Aisha was first diagnosed with cervical cancer around 8 years ago when she was 32 years old. Her three children, to whom she is a single parent, were all under the age of 10. At the time, she did not have health insurance. She was experiencing bleeding after sex, a common symptom of cervical cancer, and went to the Health Department to get checked. 

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“You probably have some sort of STI,” they told her without screening, “so we're going to give you some antibiotics and it'll clear it up.” 

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Hesitant, she began the course of antibiotics but felt her body worsening. 

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“I started noticing other things that felt off. I was really tired, and my friends said I looked a little gray. My energy levels were low, and my back was hurting.” 

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Aisha knew there was something more going on.

She went back to the Health Department. Once again, they sent her home without an examination, telling her she had to wait until her antibiotics had run their course. Seeing no improvement, on her third visit to the Health Department she insisted she needed to be examined. Finally, a provider conducted an exam and found what Aisha had suspected. 

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“Your cervix looks angry. I can't diagnose you with anything, but I definitely see something that could be a mass. You'll want to get a biopsy, but we can’t biopsy here. So, you're going to have to find somebody to give you a biopsy.”

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She left the Health Department with nothing more than the knowledge that she might have cancer, without any resources to navigate how to obtain a biopsy. She spent the next days calling nearby clinics until she found a doctor who would conduct a biopsy as an out-of-pocket procedure, as she did not have health insurance. At age 32, Aisha was diagnosed with stage 2b cervical cancer. 

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Aisha should have never developed cervical cancer.

She was up-to-date on her screenings, knowing that she had a history of abnormal results and colposcopies. Still, she fell through the cracks because her providers were not testing her for high-risk Human Papillomavirus (hrHPV), which causes almost all cervical cancers. 

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“They missed it because (the tumor) was towards the back, and they didn't get back far enough. They just did a Pap so they didn’t catch HPV.” 

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Just 9 months before she was diagnosed, Aisha had a Pap Smear, which is a cytology test where cervical cells are visually analyzed under a microscope for cancerous cell changes. However, Pap Smears alone do not test for the presence of hrHPV that causes cervical cancer and are far less sensitive than HPV tests. On the other hand, HPV tests look for the presence of high-risk HPV and are highly sensitive, which means they almost always find disease when it is present. 

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In FDA clinical trials, Pap smears, or cytology, have a sensitivity of around 53% for detecting abnormal cell changes (i.e., CIN3+). This means they miss almost half of all cases where cancerous abnormalities exist, which is why they were recommended annually. HPV tests are far more sensitive. In FDA clinical trials, Primary HPV tests show 92% sensitivity, at least, when detecting abnormal cell changes (i.e., CIN3+).

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Aisha’s treatment began immediately. Six rounds of chemotherapy, 25 rounds of radiation, and 5 rounds of brachytherapy (internal radiation). She describes feeling very unprepared and uninformed about what her treatment would entail and didn’t have time to ask questions. For example, it was not explained that the radiation regime she was signing onto would mean that she would lose her fertility, and she was not given options to preserve her fertility. 

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“Pretty immediately, I went into early menopause at age 32. It wasn't explained to me that was going to happen. I was frustrated by that. Maybe they assumed that I had 3 children, so I didn’t want to have another kid. But I wasn’t necessarily ruling that out. I thought maybe I would have one more, one day.” 

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Fertility preservation is a common challenge for women undergoing cervical cancer treatment that includes radiation. Most women are diagnosed young – cervical cancer is most frequently diagnosed in women aged 35 to 44 years – and may want treatments that include options for future family-building. 

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After her treatment, which she was told went well, Aisha was asked to return for a follow-up in three months. She thought she had beaten the cancer and was looking forward to moving on. But, the news was far from what she expected.

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 “It’s just that you’re so young,” the resident doctor told Aisha. 

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“Your cancer has spread to your lungs and liver. It’s metastasized now. I can't promise you any more than two years right now. And if you don't get treatment, you're looking at maybe three months.”

