Sage Stories: Andrea Bonhiver

Andrea was diagnosed with early-stage cervical cancer at 33 years old. She didn’t have any symptoms or clues that something was wrong. She went to get a regular pap smear and physical in the summer of 2017. She’d had several pap smears since she was in her early 20s and they were always painless. In her experience, doctors had always been very accommodating to her if she felt nervous during a pap smear. They would offer to go slower, to use a smaller speculum if needed, and always tried to complete the procedure as quickly as possible. The discomfort of having a speculum inserted and the brushing used to gather cells for the sample had always been a mild and temporary pressure, and it was the same experience that day. She always prioritized getting pap smears even though they’re not the most fun thing in the world, because she wanted to stay healthy and make sure she was able to have children someday.

However, this time Andrea’s results came back showing high-risk HPV types 16 and 18 on her cervix. She had never had this result before. To be extra careful, her doctor recommended she undergo a procedure called a colposcopy. This is where your cervix is viewed with a high-power microscope, and your doctor can take a small biopsy of the areas with cervical dysplasia (evidence that high-risk HPV cells are starting to mutate your healthy cells). It’s a way to confirm that the high-risk HPV cells are at a low grade, and that further intervention isn’t needed.

For Andrea, it was an extremely painful procedure. The only pain-relief offered to most women for this is to take three ibuprofen 45 minutes beforehand. She felt that it didn’t provide any relief whatsoever and was in excruciating pain for the rest of the day and into the next. There’s also a span of time after the procedure where for up to a week, you bleed what looks like coffee grounds and you have to wear a pad until it ends. Andrea’s results came back a few days later, confirming that the high-risk HPV cells were at a low-grade level. Her doctor suggested waiting a year and then checking again. Many women have immune systems that will clear an HPV infection without any medical intervention. Andrea put it out of her mind and continued on with her life. The whole experience was highly unpleasant, so she hoped she wouldn’t have to do it again. Little did Andrea know that things would get much worse the following summer.

In the summer of 2018, she went back to her doctor for another pap smear to check on those high-risk HPV cells. This time, the high-risk HPV seemed more worrisome to her doctor. Her doctor did another colposcopy and this time she took many more biopsies of what looked like possible problematic areas on Andrea’s cervix. Andrea did her best to distract herself and get through it, but thought it was just as painful and unpleasant as she remembered. When her doctor was finished, she came up to the side of the bed Andrea was lying on and grabbed her hand. Andrea’s doctor said she didn’t want to scare her, but her gut feeling was that she should probably undergo a surgical procedure called a LEEP (Loop Electrosurgical Excision Procedure). She referred her to a gynecologist who could perform the operation the following week.

The LEEP was the most traumatic medical experience Andrea had ever experienced to that point in her life. A lidocaine needle is injected into your cervix to somewhat numb it. When lidocaine enters your bloodstream, many people have a reaction to it that involves a fast and hard heartbeat, and uncontrollable shaking. Andrea unfortunately had that reaction and began to feel faint. A machine is then used to cut what looks like a cube of tissue from your cervix, so that cells that are deeper can be studied and analyzed. The procedure is considered to be relatively short, so most of the time women are not put under anesthesia for it. Andrea spent a long time dealing with flashbacks and nightmares from that experience, and really wished there had been some way for her to have not been awake during it. After the surgery, you once again will bleed and cramp for several days and cannot wear a tampon.

The day after her procedure, Andrea received a phone call from the gynecologist’s office. She was surprised to hear her voice on the other end. She personally called me herself. She spoke slowly and told me that the biopsy had revealed that Andrea had something called Adenocarcinoma in Situ on her cervix. It was cancer. She calmly and gently repeated herself several times, as the information just wouldn’t sink in. It was as if a bomb went off right in front of Andrea’s face and she couldn’t hear or comprehend anything. Did she just hear the C word? The “good” news was that she found it in the earliest stage - often called Stage 0. The bad news is that Andrea would need a hysterectomy within a year and the nurse was going to refer her to an oncologist.

Andrea hung up and fell back onto her bed. Her husband found her there and they both cried for a while, then called their families and let them know the news. No one tells you how hard it is to get a cancer diagnosis, and then be tasked with breaking the hearts of the people you love. It’s so unfair.

