Monday, December 13, 2010

Children and the HPV Vaccine

It has been decades since children heard the words, “Don’t go outside and play”, or “You cannot go outside and play with your friends. As a matter of fact, it has been so long, that parents of young children today have probably never heard those words, nor did their parents – perhaps their grandparents though.

Years ago, children were sequestered inside their homes, unable to go outside as they do today and interact with their friends. The reason – disease, but not just any disease, communicable deadly diseases such as polio, typhoid fever, measles, mumps and rubella. These diseases claimed thousands of lives each year.

It was not until mass immunization came into practice, requiring school-aged children to be vaccinated if they were to attend school that things changed. Today when parents visit their pediatricians, they are given a list of required immunizations required by law. If their child does not have these immunizations when it comes time for school, they simply will not be admitted.

Cancer is a disease which has killed hundreds of thousands of individuals during this interval and prior. However, until recently (about thirty years ago) several cancers, in particular cervical and also Hepatitis have been linked to viruses.

Since its connection to cervical cancer in 1984, and the advent of HPV testing, the number of cases of cervical cancer in the United States has decreased dramatically. However, in other less developed countries cervical cancer still remains the number one cancer killer in women. Also since 1984, HPV has been found to cause numerous other types of cancer including vulvar, vaginal, anal, and penile – all genital in nature. HPV is considered the number one communicable sexual disease with 80% of the population being infected with HPV at some time in their lives.

What is alarming is that more recently, HPV has been shown to affect other organs not considered sexual in nature such as the head/neck, mouth/tonsil and even lungs. Who knows how many other cancers are indeed causes by this one virus?

In many states the HPV vaccine was made mandatory for school admission. Many of those states are reconsidering their decisions with some rescinding earlier rulings. Is this a good thing? Not given research showing that the human papillomavirus can be transmitted through means other than sexual contact but via foamites.

Foamites are inanimate objects which can harbor the virus. A virus which is very difficult to destroy even at very high temperatures including those normally found in your washing machine. Many ill-informed parents are refusing to have their children immunized against HPV but it is just those parents who should be asking themselves how often their child may share a drinking cup or utensil with a classmate in the cafeteria.

Most parents would agree that they do not want to isolate their children from social interactions with friends which aid them in becoming well-rounded adults. Nor do they want to expose them to any form of cancer and even with the idea that celibacy can prevent exposure to HPV there is no test for men so a wife can still acquire the virus from her husband even if she has remained celibate.

It is time that parents view the human papillomavirus as the threat that it is and regulated or not, to have their child immunized against this proven cancer causing virus. Speak with your pediatrician or family doctor and research information of HPV at various reputable websites such as

We are all concerned for our children’s health, but I don’t think any parent wants to have to answer their child’s question, “Mommy, why can’t I go outside and play with my friends?”

Monday, November 29, 2010

HPV Vaccine

Recently, some state legislators have taken up action against the mandatory administration of the HPV vaccine in young girls. In light of the vaccine’s high success rate in preventing cervical cancer many states passed laws which added Gardasil to the already existing list of mandatory vaccinations required for children to enter school.

A number of things have changed since those laws were enacted. First off, the FDA approved the vaccine for use in boys and young men, a step forward in helping to prevent the ramifications of HPV in that age group. Secondly, there has been much more attention paid to foamites.

Foamites are inanimate objects which can harbor the virus particles and carry them from place to place. An example of this can be as simple as one’s finger but can include other simple objects as well.

People have been asking for some time if the virus can be contracted from such things as underwear or towels and the answer appears to be a resounding yes. The virus has been found on the underwear of women known to have HPV and towels are just another material source through which the virus may be transferred.

Unfortunately, this is a very virulent (strong/aggressive) virus and one that is very difficult to destroy even at very high temperatures. This brings us back again to the question of removing the vaccine from the mandatory vaccination list for school-age children.

One such legislator in Virginia has stated that HPV does not have the likelihood of being transmitted between these children as with other diseases for which we already provide mandatory vaccinations. Apparently she is not considering the significant research pointing to foamites transmission of HPV when considering putting forth this legislation.

HPV has already been found in saliva, amongst other bodily fluids such as urine, breast milk, seminal fluid and others. How often do school-aged children share that can of soda or other drink – a perfect example of foamites. So before considering rescinding this legislation these legislators, most often not medically oriented, need to become far more educated and up-to-date when it comes to HPV vaccination.

It has taken years for the FDA to approve the use of the vaccine in the prevention initially of cervical cancer. This was then expanded to include vaginal and vulvar dysplasia and cancers. They are on the verge of deciding, this month, whether or not to include anal dysplasias and anal cancer onto that list.

With all the progress that has been made in the five years since the vaccine became available, hopefully legislators will not rescind that progress as a result erroneous information and lack of thorough research.

Wednesday, November 24, 2010

HPV and Oral Cancer

For as long as the media has been mentioning HPV in its articles and news segments, it has been in relation to its sexually transmitted status and as causing dysplasia (cell changes) and cancer in the genital region. This included predominantly the cervix but was also mentioned to include the vagina, vulva and anus. Rarely did the media cover HPV in men and its connection to penile cancer and also anal cancer in men.

Well now, the media has another area on which to focus when it comes to HPV – the mouth. In recent studies at Johns Hopkins, studies have shown at 25 percent head and neck cancers are indeed caused by HPV. Of that 25 percent, 90 percent have been isolated and shown to be HPV strain 16.

Listed as one of the “high risk” strains of HPV, HPV16 causes 50 percent of all cervical cancer, at least half, with the remainder attributed to HPV18 at 20 percent and a combination of others making up the difference.

Many parents who have been against the HPV vaccine being included as part of the mandatory childhood vaccinations offer for their opposition the fact that HPV is not transmitted as many other virus are, such as air-borne. However, so much new information is coming to light about HPV that this may end up being more of an excuse than anything else.

Using the herpes virus as an example, we have been told many things over the years which have since be proven to be untrue. An example of this is the fact that the virus cannot be spread unless the individual is having an active outbreak.

When it comes to HPV, one of the most significant findings of late has been fomites. These are inanimate objects which can carry the virus and transmit it to another individual. Fomites can be totally non-sexually related. The human papillomavirus has been found in various body fluids, among them saliva. What grade-school student hasn’t shared a soda or other drink? What athlete hasn’t shared a water bottle at a sports event?

Until recently, HPV was believed only to be sexually related but now even kissing is in question when it comes to transmitting the disease. This recent discovery that HPV constitutes one-quarter of oral cancers (head/neck) certainly does shed new light on beliefs held less than a decade ago, and while oral HPV can be contracted via oral sex, it requires us to question just how extensive the virus is, and to accept the fact that it is no longer just genitally based.

Monday, November 15, 2010

FDA Should Expand HPV Vaccines' Age Limit

The next few months will be a very significant time, not only for women but for the Gardasil vaccine as well. This is because the FDA (Food and Drug Administration) is holding hearings into whether or not to extend the use of the vaccine. Currently, Gardasil is approved for administration between the ages of nine and twenty-six. When all is said and done, that high age range will be extended to forty-five.

Gardasil is administered in three doses with the cost hovering around $350 for the series. You can often find a physician who is willing to administer the vaccine “off label”, meaning outside of the standard protocol. As a result, the patient ends up having to carry the cost. So why would anyone really care?

Ultimately having girls immunized prior to the onset of sexual activity would be optimal but what about the teenagers and women in their early twenties, the ones who have the highest incidence of HPV infection? Their immunizations would require knowledge of the vaccine in addition to the ability to cover the expense (although Merck does provide financial assistance under certain criteria). Until age twenty-six, insurance would continue to pick up the cost of the vaccine.

So what then becomes of those women over age 26? The highest incidence of cervical cancer occurs in a woman’s thirties and forties. Presumably she has been exposed to the virus for some time, at this point, and if she continues to remain HPV positive (persistent infection), carries a much higher chance of developing cancer. By this point in time, if a woman is going to have HPV she would have shown symptoms by now, say some. Not necessarily. Symptoms of high risk HPV are often so minimal that they are missed or attributed to something else. Because many of the initial signs resolve rather quickly, the woman usually doesn’t give it a second thought.

It is important that the FDA decide to extend the use of Gardasil beyond age twenty-six to the proposed forty-five. A vast majority of women are married and have had children. They no longer need to be concerned that a pregnancy may set off an HPV infection. Having been in a monogamous relationship, their chances of having acquired the human papillomavirus are less than that of those having had multiple sexual partners during that time frame. However, what happens when this couple now divorces? When after fifteen or twenty years of marriage, the woman suddenly finds herself back on the dating scene? Is she not entitled to receive the same protection from this cancer causing virus as younger women? The answer to that question is a resounding yes, and hopefully before year’s end, the FDA will agree.

Monday, November 8, 2010

HPV and Anal Cancer

In the 1980s, we still had not been introduced to the Internet. Who would have thought everyone would spend countless hours playing solitaire for the sole purpose of watching the cards spring from the page. There was no electronic mail or GPS devices, no iPods, iPhones or iPads and no “Google.” There was however one very significant discovery. After decades of devoting his life to research, Professor Harald zur Hausen, MD (photo featured above) discovered that it was the human papillomavirus (HPV); more specifically HPV strains 16 and 18, which were responsible for 70 percent of cervical cancers.

Unlike bacteria, a virus is capable of remaining dormant in the body for months or even years and it does not respond to antibiotics. By the close of the 1980s, medical science was able to test for the virus along with the Pap smear and also to do more in depth studies to determine just which strain of the virus a person had. The request had been made by Professor zur Hausen to work on the development of a vaccine against this virus but was declined.

It was October 1991 when I was diagnosed with HPV-induced cancer even though my initial diagnosis was in 1987. From 1987 until 1991 the precancerous lesions caused by this virus had remained localized mainly to the vulva though there was the occasional vaginal and cervical lesion. Imagine my utter shock when I was informed, after what was to be a routine hemorrhoidectomy after the birth of my daughter, that I had invasive anal cancer.

As an RN I had very close ties to the medical community, I even managed a local radiology practice in Northern New Jersey making physicians in New York within easy reach. My boss became my radiation oncologist as I endured both radiation and chemotherapy. I was 33.

My treatment was complicated by the fact that there was no vast wealth of knowledge regarding HPV related cancers nor was the information which existed, easily accessible. Never-the-less, that treatment, along with surgery and regular post-treatment follow-ups, kept me cancer free – at least temporarily.

In 2008, seventeen years later, I was once again diagnosed with invasive anal cancer. I thought that now things would surely be different. We had the Internet, a means of disseminating all the research results culminated in the almost two decades prior. A means for the average individual, in the comfort of their own home, to “Google” for HPV and cancer.

Don’t get me wrong, it’s not that there wasn’t information to be found. It’s just that the information I found to often be incorrect, misleading and in some cases downright wrong! Women in particular still were not urged to obtain the vaccine against the two most proliferative strains of the virus which had since been developed, and doctors in general were remiss in their overall knowledge of HPV – frighteningly so.

It was for this reason that I decided to write Any Mother’s Daughter. I was not only upset, but angry over the fact that after two decades it was as difficult for women to find out about the virus and the dangers it posed as it had been initially for me in 1991 and this had to change.

I chose to incorporate my own story into the book, allowing the reader someone with whom to connect, while at the same time learning about the virus, how it causes cancer, the diagnosis, treatments and procedures accompanying the diagnosis of high risk HPV. It became my goal, to educate women and others (men and the healthcare professionals) regarding HPV, as well as, to become advocates for their own healthcare in the process.

Bonnie was recently featured in the Orlando Woman Newspaper:
Any Mother's Daughter~One Woman's Lifelong Struggle With HPV: Page 8:

Thursday, September 23, 2010

A Need For Change

I have wanted to blog on this issue for some time. I suppose it was a culmination of several things which have made this an appropriate time to do so.

I make clear on my website "The HPV Support Network" (previously Any Mother's Daughter) that HPV is not solely about cervical cancer. When Merck began marketing Gardasil, the vaccine to protect against certain strains of HPV, back in 2006 they were faced with a difficult challenge.

While it is well known that HPV is a sexually transmitted infection, marketing Gardasil as such was not going to get the attention it needed. It was the purpose of the vaccine that needed to be focused on and how better to do so than as a means to protect against cervical cancer.

While the initial indication for use was indeed against cervical precancerous lesions and potentially cancer, the vaccine also protects against two strains of the virus which cause gential warts. Perhaps many have noticed that the commercials talk about cervical cancers and "other" conditions caused by HPV. They never use the term genital warts because once again it focuses on the STI aspect. While understandable from their marketing point of view, it certainly does more damage regarding the self esteme of those who have it.

I am not going to get into a post about those who view the vaccine as permission (for young girls) to engage in sexual activity or intercourse. These individuals aren't capable of addressing the fact that a woman can remain celibate until marriage and still contract HPV from her husband because most men show no symptoms and when eight out of ten individuals already have HPV, chances are he does too. And, that contracting HPV doesn't require intercourse and even a virgin can have HPV because of its skin-to-skin mode of transmission.

What I want to focus on is that there are other things which have taken the back seat, if you will, to cervical cancer. If you were to look at the documentation which came with the vaccine initially, you will see that the indications for use include protection from gential warts and CIN (cervical intraepithelial neoplasia). What most people don't know, is that since then that documentation has changed. The indications for use have broadened to include protection against VIN (vulvar intraepithelial neoplasia) and VaIN (vaginal intraepithelial neoplasia) as well.

Why were these now included? Because research substantiated the fact that HPV effects more than just the cervix and, perhaps more importantly, that these lesions can also develop into cancer. Unfortunately there still remains one area excluded from these indications and that is anal.

Most people aware of the connection between HPV and cervical cancer also know that HPV is responsible for 99% of cervical cancers. Not only are people unaware that HPV involves the anus and perianal area but they are frighteningly less aware that it too (like cervical cancer) is responsible for 99% of anal cancers.

It's time that anal cancer gets the attention that it deserves. Unfortunately this is still an area of the body that people have difficulty talking about, and while I can understand this, overcoming those inhibitions will be necessary to save others from this lesser known form of cancer.

Like other cancers, anal cancer knows no limitations. It effects both men and women although women are effected more often than men. You would think that this statistic would make people realize that it is not limited to the gay male population. It is not inhibited by a person's social status - last June, Farrah Fawcett lost her long battle against anal cancer. I had hoped that it would finally begin to get the coverage it deserved. These hopes were quickly dashed when the death of Michael Jackson overshadowed virtually all coverage relating to Farrah.

What follows may be perceived as graphic and you may decide to stop reading now. I would hope not, because it is the initiative of individuals to push past what is comfortable for them that allows for growth.

Anal cancer is quite a horrific cancer. One might argue that all cancers are horrific but the fact is that some bring with them consequences that other cancers do not. For example, because the use of the anus is required on a regular basis it is not an area kept easily clean which inhibits healing. Radiation therapy for anal cancer causes severe burns to the outside skin and going to the bathroom is a nightmare. Not only is it painful having a bowel movement but urine only causes a burning feeling on the already radiation burned tissue.

It's not as though you can put a clean sterile dressing over the area and that is that. Healing after treatment is often compromised by the development of fissures, splits that occur in the skin around and often directly through the anal sphincter. If that description didn't make you cringe, then I can confirm they are extremely painful especially when pressure while going to the bathroom makes you feel like you're being ripped in two. The pain can become so bad that your body goes into an involuntary case of the shakes.

There is another whole aspect of anal cancer that needs to be addressed. When anal cancer has progressed to a certain point, it requires a colostomy - removal of the anus, suturing shut the opening and connecting the remaining end of the intestines through a stoma (opening) in the abdominal wall. A bag is attached to this stoma and the person loses their normal bodily functions having to forever defecate into this bag.

Not only are there severe physical ramifications as mentioned above but there are also tremendous emotinoal ramifications as well. Having to adjust emotionally to the permanent change in body image, worrying about leakage, smells, and a myriad of other issues. I'm not attempting to "gross" anyone out with these descriptions but rather to educate people regarding just what anal cancer patients may and often do endure as an end result. If this patient was concerned about being able to get into a relationship before, imagine how much more difficult this would potentially be after a colostomy.

