Ana Reyes was just 37 years old when she was diagnosed with stage 2 cervical cancer, setting her on a three-year journey of surgeries, chemotherapy and painful radiation that has left her body permanently damaged and scarred.
It didn't have to happen, the Palo Alto teachers' mentor and mother of two says: A vaccine can prevent the virus that is at the root of most cervical cancers. As hard as Reyes fought her cancer, she is now fighting to get people to understand this fact.
Some forms of the human papillomavirus, or HPV, cause cancer, according to the American Cancer Society. And the number of people who are infected with HPV is staggering. About 9 in 10 will get an HPV infection at some point in their lives, according to the U.S. Centers for Disease Control. Some strains of HPV cause genital warts, which don't cause cervical cancer, but an estimated 15 strains can lead to cervical, oral and anal cancers, according the National Institutes of Health.
Although known as a sexually transmitted disease, sex doesn't have to occur for the infection to spread, according to the American Cancer Society. Intimate skin-to-skin contact with an area of the body infected with HPV can spread the disease.
In many cases, HPV infection can clear a person's body on its own within a relatively short period of time: 90 percent can disappear within two years. But the virus also can remain dormant for years before a person develops symptoms, making it hard to know that one is infected.
Reyes didn't know she had HPV. The diagnosis had remained in her medical record for years, but no health care provider had ever mentioned it. Although she had abnormal Pap smears for nine years, she was always told it was just something to watch.
When she began experiencing abnormal bleeding, she thought it was from her intra-uterine device, or IUD, she said. A gynecologist other than the doctor she normally saw noted the HPV diagnosis and decided to sample tissue from higher up in her cervix than is normal for Pap-smear tests. Most Pap smears catch a cancer early if a woman has the test regularly.
If the doctor hadn't tested higher in her cervix, it is likely the cancer would have grown and possibly metastasized, Reyes said. She was diagnosed in December 2015 with stage 2 adenocarcinoma, a rarer form of the disease, she said.
"When I found out, it was unbelievable to me. I had no idea what the statistics were for prognosis or what was the treatment," she said.
Reyes, a Palo Alto High School graduate, coaches and mentors teachers who are in their first or second year of education and who strive to receive tenure. Before that, she taught special education for 17 years, including 10 years in the Palo Alto Unified School District.
When she was diagnosed, her children were 6 and 8 years old. A single mother, she said that her determination to be there for their futures helped her through the darkest hours of her treatments — a surreal world of mind-bending pain and multiple surgeries.
"It was totally crazy," she said.
Once a week for six weeks, Reyes arrived at Kaiser Permanente Hospital in Santa Clara for the six- to seven-hour chemotherapy treatment. Like ghostly specters, nurses arrived in masks and caps, booties and gowns, their hands protected by nitrile gloves pushing the chemicals into a line that fed into her veins.
Next came 28 rounds of external radiation administered five days a week. On her body, three permanent tattoos mark the spots where doctors targeted the tumor. But if those treatments were trying, Reyes could not have been prepared for the three rounds of internal radiation, or brachytherapy, a procedure in which doctors put a ring around her cervix.
Although she was sedated, "it was insanely painful," Reyes said, and lasted two hours each time.
When the treatments ended, the oncologist and radiologist directed her to return in nine months for a positron emission tomography (PET) scan, she recalled.
But Reyes started to experience additional symptoms shortly thereafter. Doctors initially thought they were caused by radiation damage, but one month later, she was not better. Doctors told her to wait three months and see if the symptoms resolved, then six months.
"I just knew" the cancer was not gone, Reyes said. But she could not undergo a diagnosing PET scan because the radiation she'd had could create a false-positive reading.
Through a Medicine Grand Rounds review of her case at Duke University School of Medicine, a gynecological-cancers specialist determined that Reyes probably still had cancer, she said. Reyes underwent a radical hysterectomy in October 2016, which removed her cervix, uterus and ovaries. Doctors found a small bit of residual cancer.
"I was so grateful" the cancer again was caught early before it could spread, Reyes said.
But nothing could have prepared her for the emotional toll of having had the radical surgery. Losing her reproductive organs plunged her into instant menopause, without the gradual hormonal transitions experienced by most women. The jarring impact wreaked havoc on her emotions, she said.