Andrea saw the oncologist a couple of weeks later. She told her that some couples hurry up and try to have a baby when they receive this diagnosis. The cancer can grow slowly sometimes, so many will take the risk of waiting for the hysterectomy. However, if she was to get pregnant, that would be a high-risk situation and she would need a lot of medical support. After the baby would be born, she would need a hysterectomy at six weeks post-partum. Andrea and her husband thought about it for a short time (there wasn’t much time!) and decided that if they didn’t even give it a try, they’d regret it. They had only been married for two years when this all happened and hadn’t decided when they wanted to try for a baby. They didn’t feel that there was any rush. But this obviously changed things and they committed to trying for six months. Andrea underwent an ECC (Endocervical curettage) test at her oncologist’s office every other month, to be certain the cancerous cells were not making their way further up her cervix. This was just about as fun and stress-free as it sounds.

Unfortunately, Andrea and her husband weren’t successful and in March 2019 at age 34, Andrea had a hysterectomy. Her uterus, fallopian tubes, part of her upper vagina, and of course cervix were fully removed. Andrea was able to keep her ovaries, as modern research has shown that they provide additional protection against things like osteoporosis for women as they age. Thankfully, a few days after her surgery Andrea received a call letting her know that the hysterectomy was fully curative, and she was cancer free.

The news was obviously thrilling to everyone around her. And don’t get her wrong, Andrea was happy to have the fear and anxiety of living with a cancer diagnosis finally be gone from her life. However, she had lost so much. As relieved as she was to know that she wouldn’t need further treatment, Andrea was heartbroken over the loss of fertility, trying to make sense of life in her new body, and riding the waves of conflicting emotions constantly; not to mention, recovering from a hysterectomy for eight weeks, having family and friends take care of her, taking a leave from her job, and battling depression and anxiety. It was an incredibly surreal and confusing time that lasted long after her body had healed.

In the four and a half years since her surgery, Andrea has undergone a yearly pap smear to check for HPV cells. She will do this again in March of her fifth post-cancer year, and then will be able to start being checked every other year.

Andrea also decided to get the HPV vaccine a few months after her surgery. The CDC changed the guidelines for the vaccine in 2019, making it available to women up to age 45. Andrea wanted to help her immune system fight HPV and was not vaccinated as a teen, so this felt like the one thing she could do to fight back. Vaginal, anal, vulvar, and head, neck and throat cancers can all be traced back to HPV infections, so it was still very important to be sure her body had all the tools possible to keep HPV from creating any more problems.

As a way to cope with what she’d been through, Andrea designed and wrote a book called The Cervical Cancer Companion. When she was dealing with her diagnosis, she felt very alone and isolated. Andrea didn’t know anyone else who had been through something like this and found that it was somewhat unique that the cancer was discovered before she had children. Andrea desperately wanted a friend to grab her hand and tell her what to expect and walk with her through this experience. The book is intended to be just that for newly diagnosed women. Andrea shares excerpts from her own journaling, provide journaling prompts for each stage of the experience (your first oncology appointment, telling people you have cancer, getting ready for treatment, etc.). There are care calendars and ways to make lists to prepare for what’s to come. Andrea wanted to take everything she learned and help the next person feel less alone.

What Andrea hopes everyone reading this walks away with is the knowledge that HPV isn’t a promiscuous person’s infection. It’s often referred to as, “the common cold for the sexually active adult.” Most humans will encounter HPV at one time or another, whether they know it or not. You can get it from skin-to-skin contact with just one partner. It’s not something to be ashamed of and it should be destigmatized. HPV doesn’t always cause cancer and as previously mentioned, many people clear active infection on their own without intervention. HPV jokes in movies and TV are cheap humor, and not something to be mocked. She would love for the stigma around HPV to go away so that more people understand it, get screened for HPV, and get vaccinated against it. Vaccination is the one hope for future generations of women and men avoiding the kind of grief and pain she and her husband experienced.

Today, Andrea and her husband are the proud parents of a 1.5-year-old little boy named Sam, by the miracle of adoption. They can’t imagine their lives without him and although their path was painful, they are grateful and amazed at where their story has taken them.