I suppose one could argue that they still have their life. This is obviously true but at what cost. Does anyone think these issues can be resolved in a week, or month or even a year? As with any cancer, so much of this will have to do with the support system that the individual has at their disposal.

Anal cancer, like cervical cancer, has a high rate of cure when discovered early. However the medical community is poorly educated when it comes to providing screening by way of an anal pap. They often dismiss patient's concerns stating it is too "rare" to worry about. Yet the rate of anal cancer has continued to rise each year for some time now. Individuals with cancer, regardless of the area, deserve the options and resources that all other cancer patients do but these are sorely lacking for those with anal cancer.

The medical community needs to do more, much more, to educate physicians regarding the dangers of HPV and anal cancer. Doctors must take seriously patient's concerns for anal cancer especially if they have already had cervical issues from HPV. Studies show a 37% increased risk of HPV induced anal issues and cancer if you have had cervical involvement. The media must also work to make the public aware that like many other cancers, this can be cured and screening does exist. The only drawback is - will the widespread use of such screening come in time, and that remains to be seen.

Sunday, August 29, 2010

Fighting the Stigma of HPV

Unfortunately HPV, like other sexually transmitted infections, carries with it a stigma. I believe that this stigma is misplaced from the start. HPV is actually transmitted by skin-to-skin contact and it just so happens that genital contact is indeed a form of skin-to-skin contact. However, unlike other STI's, HPV does not require intercourse for transmission. Ongoing research continues to show transmission via other methods with some even suggesting kissing as a potential means of transmission as well as foamites (inanimate objects). So should HPV really be classified as an STI?

Stigmas are not new and continue to inflict emotional pain upon those carrying the label. In the case of HPV, such stigmas can have devastating effects when they function to silence the person infected. The embarrassment may prevent them from speaking to anyone, including those who may be able to shed more light on the virus. In the worst case, it can prevent the individual from seeing their doctor, or by the time they do, it's too late.

The ones that come to mind most often are slut, tramp, hoe, hussy and a host of others all involving the woman's sexual history and number of sexual partners. Just like getting pregnant only takes one act of intercourse so too is true of acquiring the HPV virus.

Personally, I find it very insulting when I hear people on TV joking about STI's. It makes me angry because this person is so oblivious to the harm they are perpetrating. This doesn't have to be only on TV but those people just have such a vast audience to whom they can spread their ignorance. To them it's funny.

Then again there are those who know exactly what they are doing, their actions are intentional, a case of spreading the sentiment that whomever has the humanpapilloma virus got what they deserved. Obviously the underlying message is that those with HPV have done something wrong.

Until people are educated regarding the facts about HPV nothing will change. Education needs to emphasize that HPV is contracted via skin-to-skin contact and that most importantly, the cancers caused by the most common strains of HPV, are preventable. Perhaps if people understood that HPV is also responsible for cancers of the lung, head/neck, throat and other non-sexual organs, they would be open to a more meaningful discussion.

Take advantage of any opportunity to correct those with a misperception about HPV. Learn as much as you can yourself about HPV so you can correct those misperceptions. It is alarming the number of women who still have never heard of HPV. If you are reading this then you are ahead of many others.

Saturday, August 14, 2010

Research Shows Gardasil Effective in Preventing Anal Intraepithelial Neoplasia (AIN)

Most people are familiar with the connection between HPV and cervical cancer. Merck Pharmaceuticals, makers of the Gardasil vaccine focus mainly on HPV as the causative agent in cervical cancer. However, what most people do not know is that it is also the causative agent for vaginal, vulvar and anal cancer.

Since it's approval by the FDA for use in protecting against CIN (cervial intraepithelial neoplasia) and potentially cervial cancer, the FDA has also approved Gardasil for protection against both VIN (vulvar intraepithelial neoplasia) and VaIN (vaginal intraepithelial neoplasia) and the potential cancers which result if left untreated.

