more stress and hardship from a financial standpoint. Is it reasonable to penalize cancer survivors simply for having survived? Yet this is exactly what happens when a cancer survivor must file bankruptcy.

Federal and State programs (First Time Homebuyer Assistance) which exist to assist lower income families in obtaining a home by providing funds for down payments as well as closing costs stipulates that a bankruptcy must have been discharged (finalized by the bankruptcy court and all debts absolved) a full two years before an individual can even submit an application for assistance.

There are many financial hardships which cancer patients/survivors endure one of which may be the loss of their jobs and their homes. The First Time Homebuyer Assistance Program mentioned above will provide assistance to first time home buyers which also includes those who have not owned a home in three years. A cancer survivor who has lost their home resulting from their medical expenses three or more years ago would also be eligible. However, it is more than likely that they also may have had to file bankruptcy and therefore simply cannot catch a break. The approval guidelines require that they cannot file an application until two years after their bankruptcy discharge date. Since every application is taken in order of submission, people are placed on a waiting list until their application is approved. Based on these requirements, they would not even be allowed to submit their applications and allow their time on the waiting list to be applied to the necessary two year period. They must wait two years to submit their applications and then wait yet again on a waiting list. Funds are limited and depending upon how many applications are received their application may extend into the following fiscal year.

Being a two-time survivor of cancer I can say that while it isn’t something which occupies my thoughts on any regular basis, there always exists in the back of my mind the possibility of a recurrence. I think it is safe to say that this is true for most cancer survivors on some level.

The longer a cancer patient survives after treatment the greater the likelihood that they will end up having to file bankruptcy. Out-of-pocket expenses associated with follow-up testing, follow-up doctor visits and prescriptions amongst other things continue to place a financial burden on survivors.

If there was ever a need for a true “clean slate” it is for the cancer survivor, and given this recent research bankruptcy laws should be amended for those having to file as a result of cancer. Bankruptcy filings resulting from cancer should not be allowed to be included on the individual’s credit report and all associated discharged accounts should be removed as well. This would truly provide the cancer survivor with a “clean slate” from which to live out their remaining lives. Congress needs to amend the bankruptcy laws to provide such protection for cancer survivors.

As for the First Time Homebuyer Assistance Program referred to earlier, these survivors would no longer be penalized when it comes to receiving funds for a home. Losing one’s home is a devastating event for anyone but even more so for a cancer survivor who has often lost their job as well and in some cases are unable to return to work as a result of complications of their treatment. This often leaves them having to rely on Social Security Disability. They may still be able to afford a small mortgage payment but the existence of a bankruptcy will prevent them from qualifying for one, especially in the current banking climate when even those with good credit have difficulty.

Even the thought of a cancer diagnosis is something which strikes fear in the hearts of most people. For those who have lived it, the diagnosis is nothing compared to what they must endure in their struggle to survive. This research makes clear for the first time the severity of the financial fall-out for cancer survivors compared to the general population as it relates to bankruptcy. It also speaks to the need for change in our bankruptcy laws which respect what these individuals have had to endure to survive and compassion to allow them to continue the lives they struggled to keep without further discrimination and hardship.

"Bankruptcy Rates Higher Among Cancer Survivors." Knowledge is Power! Consumer news, reviews, complaints, resources, safety recalls. N.p., n.d. Web. 2 Jan. 2012.

Wednesday, October 26, 2011

ACIP Finally Recommends HPV Vaccine for Boys/Young Men

After two years of stalling, the ACIP (Advisory Committee for Immunication Practices) has decided to finally make the HPV vaccine recommended for boys and young men instead of approved for them which is where they left it over the past two years.

In the meantime, those same young boys have grown into young men who have inevitably passed on this virus to any of not all of the women with whom they have had any type of sexual contact. Even kissing is now being considered as one of the means of transmission for the virus.

It has truly been remiss on the part of the ACIP as well as the CDC for not having employed research information available more than two years ago and to finally get around to using it now. The damage they have done is irreparable and we can only hope that any campaigns which the CDC now develops in light of this will be sufficient to make up for the damage they have already caused. To follow is commentary by Director of the CDC's Infection Disease unit who refers to recent information. While additional information has been collected, this information to which she refers has been in existence of over two years. I'd like to know how Dr. Schuchat explains the CDC not having put pressure on the ACIP in addition to running their own campaigns (of which I've seen none) and allowing more American citizens to become at risk for the six cancers which HPV is now known to cause: