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Home Cervical Cancer Cervical Cancer Sarina Kaye Interview

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.