There is a long standing connection between AIN (anal intraepithelial neoplasia) and anal cancer to HPV. In fact, HPV is considered to be responsible for 99% of anal cancers. Since the publication of this new research, hopefully the FDA will quickly approve the inclusion of AIN in the indications for the Gardasil vaccine. This research showed a 74% protection rate against the development of AIN lesions.

While an HPV connection was never mentioned, most people are aware that Farrah Fawcett died last June of anal cancer. In the subsequent documentary no public service announcement was made letting people know that this is a preventable cancer. Individuals with HPV and more specifically those with anal involvementfrom HPV were sorely disappointed that a PSA was omitted.

Doctors and other healthcare providers need to be more proactive in educating patients not only about HPV and cervial cancer, but about its connection to these other cancers as well. Unfortunately because of the lack of medical organizations such as the Society for Colon and Rectal Surgeons to educate their members on this connection, it fails to be conveyed to patients. This makes obtaining an anal pap for HPV (similar to the cervical pap) is almost impossible to obtain.

One of the ways that will bring about change is for patient's to continue to request the anal pap. Eventually, providers will realize the significance of offering this service. Professional organizations however must get on board and focus on educating their members. These are preventable cancers, and more needs to be done to bring this into awareness.

Friday, May 14, 2010

So Much For Responsible Journalists

In researching the internet over this past week for new information regarding HPV and HPV research, I came across the equivalent of an "Ask Abbey" section in the Montreal Gazette written by Josey Vogels. The question and answer were framed under the heading of: Three in Four Sexually Active People Infected With HPV. The link is below:(

Anyone writing for public consumption including myself, has an obligation to research the information we provide and to be diligent in our research. It matters not the subject, whether the current oil spill in the Gulf of Mexico or HPV we owe it to those who read our words to convey accuracy and above all, the truth.

Ms. Vogels states that there is currently no vaccine available for men. I might have accepted that if it were not for the fact that this issue of the paper was dated May 12, 2010, only two days ago. If it had been written last summmer, the statement would have been true for the United States. The FDA only approved Gardasil for use in boys and men last September. Gardasil was approved in the US, by the European Commission and has been in use in Canada since 2006 for girls. But, on February 23rd of this year, Health Canada approved Gardasil for boys and men. A simple Google search would have revealed this information. Instead, many Canadians, as well as international readers such as myself, are being lead to believe there is no vaccine for males. There is and it is approved in Canada.

Why is this irresponsible, because a young man who may be interested in receiving the vaccine will think he cannot. Use in men is also limited to those under 27 as it is in women. Some physicians will provide the vaccine beyond the age limits imposed by the FDA and insurance companies although the patient typically must pay for this themselves. This is true for women as well.

Given the prevelence of HPV, something Ms. Vogels WAS aware of, being so lax in the dissemination of this misinformation is one of the problems, especially when the facts are so readily accessible. Shameful.

Saturday, May 1, 2010

It All Comes Down to Money...........

How are you? is I believe a misused and abused social greeting. It’s something we’ve all been conditioned to say when we encounter someone else. I’ve found that the majority of the time when people ask how you are or how you are doing, the truth is, they really don’t want to know. It’s simply something people are used to saying. Have you ever answered that question truthfully and found that the person who asked suddenly stops calling? This is especially true when you’ve dealt with cancer.

I watched a TV show several weeks ago. It was a documentary involving three women in their early 20's all of whom had developed an addiction to prescription pain medication. Two of the women lived in California and their parents sent their daughters to a 90-day rehabilitation facility complete with all the bells and whistles necessary to help them overcome their addiction. It turns out that both young women went to the same facility even though their parents did not know each other.

The third young woman was from Staten Island NY. She had no insurance and her mother was not in a position to send her to the same type of facility. The first time she received any intervention was the first time she overdosed and then she received two days in detox. The second time she overdosed she received three days in detox and the third time she overdosed she received two weeks of "intensive therapy" before being sent home. Within a month, she was dead. The fact is that two days, three days and two weeks respectively are not enough to address the issue of addiction.

