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Cervical Cancer

Real. Raw. Honest. NCCC's Cervical Cancer Survivor Videos Debut

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Filmed at the National Cervical Cancer Coalition conference in Atlanta, GA, in January 2013, these videos of stories from cervical cancer survivors and family members of women who have died from the disease highlight the devastating impact of cervical cancer. These personal stories also emphasize the importance of prevention in the form of vaccines and regular screening--prevention that can save lives.



Cell War Notebooks: Cervical Cancer and Letting Go

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"I'm not trying to boast (again) about all of the great friends and family I have. It's just time to let go of the Pain. It's time to teach my daughter the beauty and strength in surrender; it's time to show her the absolute courage it takes to fight with all the power you have and then realize the Pain is not going to stop until you give it the word…. And when the Pain is gone, I can hear endless belly laughs on the porch and pretty music in the far off distance.”

--Julie Forward DeMay

A hot fudge sundae. The soothing warmth of a masseuse working her fingers into your muscles. Hearing shrieks and laughter from your child. Cherishing friends and loved ones.

Knowing your mortality is at hand.

Julie Forward DeMay was 37 when she died from cervical cancer in August 2009. She kept a blog for the last seven months of her life that offers an unfettered look into living, dying, and loving. After Julie’s death, her family published a collection of her blogs, Cell War Notebooks, that will break your heart….but will mend it right back. Julie’s mother, Jane Forward, tells us more about her daughter, the book, and the lessons of the journey.  Cell War Notebooks is available at Amazon. Learn more on the Cell War Notebooks Facebook page.


Sarina Kaye Interview

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Sarina KayeThe National Cervical Cancer Coalition is a grass-roots nonprofit serving women with (or at risk) for cervical cancer and other HPV-related diseases. NCCC merged with ASHA in late 2011. As we approach the first anniversary of the merger we were honored to speak with NCCC’s former Executive Director, Sarina Kaye. Under Ms. Kaye’s leadership, NCCC evolved into an international organization with chapters and members across the globe. She is married to Alan Kaye, NCCC’s co-founder.HPV News: Tell us a bit about how you became involved in NCCC, what led you to education and advocacy around cervical cancer.

HPV News: Tell us a bit about how you became involved in NCCC, what led you to education and advocacy around cervical cancer?
SK: I became involved with the NCCC because I tested positive for a high-risk type of HPV and underwent multiple procedures, which were emotional, to clear it out.

This was before HPV testing was routine. Alan and I had been dating for a period of time when I became due for my Pap Test. I was not always following through on getting my Pap test exactly as I should have. As a single mom, I was busy working full-time and raising my three children. Alan kept after me to follow up on my routine Pap Test. When I did make the appointment and go in, Alan then encouraged me to ask my OB/GYN to order The HPV Test, as I was in the age group the anticipated guidelines were going to focus in on for routine HPV co-testing with a Pap Test. I was reluctant to ask my doctor for this new test. However, Alan had lost his wife, Randi, to cancer and I felt I should at least follow through on this request he had. My OB/GYN then reluctantly agreed to order the test. When the results came back, my doctor did not know what to do with positive HPV Test information and a normal Pap test result. In fact, when I asked my doctor’s office what to do, they told me not to worry about it and that I did not need to do any follow-up testing!

On my behalf, Alan spoke with Juan Felix, MD about what the doctor said. After Alan spoke with Dr. Felix, I was encouraged to seek out a clinician with HPV expertise. I found a Gynecologic Oncologist recommended by Dr. Felix at the University of Southern California (USC) Norton Keck Cancer Center. At the time, I thought Alan & Dr. Felix were over-reacting. I went to the gynecologic oncologist, Lila Mudersbach, MD, an amazing doctor, who performed a colposcopy and found multiple CIN2/3 lesions on my cervix. I had two LEEP procedures, followed by some recurring related issues and treatments for the next several years.

If Alan had not encouraged me to get my routine Pap Test and then to ask to have the HPV Test, and after that, talk with Dr. Felix, I would not have had another Pap Test for 12-18 months. Based on the multiple persistent HPV types I had, and everything I have read, I feel there was a strong likelihood my persistent HPV types I had certainly could have become cancer before my next Pap Test/Pelvic exam.

Which are the NCCC accomplishment/accomplishments of which you’re most proud?
I'm most proud of the Chapter Leader Program. Many of these woman (and a guy or two as well!) are battling serious health issues, or they are supporting a friend or family member, sometimes after the loved one has been lost. They dedicate their time and energy to spreading the word and trying to make sure others don't have to deal with Cervical Cancer or persistent HPV. These Chapter Leaders are some of the strongest, most caring, selfless people I have ever met. They are so passionate about helping others and trying to get the word out about prevention and early detection. They have been role models and inspiration to me and I feel blessed to have been part of starting this program.

Help us to understand what it’s like to be diagnosed with HPV or a related condition. What goes through a woman’s mind? What questions does she most need to answer?
This is of course different for everyone but what I heard from many women (and what I felt when diagnosed) was mainly fear and embarrassment. Some women also feel angry and victimized. HPV is sexually transmitted so in some ways you feel dirty and responsible, like you've done something wrong or got what you deserved. We try and reassure women how common HPV is and how it is transmitted without anyone knowing they have it, in most cases. There is fear about getting rid of the virus, if it will be with you forever, and if you should tell people you have been with sexually. You feel differently about your body and your sexuality. Many scary, unknown feelings and still a lot of stigma associated with it. I think it is better now, though; the vaccine commercials raised awareness and started a conversation on the subject, which is a good thing. I think as more cancers are linked to HPV the stigma will continue to fade.

Recently updated cervical cancer screening guidelines extend screening intervals for most women from 3-5 years. The data is clear that screening more often isn’t usually necessary, but many women and health care providers are nervous about having this much time between Paps and HPV tests. How would you talk to women and their health professionals about this?
As you know I'm not a big fan of this guideline. I just worry about going so long! I think the most important thing is women (and men for that matter) need to talk to their healthcare professionals, and together they can determine what the best approach is for them. You should have a healthcare professional who does not judge or make you feel shame (which occurs sometimes, especially across different cultures). My message would be open communication and discussion about individual circumstances to guide your treatment. Also, regular well-woman and other preventative exams should continue annually.

You (and Alan, too) worked tirelessly for years with NCCC and your imprint will forever be on this organization. Given the commitment and sacrifices you made to NCCC and this advocacy work, is it somewhat bittersweet not to be involved in daily operations? Are you going to work in this area of cervical cancer support again?
It is bittersweet but I feel fortunate to have had the opportunity to give my time and energy to the NCCC. It gave me an optimistic view of people in what can be a very negative and cynical society. I feel like I've abandoned the cause a bit but I know the NCCC is in good hands with an organization that can provide the needed outreach and support. I think most of us only meet a handful of very special people who have a profound impact on their lives. The work I did at the NCCC allowed me to meet so many very special, strong, caring, people who have impacted my outlook and my attitude.

I have a picture of Janet Wagner on my desk who died April 25, 2010 from cervical cancer. [Janet Wagner was an NCCC Chapter Leader in Houston.] It would have been her birthday this October 27th - we were the same age and she fought so hard and had the most amazing attitude up until the very end of her life. I have this picture of her because her smile reminds me of her strength and courage and compassion and dedication to helping others. She just was hoping that the work she and the NCCC did would prevent other women from dying and fighting this disease. She was dying and that was one of her big concerns. I am very lucky to have known this woman and others like her. Many have died with this disease, but plenty are survivors who continue to spread information and knowledge, and provide support to those in the midst of their battle just because they want to help others. It gives me a lot of hope for our world to know there are so many special people and makes me so grateful to have been a part of something so good.


The Semi Scandalous Story of an Ex-Virgin: A Chat with Danielle Sepulveres

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“I have already lain on a table with my lady business spread for the world to see with liquid nitrogen being shot up into it, how in the hell could it possibly get any worse. A year ago I would have told you liquid nitrogen is what they use to make the atomic bomb.”

At the age of 23 Danielle Sepulveres was diagnosed with cervical pre-cancer and began what she calls “Three years of fear, love, loss and a lot of therapy.” In her book Losing It: The Semi-Scandalous Story of an Ex-Virgin, she uses a light touch to chronicle her “coming of age story” that involved grappling with clinic visits, relationships, and self-esteem while navigating a still unfamiliar adult world.

Walk through a timeline of your diagnosis and treatments.
At age 23 I went for my first Pap after becoming sexually active and it came back as abnormal. The clinic said they weren’t sure if maybe the test was misread so I should come in for another one, which I did about a month later: it was abnormal again.

So I had a colposcopy and biopsy and they said things looked ok, they wouldn’t need to do anything except watch me closely. A subsequent Pap a couple of months later still showed abnormal cells that looked suggestive of high-risk HPV. The cell changes were treated with cryotherapy [freezing the cervix with liquid nitrogen], and after yet another Pap was abnormal I had a second round of treatment.

A few months later we checked again, the results were still irregular, so we scheduled the LEEP [Loop electrosurgical excision procedure, using a thin wire to remove cervical tissue]. All this spanned nearly two years from when I was first diagnosed to the follow-ups after the LEEP when they told me everything is clear, there’s no more recurrence of the abnormal cervical cells. Everything has remained clear, and now I’m back to going for exams just once a year, which is kind of a nice change!

