Fighting cervical cancer
One local woman’s lost battle opens the discussion about prevention
By Joan Trossman Bien 03/08/2012
Amy Reinert of Ventura passed away the last weekend of February. She had been diagnosed with an aggressive form of cervical cancer. Only four months had passed, from the day that she first learned she was sick until her death.
Amy Reinert was 36 years old.
Matthew Hill was Reinert’s boyfriend for many years and he was at her side from the first symptom until the end. Hill, a freelance photographer, said that Reinert was an unlikely cancer patient.
“She was a very healthy person, ate organically, very conscious of what she was eating, very athletic, exercising three or four times a week,” Hill said.
Reinert’s family and friends are still reeling from this tragedy and Hill is telling the story to let readers know that no one is immune to cancer.
“Her family is from Pennsylvania and, by the grace of God, they had picked up their whole life and moved out here in August, two months before Amy got sick,” Hill said. “Just a coincidence. It was hard enough but I was really lucky that they were here.”
It began with a painful lump on the side of Reinert’s neck, something she thought was a pulled muscle. That day, she went to work where she was a teacher at Buena High School, and saw the nurse. Reinert was sent to see a doctor. Tests were run all day and Reinert was then sent to the hospital emergency room. It was there that the diagnosis of cervical cancer was made. The lump on her neck was where the jugular vein had become clotted and nearly blocked. It was at that point that the doctors gave Reinert a 25-30 percent chance of a five-year survival.
The first PET scan revealed the cancer had spread to the pelvic area and to a few lymph nodes. Chemotherapy was started, something that was incredibly hard on Reinert. Halfway through, they did another PET scan and things had changed.
“Things had progressed so severely, you didn’t need to be a doctor to read that scan,” Hill said. As doctors considered new approaches, complications multiplied.
“So I brought her home the day before she died,” Hill said. “She was home for 36 hours before she died. You just can’t believe that.”
Hill said he was disappointed by some of the doctors. “Even when we went back and the PET scan was so bad, they talked about changing the treatment but they never said to get your affairs in order. They never did.”
They learned that Reinert was terminal when a hospice team showed up in her hospital room offering palliative care.
“Amy said something amazing to me the day before we left the hospital and she knew she was going to die. She said she wasn’t scared but was worried that people will feel that she let them down. She’s a day away from death and she’s worried that she didn’t work hard enough to get it done. I just loved her to death.”
Buena High School teacher Amy Reinert died four
months after she was diagnosed with cervical cancer.
Recommendations always play the odds
According to the website of Cancer.org, “The change from cervical pre-cancer to cervical cancer usually takes several years, but it can happen in less than a year. … In some women pre-cancers turn into true (invasive) cancers. Treating all pre-cancers can prevent almost all true cancers. … Some researchers estimate that non-invasive cervical cancer (carcinoma in situ) occurs about four times more often than invasive cervical cancer.”
In Reinert’s case, she may have been extraordinarily unlucky. It is possible that, against huge odds, she developed an aggressive form of cervical cancer that might not have been prevented with early detection and treatment. There is simply no way to know. Hill said a failure to have a very recent Pap test may have been an example of slipping through the cracks as Reinert changed insurance programs.
A 2000 National Health Interview survey found that 7 to 11 percent of women had not had a Pap test within the previous three years. The reason given was that their doctor had not recommended it. Other barriers to regular screenings are fear that the test will be painful, confusion about how often to have the test, what the test actually does, why the test is so important, or being underinsured or uninsured. What may be inconvenient and a bit uncomfortable for a woman can actually save her life.
The same week that Reinert first noticed a symptom, in October 2011, the United States Preventative Services Task Force, supported by the American Cancer Society, recommended that women only get a Pap test once every three years.
The New York Times reported that the reason for fewer tests was explained by Philip Castle of the American Society for Clinical pathology. “If you test every year, you find a lot of benign infections that would go away on their own,” Castle said. “You end up overscreening, overmanaging and overtreating women who are not actually at risk of getting cervical cancer.”
Traditionally, women have been advised to get an annual Pap test, which microscopically examines the surface cells of the cervix. The most recent advice is, if a woman has had three annual Pap tests that were clean, then she only needs to have the test every three years.
The history of cervical cancer, however, and the dramatic decline in cases over the past 50 years is based on getting the test once every year. For women with high risk factors, such as smoking, family history or being daughters of women who were given the hormone DES during pregnancy, many physicians ordered a Pap test every six months.
A just-released study out of Sweden looked at how well the Pap test, when given regularly, prevented terminal cervical cancer compared to women who had not been regularly screened and developed cancer that was diagnosed only after symptoms had appeared. The interval between screenings, which was considered to be regular, was not quantified.
Women whose cancer was detected through screening had a 26 percent increase in their absolute cure rate compared to women who had become symptomatic. Invasive cervical cancer, the most deadly type, was cured in 92 percent of women who were diagnosed by screenings. That compares to a cure rate of 66 percent of women who were symptomatic when diagnosed with invasive cancer. An absolute cure rate reflects the same mortality rate as that of women who are cancer-free.
So the question for doctors and patients becomes whose health is more likely to be seriously damaged? Women with cancer who face a higher death rate without regular and frequent screenings or women who do not have cancer but whose test is a false positive? Although a false positive is expensive and very frightening, no one dies. Again, the optimum frequency of a Pap test must be made by the patient and her physician.
Fred Wyand is the director of communications for the National Cervical Cancer Coalition. He said the Pap test has changed the lives of American women. Before the development of the Pap test, more women died from cervical cancer than from any other cancer.
“Since the 1970s, the spread of cervical cancer and mortality rates associated with cervical cancer have essentially been halved in the U.S. HPV is a near universal infection and I don’t think the safer sex message gets as much play here as with other STDs (sexually transmitted diseases),” Wyand said. “Genital HPV infections are something virtually everyone who is sexually active will have at some point. They are almost impossible to avoid, short of a life of celibacy, which isn’t realistic for the majority of the population.”
We know a lot
The human papillomavirus (HPV) is well-known to be the cause of most cases of cervical cancer and cancers of the throat and tongue. Not as well-known is the fact that it can cause least seven different cancers. Once you catch this virus, which is easily transmitted by skin-to-skin contact during sexual activity, if your own immune system is unable to eliminate it, you will carry the virus the rest of your life.
In addition to the standard Pap test and the more specific HPV test, a vaccine that can prevent the transmission of HPV has been on the market for girls. It is called Gardasil and has been recommended by the Centers for Disease Control for all girls and young women ages 9-26, ideally at age 11 or 12. The series of three shots should be completed within six months of the first vaccination. This vaccine must be given before the girl has experienced any sexual activity at all, because HPV can be transmitted the very first time there is sexual activity.
Now the CDC and the Academy of American Pediatrics are recommending that all boys and young men, ages 9-26 also get the Gardasil vaccination. Why? Because among the cancers caused by HVP are those that affect the head and neck. Although not common, the numbers are rising. Again, the recommended age for the vaccine is 11-12 years old, well before any sexual activity. In the case of boys, that age is when the vaccine produces higher antibodies than at older ages. Gardasil is strongly recommended for gay and bisexual men. The CDC says on its website that since sexual orientation for men is often undetermined at the ages of 11 and 12, all boys should be vaccinated.
The vaccine has been well-proven to be safe and effective. Although serious side effects have not been documented, mild side effects may include pain where the shot was given, fever, headache and nausea. The CDC says that, as of September 2011, about 40 million doses of the vaccine have distributed in the U.S. It is continuing to monitor Gardasil for safety.
Approximately 20 million Americans are infected with HPV, most of whom are unaware of the virus. People who do not know they are carrying the virus are more likely to pass it on to their partners because no extra precautions are taken. Condoms are always a very good idea but they cannot prevent the spread of HPV all of the time.
The big controversy
Dr. Shayla Kasel is a family physician in Simi Valley. As a cradle-to-grave doctor, it is important for Kasel to have open and honest communication with her patients. She said that she has been pleasantly surprised at the response of some parents about Gardasil.
“I have had lots of success with the girls,” Kasel said. “Interestingly, it is the more educated parents (professionals, other doctors) that are coming in and requesting Gardasil for their sons even before we bring it up!”
Kasel said that even parents who readily agree to the usual vaccinations can hesitate. “Most parents vaccinate, but sometimes with Gardasil they rationalize that their daughter is not sexually active yet so they don’t need it. The denial is that their daughter will never have sex before marriage.”