It all comes down to money! So many people think that it comes down to whether or not you have health insurance. This really isn't true. I have excellent health insurance coverage but am not in a position financially to handle to co-payments required for the visits themselves. In January, I had to cancel my follow-up visit with the doctor who handled my chemo because they would not waive the co-pay and I didn't have the $50.

Right now I am supposed to be going back up to Duke University Medical Center for surgery. I found a pea-sized nodule within the sphincter at approximately the same place I'd found the lesion two years ago which turned out to be invasive. The surgeon also wants to perform additional biopsies. This surgeon is one, who is willing to waive the co-payment but there are other issues which people don't realize.

There are a group of individuals who own their own planes and who volunteer to take cancer patients for treatment. The name of the group is Angel Flights. It costs the patient nothing to fly and they can even bring along a companion. So while I am able to get there and the doctor is willing to waive the co-pay why would it still be a problem. Because I need to stay somewhere for the three days that I will be up there and need to eat during that time too.

No hospital will release a patient following surgery unless they have someone to take them home, or in my case back to the hotel. I certainly won't be in any shape to fly immediately following the surgery and this will require another night at the hotel and another days meals for my daughter and myself. It comes to a little over $200 but it may as well be $2000 when you don't have it.

While there are groups out there that will assist cancer patients, paying for a hotel and food isn't something they cover. So, while I have great insurance coverage, I still wont' be able to have the surgery I need because as I've said, it all comes down to money or to put it another way, the haves and the have nots.

One piece of information which I hope will be helpful to anyone in a similar situation with co-pays, doctor's offices ARE allowed to waive the co-pays if they choose to. Many will tell you, and I have had my share of adamant Office Manager's tell me, that it is illegal. It is NOT illegal!! While it cannot be done across the board, it is within the doctor's discretion to waive the co-pay for patient's whose financial situation are dire and who simply would be unable to keep the appointment otherwise. So, if any Office Manager or other office employee and even the doctor tells you this is illegal to do, call and get the documentation from the contract which the doctor signed with that insurance carrier and prove them wrong. If they still refuse to waive the co-pay at least you can address the real issue which is that they are unwilling to take less money to see you. Let's call a spade a spade.

Wednesday, April 28, 2010

What People Fail to Understand About Having Cancer

Obviously someone who has never been diagnosed with or gone through treatment for cancer can be empathetic and concerned for someone who has. Feeling empathy and actually understanding the feelings of someone with cancer is another story. Certainly someone with a friend or family member who has gone through treatment will have a greater understanding but still don't know everything. One of the hardest types of people to deal wtih are those who have had a family member with let's say breast cancer, and think they know everything about cancer as a result. Not everyone is going through breast cancer. Each type of cancer has it's own set of emotional fallout as well. A woman at age 30 may undergo premature menopause being treated for cervical cancer. A man being treated for prostate cancer may develop erectile dysfunction.

Going through treatment for cancer is not like being treated for pneumonia or a broken leg. You may be responding to that statement with a comment like, "Duh that's pretty obvious!" On its face it may seem very obvious but you'd be surprised how many people expect someone who has gone through treatment for cancer to recover just like someone who was treated for the prior two. What I mean by that is once an individual has completed their cancer treatment, others expect that it is behind them, they should "get on with things" or "get back to normal".

The treatment may be behind them, but the ramifications of that treatment can have effects occurring weeks, months and even years after its completion. Once you've had cancer I don't think you ever get back to "normal" at least not in the sense of what it was before your diagnosis and treatment. Normal takes on a whole new dimension and post-treatment normal can be drastically different than pre-treatment normal.

Many types of chemotherapy can cause side effects which can last for weeks or months before resolving. Other side effects can literally last - forever! Peripheral neuropathy caused by certain chemotherapy is a condition involving the nerves in the extremities. It can involve upper or lower extremities, or both. The symptoms can include the sensations of burning, tingling, stabbing, cramping and a myriad of others. It can make doing things you once did, difficult. The sensations can interfere with your sleep by waking you up during the night and the secondary side effect of insomnia or sleep deprivation presents its own difficulties.

