Cervical Cancer - it is not about blame and shame

NoTimeForCancer

Ladies, I wanted to share this with you.  I am blessed to know both Karen and Tranette.  

Women with HPV-related cancers say that education is the answer.

By Karen Bate

When Tranette Ledford’s doctor said the dreaded words, “You have cervical cancer,” the writer from San Antonio, Texas, was understandably shocked and scared. When she got home, she told a professional colleague and friend who was visiting.

“Oh, wow, I wonder who gave it to you” was the friend’s immediate response.

In that moment Tranette realized that in addition to shock and fear, she also had to contend with the idea that even among well-educated people this particular diagnosis included an unhealthy dose of shame.

“I was appalled,” Tranette says. “I decided then that I would be very careful about whom I told and what I said. Cervical cancer is caused by HPV [human papillomavirus], which is transmitted sexually. I realized there were misconceptions and that blame for my illness would fall on me. So I went through chemo and 28 weeks of radiation treatment silently and pretty much alone.”

Tranette has decided to be silent no more.

HPV is as ubiquitous as the common cold. The Centers for Disease Control and Prevention (CDC) reports that almost all sexually active people will acquire HPV at some point in their lives. The CDC estimates that 79 million Americans are currently infected with HPV. Individuals can have the virus for years without knowing they have been infected or that they have passed it on to someone else.

“While most women and men will be exposed to HPV sometime in their life, few develop any sort of clinically relevant disease as a result of this common infection,” points out Mark Einstein, MD, MS, director of clinical research of women’s health and gynecologic oncology and a professor of obstetrics and gynecology and women’s health at Einstein and Montefiore Medical Center in New York City. And, he adds, “If most people are infected with HPV, why should any one per­son feel ashamed?”

Unfortunately, as countless news accounts continue to reveal, harm­ful sexist attitudes toward women endure. Tranette tweeted recently in support of clinics that provide women’s cancer screenings in Tex­as, and a man she didn’t know re­plied, “Maybe if women didn’t sleep around they wouldn’t get cancer.”

“The general public needs to be educated about HPV and cancer and end the shaming of the more than 20,000 women who develop cervical, vaginal, and vulvar cancer annually,” Tranette says, “and the men and women who develop anal and throat cancers, which can also be caused by HPV.”

She adds, “It doesn’t matter how you got it, whether you are married or single. It’s not about sex. The im­plication that HPV-related cancers are punishment for being ‘bad’ re­calls the similar, early response to AIDS in the 1980s.”

Mildred R. Chernofsky, MD, is a gynecologic oncologist at the Sibley Center for Gynecologic Oncology and Advanced Pelvic Surgery and an associate professor of obstetrics and gynecology at the George Washing­ton University School of Medicine, both in Washington, DC. She tries to demystify the causes of HPV-re­lated cancers with her patients. “We should all embrace that any form of sexual activity has risk of HPV,” she points out, “and also accept that sex is a natural part of life.”

It is realistic to assume that each sexual partner increases an indi­vidual’s chances of HPV exposure, yet Dr. Chernofsky has also had patients with just one sexual part­ner. In fact, when a couple becomes monogamous, HPV can become sup­pressed in both partners and can be triggered later by childbirth, an ill­ness, or stress related to the death of a loved one or any number of life events.

The vast majority of cervical can­cer diagnoses are in women who have never seen a gynecologist (50 percent) or have not seen one in more than five years (40 percent). Only 10 percent are diagnosed in women who get regular gynecologic care.

“Thus the message is for women to get regular checkups and co-test­ing with the Pap [Papanicolaou] and HPV tests for women 30 and over ev­ery five years,” Dr. Chernofsky says. “Girls and boys ages 9 to 11 should get the HPV vaccine, as well as men and women up to age 26. The vaccine has greater efficacy when received at an early age when sexual activity has not yet begun, but there is still some benefit in people up to age 26, even if sexual activity has started. Condom use can greatly reduce exposure as well, by providing at least partial protection.”

According to the American Can­cer Society, about 12,360 new cases of cervical cancer were diagnosed in 2014 in the United States; 4,020 women died.

Latinas have the highest rates of cervical cancer of all groups of women. Lack of screening is an im­portant factor behind this disparity. Latinas are also more likely to die from cervical cancer than are non- Hispanic Whites.

While cervical cancer incidence is highest among Latina women, Af­rican-American women have lower five-year survival rates and higher death rates from the disease.

“When I was diagnosed in 2001, HPV and cervical cancer weren’t in the news as they are now,” says Tamika Felder, a television producer and founder of Tamika & Friends, a nonprofit organization working to prevent cervical cancer through patient education and survivor em­powerment. “I felt all alone and embarrassed,” Tamika says, “until I started educating myself about HPV and its link to cervical cancer. During this time my friends were doing research, too. We needed to do something; we had to let people know. Out of this Tamika & Friends was born.”

