Three Women, HPV and Cancer

The HPV Vaccine has a bad reputation and low uptake, in spite of evidence supporting its safety including very large scale studies, and growing evidence of its effectiveness. But it is a vaccine that has the potential to save many, many lives, especially in developing countries but not only: in the United States, for example, close to 12,000 women develop HPV related cervical cancer each year, and in 2009, 3909 women died from it. Over 90% of invasive cervical cancers in the world contain some strain of HPV. The strains in the vaccine are responsible for approximately 70% of cervical cancers. HPV can also lead to other cancers. In a recent news story, Michael Douglas announced that his throat cancer was the result of HPV contracted through oral sex. 

In this post, three very different women talk about their struggle with HPV and about the effect cervical cancer had on their lives. All of them emphasize how lucky they were: they all survived, and they all survived without a hysterectomy, and two of them went on to have children. But they hope in future, fewer women would suffer as they did. The stories should also highlight that this can happen to any woman, regardless of life style and family history.

Because of the private nature of these stories, at the request of two of these women, their names were changed.

Lynette’s story (name changed to protect the speaker’s privacy):

When Lynette married in 1975, at the age of 27, her husband was the first man with whom she had a sexual relationship. Lynette explains: “With the HPV my husband had a wart on his penis. I was naive even though I was 27 and didn't realize what it was.” The HPV was discovered shortly after the marriage, when she was pregnant with her first child: “I noticed I had "lumps" on the outside of my vagina, not realizing they were warts or how I got them. I went to my doctor. My vagina and cervix were riddled with them. I had to undergo 2 operations under general anesthetic when I was 5 and 7 months pregnant. Doctor said the pregnancy had allowed them to flourish. I remember the second op report said I had more than 100 lesions.” Lynette considers herself lucky: after the second operation, she did not have any recurrence of the warts. But she believes the operations she had to undergo directly led to her son’s health problems: ”..he was only 6 and 1/2 pounds (babies 2 and 3 were both nearly 9 pounds).” She mentions a variety of health problems her child suffered.  In spite of her initial bad luck – getting HPV from her first husband and partner, having to undergo two surgeries while pregnant – she did not have lasting damage. She did stay under close medical supervision: for the next 15-20 years, Lynette had to undergo annual pap smears. She went on to have two more children with her second husband.  

Ironically, Lynette heard horror stories about the HPV vaccine. At that time, she explains, she got quite a bit of information from the unreliable site Natural News. So, “I flipped out when my then 22 year old daughter told me she had had the first in the Gardasil series. I was believing the stories about girls dropping dead, becoming disabled. She rolled her eyes and told me not to believe everything I read on the Internet. That's when I decided to do some more investigating…” Upon investigating, Lynette learned how unreliable the information she found on anti-vaccination sites really was. She now devotes time out of her busy schedule to respond to anti-vaccine claims, and firmly encourages parents to get the HPV vaccine for their daughters, to protect them from what she went through.

Annie’s story (name changed to protect the speaker’s privacy):

Annie grew up in California, a child of the 1960s. She explained: “I frolicked about; so did most of my sexual partners.” While in college, she met her first husband, and they married. However, Annie explains, “when we got out into the real world, it became apparent that the things that made us get along in college didn’t work”. They divorced, and sometime later she married her second husband, who had two children from a previous marriage, and they added a daughter to the family. Shortly after the marriage, the children’s mother – Leah (name changed to protect the person’s privacy) moved nearby, and the children started spending a week in each household. Annie and her step-children’s mother became very good friend; good enough that when Leah had cervical cancer Annie knew of it and could appreciate and sympathize with the pain Leah went through. Leah had to undergo a hysterectomy. Annie described this as “painful and really, really difficult.”

When Annie’s own cancer was discovered she had Leah’s story to inform her and Leah’s painful experience to add to her fears.