But her ordeal was not done yet. Reyes started to experience severe back pain, and an ultrasound found that both of the tubes that transport fluids from the kidney to the bladder, called ureters, had been so damaged by radiation treatments that they were closing down. Doctors inserted stents — small tubes — into the ureters to open the obstructions.
But the stents caused her excruciating pain that sent her to the emergency room multiple times; doctors could do reconstructive surgery, but she was told she'd have to wait three months, she said.
Each day Reyes took Percocet, a narcotic to help blunt the pain. Given her inability to work, she moved in with her parents and eventually had the successful reconstructive surgery.
HPV still wasn't done with Reyes, however. A concerning Pap smear in October 2017 found that she had precancerous HPV lesions on her vaginal wall. Doctors applied topical chemotherapy treatments to try to put the lesions into remission, and by January 2018, the lesions had disappeared.
Knowing she has one of three aggressive strains of HPV known to cause cancer is still sobering to Reyes.
"I will likely continue to fight this," she said.
Reyes gets checked now every three to six months to make sure the lesions and cancer haven't returned. Having HPV puts her at higher risk for other types of cancer as well.
The toll of cancer has not been merely bodily, however.
"When you are going though chemotherapy and radiation you are so sick and so tired. You have this tunnel vision to get to the end. I wasn't very emotional at that time. But when the treatment ends, you are used to seeing multiple doctors every day. Fear comes with not being monitored every day. That's where the anxiety, grief and sadness hit me — when I was finished," she said.
"I had PTSD and anxiety; I couldn't go to doctors' appointments alone; I had panic attacks. People talk about how you're so strong and so brave. What other choice do you have? I know the rug can be ripped out from under me at any point, and that's a really scary place to be," she said.
There are also the continuing physical challenges. Reyes must wear an estrogen patch to make up for the plunge into menopause; she takes medication for painful bladder spasms and has an inflammation of the intestines; there are sexual side effects. She sees a pelvic physical therapist to try to break up the scar tissue caused by surgeries and radiation. And there are the daily physical reminders: the three tattoos where the radiation was targeted and a long scar permanently etched south of her navel.
But now she has a new focus: spreading the word about HPV and the importance for everyone — male and female — to receive the life-saving vaccine. Reyes is spreading the word through Cervivor, a cervical cancer awareness group.
Each year, 13,000 women in the U.S. will get cervical cancer. More than 4,000 will die, according to the organization. Worldwide, that number balloons to 528,000 diagnoses annually and 266,000 deaths among women.
The number of people vaccinated against HPV remains low. Only 53 percent of girls and 44 percent of boys have received the recommended doses, according to the CDC.
A Sept. 7 editorial in the online clinicians' resource Medscape states: "No vaccine has suffered more from misinformation and ill-founded concerns than the human papillomavirus (HPV) vaccine. Antivaccine activists have claimed that HPV vaccine causes chronic pain syndromes, chronic fatigue, sudden death, and a variety of autoimmune disorders. In addition, activists have gone so far as to claim that the HPV vaccine increases risky sexual behavior."
But Reyes said those fears are unfounded.
"I don't think you have to talk to kids about sex. All you have to say is that you get the vaccine to protect you from getting a life-threatening disease," she said.
Medical professionals say it's important to be screened regularly and to receive the vaccine against HPV early on. The recommended ages are between 11 and 26 years of age. But anyone can receive the vaccine.
Reyes' daughter, now 11, received the vaccine this year. Her son also will be vaccinated at that age, she said. It wasn't difficult to convince her daughter of the importance of getting the shot.
"She was 8 when I developed cancer. She remembers how sick I was, of my missing birthday parties and Christmas. I told her, 'This shot is so you will never get this cancer that I had.'"
Reyes never thought she would be talking in public about her private ordeal, she said, but the stigma and embarrassment around cervical cancer must be eliminated, much in the way people now talk about breast cancer.
"I know right now there has to be a bigger purpose, and that's to make sure that no one has to go through this," she said. "Knowledge is power."
Cervical cancer and HPV information
Cervivor, information on cervical cancer: cervivor.org
American Cancer Society: cancer.org