Had you ever heard of HPV?
Almost in passing when HPV was mentioned during a course in college it was described as the most common STD, yet no one in the class had even heard of it!

Years later when I was getting rid of stuff in a storage unit I found my old college notebooks and I remember seeing that notes I had taken in that class: HPV is common, men aren’t tested for it, almost 3 out of 4 women can expect to have it at some point. I thought how funny now that I know all this and back then I didn’t pay much attention.

How worried were you about developing cervical cancer?
My doctor made me feel like things were manageable. He told me that HPV and abnormal Paps are common and my condition was something we can deal with. I was worried, though: my thought was if I have precancers at age 23, does the fact it’s showing up this early suggest there’s something genetic that means I’m really at risk?

Talk about the experience of the colposcopy and biopsy.
I tell women it’s like your regular exam to the extreme: colposcopy/biopsy takes longer and hurts more. It’s really awkward because they are looking at things under a microscope, and with me they used a dye. There were medical students observing, so my doctor was explaining to them what was going on!

They’re also saying things like “Ok you see that? Yep, that might be it” and I’m thinking “Great, what do you see?” Also with a regular exam you’re in and out, it’s over quickly with few if any after effects. With a biopsy a woman might have a surgical tampon or need to wear a sanitary napkin for a day or two afterwards.

What about cryotherapy?
It’s not too bad, for me there was some cramping and nausea, but nothing terrible. You have to take it easy afterwards, definitely won’t feel like going to the gym for a while. I took some ibuprofen before the treatment and that helped.

How about the LEEP?
The LEEP wasn’t bad at all; you get the local anesthetic so you don’t really feel anything during the procedure. Once you get home there might be some cramping and nausea, just feeling uncomfortable, similar to what I felt after cryotherapy. It was hard for me to get into a comfortable position when I was trying to sleep. It just takes a few hours for your body to calm and settle down.

What should health care providers know when talking with women diagnosed with HPV and cervical precancers?

I was lucky, my doctor was really good to me, but they have to be careful and pick and choose exactly what to say. The biggest thing that alarmed me was being told they don’t like to do [LEEP] to women my age because of concerns about future pregnancy, such as premature delivery. Partly because I was so young, I heard the worst-case scenario “You’re not having kids” even though that’s not what he said! When talking about treatment options with women of child-bearing years, the issue of pregnancy and carrying to term has to be handled the most delicately of all of it. Perhaps acknowledge the potential for complications but adding that problems aren’t extremely common and we’re every good at monitoring to make sure premature delivery doesn’t happen.

Talk about the emotions that go along with all this.
The emotional part for me was just feeling alone. No one should feel isolated, so it’s important to talk to your friends and family. If you have a significant other it’s ok to talk to them, too, and it’s not unusual if they feel confused and unsure. You can get through it together and everything you both feel, all the emotions, is probably normal even if you think it’s not. It seems like I had every single emotion multiplied by five!

It’s not always easy to talk about HPV, cervical cancer, and “lady business”! Why did you write this book?
It was therapeutic for me. The relationship I was in at that time was souring and I felt the need to hang onto it because of what was happening to me medically, like I need somebody around for this even though it was unhealthy in many respects. I dealt with the medical issues and the relationship at the same time, so it was a big full circle.

I was hesitant to talk about things, so the book came about because I was writing things down when I didn’t know who to talk to!

Ms. Sepulveres, who lives in New York, works in television and film and currently is involved in production of the show The Good Wife.


Cancer Statistics 2012

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The number of estimated cases of cervical cancer in the U.S. is holding fairly steady but data from the American Cancer Society in their journal CA: A Cancer Journal for Clinicians indicates sharp racial disparities exist in both number of new cases and survival rates.

ACS estimates there are 12,710 new cases of cervical cancer in the U.S. each year, resulting in approximately 4,300 deaths. In their report, Cancer Statistics, 2012, the Society indicates the disease most often strikes women between the ages of 40-49 years; 1 woman in 373 in this age group develops cervical cancer. Overall, about 1 woman out of every 147 will expect to develop cervical cancer at some point in their lives.

One of the vexing issues is the disproportionate impact of the disease within communities of color. While the rate of the disease among white women is 7.7 per 100,000, the rate among African-Americans and Hispanics per 100,000 is 10.6 and 12.2, respectively. Native American women also have elevated rates at 9.8 per 100,000. Among Asian women the rate is 7.4.

The numbers are also troubling when looking at death rates, with African-American women twice as likely to die from a cervical cancer diagnosis as white women. Mortality among Hispanic and Native American women is also higher compared to white women. Public health experts believe the discrepancies are largely due to social factors that include a lack of access to health care.

Rebecca Siegel, Deepa Naishadham, Ahmedin Jemal. Cancer Statistics, 2012.CA CANCER J CLIN 2012;62:10–29. Available online.