Radiation therapy can permanently affect the bones. A DEXA scan(dual energy x-ray absorptiometry)is used to determine the BMD or bone mineral density. BMD which once was normal can turn to osteopenia (reduced BMD) or osteoporosis (severely reduced BMD). Bone pain and an increased risk of fractures from reduced BMD are another side effect which can occur long after treatment has ended. The long term effects of radiation are numerous depending upon which area of the body received the treatment and you can wake up months or years later with a symptom or condition you've never had before.

Radiation fatigue can last from weeks to years in some individuals. Imagine what it's like wanting to get up and engage in activities you once enjoyed only to find you dont' even have the energy to get out of bed. Most people don't know this and so look at you and act towards you as if you were some kind of malingerer. You can be asked questions like, "Why are you still having these issues when your treatment ended six months ago?" or "Other people I know who have had cancer haven't gone through this why are you?" The latter question only shows the person's ignorance.

Just as people have different reactions to medications so too can they have different reactions to their treatment. Perhaps the individual they were referring to didn't have radiation and only had chemotherapy. Perhaps the total dosage of radiation was different and/or the method of radiation delivery was different. The treatment plan developed to treat even the same type of cancer will not necessarily be the same between people having that same type of cancer. What people need to understand is that there is no cookie-cutter treatment for cancer and while protocols do exist they are but an outline for the physician to follow. Other pre-existing conditions which the patient may have must also be taken into account (eg. a heart condition).

Ongoing fatigue, pain and other side effects can lead to depression or exacerbate a depression which already exists. One of the things which is consistent amongst those having dealt with cancer regardless of the type is an ongoing fear of a recurrence. The degree of that fear may differ but I have yet to encounter a cancer survivor who has not been concerned on some level with a recurrence.

The type of treatment by others described above only serves to make the situation worse. It can lead to feelings of guilt for being unable to "carry their own weight" when doing chores or running errands as they once did. Feelings of disappointment at ones own inability to even enjoy activities they once did can be overwhelming. For me, one of the things that is difficult to deal with is the inability to even make plans for myself. Oh sure I can make them, but since I cannot predict just what "condition" I will be in when that day rolls around, I often have to cancel them. It's not unusual to become angry at the circumstances not to mention frustrated.

The best thing for the cancer survivor to do is to explain to others that while the treatment may be behind you its ramifications are not; that you are an individual, and that your side effects and how your body responds going forward may not be the same as their Aunt Martha or Cousin Larry. Explain also that this continues to be a trying time for you and that you would appreciate their consideration that you are doing the best you can on any given day. You cannot make promises to others, or to yourself, about where you will be in your recovery at a specific point in time. All you can do is take one day at a time. My mother used that phrase all the time and I grew to hate it. I've since come to realize the validity of those words for that is truly all we have.

Thursday, February 4, 2010

Getting On With Your Life (continued)

It's a tad difficult to get on with life when something such as walking presents a major obstacle.

One of the side effects/complications which can occur from chemotherapy is referred to as CIPN or Chemotherapy induced peripheral neuropathy. This can affect the lower arms and hands or lower legs and feet or both upper and lower extremities.

In my case, it affects my calves and feet. The majority of the time I cannot feel my feet other than the sensation that they are always cold. My calves themselves are painful. It ranges from intense cramp-like pain from the outside to an internal feeling that they are so tight they're going to burst.

The particular chemo which I was given did not have a tendency to cause this issue, but then shortly after starting the chemo I also developed pitting edema in both legs severe enough that an indent remained when pressing my finger against my leg. I also developed more severe side effects than usual according to the oncologist. I always had the 1 in 1,000 symptom or side effect - lucky me.

When simply putting your feet on the floor in the morning is painful it certainly doesn't make for a great start to any day. Medicatilons such as Lyrica or Neurontin which can be helpful with nerve pain were useless. Other pain medications were just as useless.

I find myself using a heating pad which does more to ahift the focus than actually solve the problem. I also sit in bed at night and massage my calves which feels good at the moment but provides no relief upon stopping.

I don't know how long I will suffer from this condition or if it will ever completely go away. In the meantime, this is something that those requiring the administration of chemotherapy to be aware of and bring any such symptoms to your doctors attention.