In 2013 Tamika & Friends launched Cervivor, an educational support community that includes Cervivor School, Cervivor TV, and the website cervivor.org.

Symptoms of cervical cancer generally do not show up until the cancer is quite advanced. According to the Chicago-based Foundation for Women’s Cancer, many women report that they know something is wrong, but it sometimes takes persistence and multiple trips to the doctor before they are finally diagnosed.

Dena Whatley, a vulvar cancer survivor from Norwich, Connecticut, is a case in point. “I had a rash on my labia that was misdiagnosed by several doctors,” she says. “One doctor told me it was a birthmark, others that it was due to an allergy or yeast infection—all false. I was finally correctly diagnosed, but because of this delay I have now had three surgeries and recurrences and continue to fight this disease.”

Dena felt ashamed that the cancer was likely caused by HPV: “After I was diagnosed in 2009, I put on a mask, smiled, and hid behind that for a long time. Last year I finally shared my story with other women and discovered I am not alone, that there are others and that I could help them.”

While searching the Internet for information, Dena found the Foundation for Women’s Cancer, a nonprofit that provides educational resources and research grants and raises awareness about all gynecologic cancers. She formed a team for the foundation’s annual National Race to End Women’s Cancer in Washington, DC, and held several fundraisers to raise awareness and support at the hospital where she works.

“Other women need to know this organization is out there,” Dena says. “Gynecology and gynecologic oncology offices need to share information about the website [foundationforwomenscancer.org], support groups, anything that can provide patients with support. This information should be included in the appointment. I so wish it didn’t take me almost five years to find the foundation!”

Tranette Ledford agrees. “People hear ‘cervix,’ ‘vagina,’ or ‘vulva’ and want to cover their ears,” she says. “But it begins with us. We must be unashamed and help overcome this—just like they did with breast cancer 30 years ago—so that we too can win the awareness war. This is about our mothers, sisters, wives, daughters, and friends. It’s time to break the silence, come together, and demand more research funding and refined treatments. Our death rate is just too high to ignore.”

FightingSpirit

Shame is real

I was diagnosed with non-HPV related cervical cancer and felt compelled to always add that qualifier if I told anyone about my diagnosis.  After being told it wasn't possible, I went on a search for possible causes.  My Gyn/Onc's "just bad luck" explanation didn't work for me.  In my search, I found out about DES.  

DES is a drug that was given to pregnant women from the 1950's through the 1970's.  It was originally given as a prescription and later used in prenatal vitamins, so it is almost impossible to rule out exposure in the womb.  Research has shown an increased risk of several major diseases (including breast and cervical cancers) for women exposed to DES in the womb. If interested, here is an article from NIH with the stats:  http://www.nih.gov/news/health/oct2011/nci-05.htm

I find it interesting that we don't hear more about something other than the "shameful" cause of cervical cancer.  I've even heard it referred to as the dirty woman's cancer.  This needs to stop.  The stigma associated with cervical issues may prevent women seeking medical help sooner.  I agree with you.  It is time to shed some light on how common HPV is and that it has nothing to do with a woman's hygiene.  BTW...if we get it from men, wouldn't that make men "dirty" as well?  Sigh.  The old double standard rears it's ugly head again.

SMD15

FightingSpirit said:

Shame is real

I was diagnosed with non-HPV related cervical cancer and felt compelled to always add that qualifier if I told anyone about my diagnosis.  After being told it wasn't possible, I went on a search for possible causes.  My Gyn/Onc's "just bad luck" explanation didn't work for me.  In my search, I found out about DES.  

DES is a drug that was given to pregnant women from the 1950's through the 1970's.  It was originally given as a prescription and later used in prenatal vitamins, so it is almost impossible to rule out exposure in the womb.  Research has shown an increased risk of several major diseases (including breast and cervical cancers) for women exposed to DES in the womb. If interested, here is an article from NIH with the stats:  http://www.nih.gov/news/health/oct2011/nci-05.htm

I find it interesting that we don't hear more about something other than the "shameful" cause of cervical cancer.  I've even heard it referred to as the dirty woman's cancer.  This needs to stop.  The stigma associated with cervical issues may prevent women seeking medical help sooner.  I agree with you.  It is time to shed some light on how common HPV is and that it has nothing to do with a woman's hygiene.  BTW...if we get it from men, wouldn't that make men "dirty" as well?  Sigh.  The old double standard rears it's ugly head again.

Happy to have found this thread

On 3/26 after a colonoscopy, anal cancer was found.  The pathology report became 'official' in early April.  Decided I had better go get that pap smear done, since we know what the cause of anal cancer is. This is quite a long story involving a abnormal pap found in 2007 followed up by a colpo.  Rx was wait and see.  I waited alright, until a few weeks ago. 