It started with an abnormal pap smear that led to further tests. Annie describes what happened next: “finally it was determined that it was sufficiently suspicious that I did a cone biopsy. You see, the cervix is kind of like a donut with a tiny opening (that gets enlarged when you give birth). So for a cone biopsy they take, they excise, a cone of the cervix. (Annie added, looking at my reaction: “Dorit has a painful expression on her face”). Typically it’s done under general anesthesia, and while I was under the anesthesia the surgeon did, I forget what it’s called, it’s when they sliced the excised material really thinly, and it did have cancer cells. Basically because if there was a sufficiently suspicious mass they would stop the surgery and wake you up and schedule you for a hysterectomy, which is still the primary treatment for cervical cancer... But I was lucky and that lesion was very localized. It was a carcinoma in situ, so it hasn’t spread anywhere, but it was a good thing that I was done having my family, because as the surgeon explained afterwards I probably wouldn’t be able to carry an infant to term. Because of the amount  of scarring to the cervix. I had two weeks of being pretty darn uncomfortable, not as uncomfortable as after child birth but still painful.”

Annie explained that she was not scared for her life, because “I knew that the chances of this being a highly survivable cancer were very high, and there has been no metastasis. But I was scared about having to have a hysterectomy because that is a major surgery and I knew from my friend, because she did have a hysterectomy, and it was painful and really, really difficult, so I didn’t want that. “ Luckily, she did not need a hysterectomy and after the surgery Annie did not even have to have chemotherapy: everything was removed. She says “I just had to have pap smears every, it seemed like every five minutes … I still have to have them more frequently, but not every five minutes.”

Annie concludes: “What makes me such an advocate of HPV is that it prevents disease, number one, and number two, if I had been younger, I wouldn’t have been able to have children. … I really don’t understand the anti-HPV. As soon as it was available I encouraged my daughter to get it. It came available just after she turned 18, still in high school because her birthday is late. I encouraged her to get it, she did.”

Megan’s Story:

Before discovering her cancer, Megan had four children. Her eldest daughter was 16, and she says: “in 2000 I went to the doctor because I thought I might be pregnant, then I did a smear test, and turned out I was four weeks pregnant and the test came back with a nasty result. Then they said I needed a punch biopsy to find out what was going on and there was a 75% chance that I’d lose the baby with a punch biopsy; so I told them if they touched me I was going to break every bone in their body then I’d go after their families.” Megan continued her pregnancy and did not have the biopsy done until her daughter was 7 months old. “…and it turned out that I was stage III, which over here it’s one stage down from terminal, that’s where we were, and they took me to the hospital to do surgery, and they removed a great deal of my cervix, didn’t remove all of it but they did remove quite a large chunk of it, and we came back another month later for another smear test and an internal so they could have a look and see what everything looked like, and it seems when they went in to remove it they got everything. For which I was thankful. That's why I was so lucky.  I thought I had been given a death sentence, and it was just a hiccup, really.  They caught it early enough that I didn't need any chemo or radiation therapy at all.” Megan was required to have another pap smear test every three month for the next three years. For two further years she had to have a pap smear annually. All in all, she describes the aftermath as “constant smears, tests, and treatment, for about 6 years”.

Nonetheless, Megan says: “I was very lucky, they did not remove anything essential. They told me they removed more than they felt they needed to because they wanted to make extra sure they got it all. II was one of the really really lucky ones because I survived. And I went on to have more babies… what I went through was nothing, and I know that in my head, it was nothing compared to most women who have the cancer, most of them have to go through radiation and chemotherapy and there’s no guarantee that any of that is going to work.”

Lynette, Annie and Megan survived. None of them had to undergo a hysterectomy, as many women who have cervical cancer do. They are strong women, and talk about their experiences in a very matter of fact, occasionally humorous, way. But they urge other parents to offer their daughters the protection available against HPV, which will substantially reduce their chances of suffering in the way Lynette, Annie and Megan did, having to undergo a hysterectomy, or losing their lives.

Acknowledgements: I'd like to thank Michael Simpson and Alice Warning Wasney for their help with this post, and of course, my three impressive interviewees.