Fred Wyland agrees with Kasel. “It is important that parents understand the potential severity of HPV-associated diseases such as cervical cancer. Such messages should not be overly alarmist, no need for scare tactics, but the vaccine is better received when people have a specific disease to attach to it, rather than it simply being a virus that they do not know much about.”
The controversy over the safety and efficacy of Gardasil was revived recently. Texas Gov. Rick Perry was the target of anti-Gardasil attacks during a Republican debate last September. Rep. Ron Paul, R-Texas, and Rep. Michele Bachmann, R-Minn., criticized the governor’s order that all girls in Texas be required to be vaccinated with Gardasil. They accused him of pandering to the manufacturer (Merck and Co.) as a way to sell more vaccines. Even after Perry abandoned that mandatory program, Bachmann continued to criticize the vaccine. Bachmann claimed on the Today show that a woman had approached her to let her know that Gardasil caused mental retardation. Without checking into the veracity of the claim, Bachmann repeated it as fact. It was later proven to be completely unfounded.
Websites known for their anti-vaccination agendas, such as NaturalNews.com and SaneVax.org, have responded on their websites to the recent recommendation by the CDC that all boys, along with all girls, be vaccinated at age 11 or 12 against HPV, pouring gasoline on the very fears that have been discredited.
“Thousands of young girls around the world would have suffered debilitating, permanent neurological damage from getting the Gardasil series of shots. Many of them are now paralyzed as well, and suffer from chronic autoimmune disorders, extreme fatigue and incapacitating muscle weakness, and at least 100 girls have died. If boys start getting the shots as well, you can expect a massive upswing in serious negative side effects and deaths among this segment of the population as well.
“The fact of the matter is that Gardasil is a dangerous, unproven vaccine that has no place in medicine,” reported NaturalNews.com.
Parents, who now fear the vaccines more than the diseases they prevent, are withholding the vaccinations from their children at an increasing rate. The fallout from such disinformation about all vaccines can be seen in the rise of measles epidemics this past spring. Pediatricians now face this propaganda as they try to convince unwilling parents to give their children the Gardasil vaccination.
This vaccine is pricey
Cost of medical care is one of the main reasons women and some men visit Planned Parenthood clinics. Christine Lyon is Planned Parenthood’s local vice president of external affairs. Lyons said that the $285 cost of Gardasil can be daunting.
“We are primarily in the preventative health care business,” she said. “We want to provide clients with anything we can to help them prevent pregnancy or illnesses.”
The National Cancer Institute reported that in 2012, it expects 12,170 new cases of cervical cancer in this country and 4,220 deaths from cervical cancer. The urgency of preventing this tragedy is on the minds of most health care providers.
The latest statistics for California that were broken down by county were published in 2009 and covered the years 1999-2007. There is mixed news for Ventura County. Overall, Ventura County’s rate of mortality for cervical cancer is slightly below the state’s average, coming in at 11th place. Hispanic women, however, get and die from cervical cancer at a rate well above the state and national average. In mortality, Ventura County is fifth in the state.
Most of the clients at Planned Parenthood do not have private insurance, which generally does cover the vaccine. Public insurance does not cover it. Children younger than 18 years old are referred to community clinics where they can get the vaccine for free.
“As a last resort,” Lyon said, “we have an HPV Assistance Fund for those who do not qualify for any of the other options.”
Teens who want the vaccine are permitted in California to get health services by themselves. “Teens can access confidential services without parental notification for HPV, beginning at the age of 12,” Lyon said. “That goes as far as birth control, abortion, mental health, alcohol and drugs.”
Planned Parenthood has seen a number of parents who did not want their children to get the vaccine. “I would say to parents who believe the vaccine will encourage preteens to have sex the same thing that I say to parents who believe that sex education encourages promiscuity,” Lyon said. “I think, for the first time, we have a vaccine that can prevent a certain type of cancer. This is groundbreaking. If kids are going to have sex, they are going to have sex. Putting that concern over and above the health and safety of your daughter is naive, it’s unfortunate.”
Wyland agrees with Lyon. “As the old saying goes, HPV vaccination doesn’t encourage teens to have sex any more than a car equipped with seat belts causes them to speed.”
There will be a memorial for Amy Reinert on Saturday, March 10, 1-3 p.m. at Arroyo Verde park. Bring chairs and blankets. There will be a brief non-denominational service.