Anyway fast forward to today:

Nurse just called, another abnormal pap, needs to be followed up with a colpo.  Decided to schedule that for two weeks after my surgery next week, for the end of May.  I can't say I am surprised, but boy oh boy when it rains it pours.  I realize that an abnormal pap in no way means I have cervical cancer, but I cannot help but wonder since I have the rare anal cancer. 

As far as feeling dirty, yeah you betcha.  I don't like this feeling at all. 

NoTimeForCancer

SMD15 said:

Happy to have found this thread

On 3/26 after a colonoscopy, anal cancer was found.  The pathology report became 'official' in early April.  Decided I had better go get that pap smear done, since we know what the cause of anal cancer is. This is quite a long story involving a abnormal pap found in 2007 followed up by a colpo.  Rx was wait and see.  I waited alright, until a few weeks ago. 

Anyway fast forward to today:

Nurse just called, another abnormal pap, needs to be followed up with a colpo.  Decided to schedule that for two weeks after my surgery next week, for the end of May.  I can't say I am surprised, but boy oh boy when it rains it pours.  I realize that an abnormal pap in no way means I have cervical cancer, but I cannot help but wonder since I have the rare anal cancer. 

As far as feeling dirty, yeah you betcha.  I don't like this feeling at all. 

Oh SMD, I am sorry to hear

Oh SMD, I am sorry to hear this.  Certainly if people don't want to talk about gynecolgoical cancers, anal or rectal cancer would be right up there as well.  I'm sorry.

I hope your cancer was found early and treatment cures you.  It is scary and hope the other chat board on this site can help you too.

SMD15

NoTimeForCancer said:

Oh SMD, I am sorry to hear

Oh SMD, I am sorry to hear this.  Certainly if people don't want to talk about gynecolgoical cancers, anal or rectal cancer would be right up there as well.  I'm sorry.

I hope your cancer was found early and treatment cures you.  It is scary and hope the other chat board on this site can help you too.

Hello

Thank you so much for your kind words.  I was just starting to get my mind right about the procedure next week for the anal cancer.  Gah, now a colpo after that.  Two in one month is a bit much for me. 

Thanks again NoTime.  I appreciate it. 

Toast

SMD15 said:

Hello

Thank you so much for your kind words.  I was just starting to get my mind right about the procedure next week for the anal cancer.  Gah, now a colpo after that.  Two in one month is a bit much for me. 

Thanks again NoTime.  I appreciate it. 

Thinking about you!

Hey SMD15 - just want to tell you that we are here for you!!!  I totally understand what you are saying and hope someday ladies like us won't be anything except nurtured with compassion. 

Toast

Thanks!

No time for Cancer: I am glad you posted this. 

SMD15

Toast said:

Thinking about you!

Hey SMD15 - just want to tell you that we are here for you!!!  I totally understand what you are saying and hope someday ladies like us won't be anything except nurtured with compassion. 

Thanks Toast!

Thank you so much for your kind words.  You feel it, you know.  It's hard to describe that look and/or tone of voice when discussing with anyone and it's definitely not paranoia.  Yes someday, hopefully we can look forward to that compassion.  I guess it's not as bad as it must have been in the not too distant past.  I haven't even been totally honest about this with my own mother.  *shudders*

A side note.  I love your user name.  It makes me smile.  'Toast' was my (now 34 year old) son's term of endearment when he was two years old.  If he called you 'toast' you were something special. 

 

 

Toast

SMD15 said:

Thanks Toast!

Thank you so much for your kind words.  You feel it, you know.  It's hard to describe that look and/or tone of voice when discussing with anyone and it's definitely not paranoia.  Yes someday, hopefully we can look forward to that compassion.  I guess it's not as bad as it must have been in the not too distant past.  I haven't even been totally honest about this with my own mother.  *shudders*

A side note.  I love your user name.  It makes me smile.  'Toast' was my (now 34 year old) son's term of endearment when he was two years old.  If he called you 'toast' you were something special. 

 

 

I have to tell you that I tried being totally honest with my mother.  I gave up because she just couldn't undertand what a vulva is..................she didn't know she had one............

It makes me laugh!

SMD15

Toast said:

I have to tell you that I tried being totally honest with my mother.  I gave up because she just couldn't undertand what a vulva is..................she didn't know she had one............

It makes me laugh!

Made my day Toast!

I almost snorted. You absolutely made my day. A sense of humor is a must when dealing with this subject. 

Toast

SMD15 said:

Made my day Toast!

I almost snorted. You absolutely made my day. A sense of humor is a must when dealing with this subject. 

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