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The doctor described that two years of treatment would be incredibly challenging, and asked her to instead consider three “good months” with her children. Aisha recalls spending the next few hours crying beside an oncology nurse, fixated on who would take care of her children if the worst were to happen. But, as she made her way to school pick-up after receiving this devastating news, her attitude shifted as soon as she saw her children – Aisha decided to fight. 

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Aisha now had health insurance and had started working at a hospital-affiliated institution. She emailed every oncologist requesting a second opinion. Finally, one oncologist (who remains a doctor she relies on) gave her more options. This oncologist believed that Aisha, being young, could tolerate aggressive treatment – and being a mother who was desperate to live, deserved that chance to try. 

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“That's all I needed to hear. The same diagnosis, same finding, same everything, but just, ‘let's try.’”  

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This time, Aisha took the time she needed to do her research and ask questions.

After three months, she began her second treatment to address metastatic cervical cancer. She points out that according to her first doctor, she should not have been alive, but here she was, persevering. 

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She underwent chemotherapy requiring her to be hospitalized overnight each time, due to anaphylactic shock (a side effect, as she built a tolerance to the medication). When she was discharged at 8AM, she would take her children to school and bring herself to work, all while enduring treatment. She did her best to keep herself healthy and maintain a smooth life for her children, protecting them from the weight of her diagnosis. 

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“I had a very traumatic childhood, so my goal has always been to make my kids' lives as easy and trauma-free as possible. So, I faked it. I kept doing all the usual things. I was exhausted. I was sick. But I wanted to create a sense of normalcy for my children. And I feel by doing that, I was saving myself in the meantime.” 

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In July 2017, Aisha completed her chemotherapy and went into the clinic to undergo scans in preparation for CyberKnife treatment (highly targeted radiation) for the small amount of cancer that the doctor thought remained in her lungs. Again, her doctor had unexpected news.

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“I've been doing these 25 years,” her oncologist said, “And I've never in my life seen this, but you had a complete response to treatment. What we saw on your scan was just calcified tissue, it’s not even an active disease.” 

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Against all odds, Aisha has been in remission since August 2017. Now, looking back at her earlier scans, Aisha knows that her cancer was metastatic from the very beginning. Her first scan after being diagnosed showed spots on her lungs with notes indicating, “Cannot rule out metastatic disease.” Aisha describes feeling betrayed at many points, from being screened with only a Pap Smear despite her HPV history, to being treated with antibiotics and denied examinations, losing her fertility, and being dismissed when she wanted to fight. 

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Today, Aisha knows that she needs to ask for what she wants in her healthcare, and encourages others to do the same. She believes in the power of patient self-advocacy and uses her experience to help others. 

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“If you feel dismissed, if you feel uneasy, or if a symptom is persistent and you don't feel comfortable with the outcome, then you keep going back until you feel comfortable. [...] Keep being a squeaky wheel. [...] I saved my life by being a squeaky wheel.”

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Not only does she emphasize the importance of getting screened routinely to enable diagnoses and treatment as early as possible, but she is also a proud and vocal advocate against the stigma around HPV. 

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“HPV is something that can affect anybody who's ever had sex in life, ever! Why are we not talking about it? It (leads to) the only cancer that can be eradicated.”

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“Don’t be afraid to talk about (cervical cancer) because there are so many people who have had to navigate this. So many people have had HPV. So many people have had abnormal Pap smears. I need people to understand, it's so much more common than they think it is. And outcomes for cervical cancer are improving every day.”

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We couldn’t agree more. With January being Cervical Cancer Awareness Month, we urge you to schedule your routine screening if you have not already. Cervical cancer can be prevented (and eliminated), but it takes everyone screening routinely so that persistent HPV infections can be identified and treated before they progress into cancer. If you would like to learn more about HPV and the risks around cervical cancer, check out Teal’s resource center for more blogs and research deep dives. 

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Thank you, Aisha, for telling us your inspiring cervical cancer survivor story. We are incredibly grateful to be able to share your experience with our Teal community.

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