Previvors Aren’t Only Breast Cancer: My HPV Story and What It Taught Me
In 2010, I found out I was HPV positive. My doctor saw precancerous cells on my cervix, and they were growing. The next step was a colposcopy. Then I lost my job, and my insurance went with it.
Within a year, I found a new job, but I had to wait for the new insurance to start. Every day of that gap, I knew those cells were still there, and I couldn’t do a thing about it. When the coverage finally kicked in, I went straight to a gynecologist.
My doctor suggested freezing the cells, because she was worried they had already turned into cancer. I asked her for something bigger. I had been dealing with heavy bleeding every month and cramps that knocked me flat. I also knew I was done having kids. So I asked for a total hysterectomy, and she agreed.
The pathology showed the cells had advanced. It also showed fibroid tumors and endometriosis. She never told me I had cervical cancer. She did tell me she was glad we got it out when we did. Then she told me something I’ve held onto ever since. HPV can come back if any cells were left behind, so I needed to keep getting checked every year.
I never looked back on that choice. A hysterectomy is a big decision, and it isn’t the right answer for everyone. For me, it was the right call with the right doctor.
What Is a Previvor?
A previvor is someone with a higher risk of cancer who has never been diagnosed. FORCE coined the word in 2000, and it stands for a “survivor of a predisposition to cancer.” National Previvor Day is September 30 this year.
The word gets tied to breast cancer and BRCA a lot. Those stories count, but the definition is wider. It covers people with an inherited mutation or family history, plus anyone with another factor that raises their risk. That wider definition is where I fit. It’s also where a lot of women with gynecologic risk fit, and many of them have never heard the word.
Gynecologic Cancer Risk Counts Too
Previvorship shows up across gynecologic cancers. Here are a few examples worth knowing:
- Cervical cancer. HPV causes most cervical cancers. People with high-risk HPV and precancerous cells live with that risk, sometimes for years.
- Ovarian cancer. BRCA1 and BRCA2 mutations raise the risk of ovarian and fallopian tube cancer, along with breast cancer and others.
- Uterine (endometrial) cancer. Lynch syndrome raises the risk of endometrial and ovarian cancer. It’s less known than BRCA, but more common. About 1 in 280 people has a Lynch syndrome mutation.
HPV doesn’t stop at the gynecologic areas. It also causes some cancers of the anus and the back of the throat, including the base of the tongue and tonsils, and it affects men as well as women. In fact, throat cancer is the most common HPV-related cancer in men. You can read more in the CDC’s report on HPV-associated cancers.
If any of these sound like you or your family, bring it up at your next appointment. A doctor or genetic counselor can walk you through what your risk looks like. FORCE has information by gene and by cancer type if you want to read more first.
A Hysterectomy Doesn’t Always End the Checkups
This one surprises people. Many assume that once the cervix is gone, the Pap tests stop too. That’s true for a lot of women. But if your hysterectomy was done to treat cervical precancer or cancer, the guidelines say to keep screening. For people with a history of CIN2 or CIN3, that testing continues for at least 20 years after the abnormal cells were found.
If you’ve never heard of CIN, you’re not alone, I hadn’t either. CIN stands for cervical intraepithelial neoplasia, which is a medical name for precancerous cells on the cervix. Doctors grade it from 1 to 3. CIN 1 is mild and often goes away on its own. CIN 2 and CIN 3 are higher grade, which means the cells look more abnormal and cover more of the cervix. Your report might also say “cervical dysplasia,” “LSIL” or “HSIL,” which are other names for the same kinds of changes. I went from 1 to 3 within a year and was on a trajectory straight to cervical caner.
So if you had a hysterectomy because of abnormal cells, ask your doctor whether you still need screening. Don’t assume you’re done. Roswell Park has a helpful explainer on cervical cancer risk after a hysterectomy.
The Question I Still Carry
A few years after my hysterectomy, I was diagnosed with non-muscle invasive bladder cancer. Some part of me has always wondered if HPV played a role. Nobody can confirm that for me. The research is still split. Some studies find a link between HPV and bladder cancer, and others find only a weak one. There are correlations but scientists haven’t found the causation to prove HPV…yet.
I share this because a lot of us live with questions like that. You connect dots in your own body that science hasn’t connected yet. It’s okay to ask your doctors about it. It’s also okay to want better research, and to say so out loud.
When Insurance Gets in the Way
The scariest part of my story wasn’t the surgery. It was the waiting. Losing coverage in the middle of a health scare happens to a lot of people, and it can delay care that shouldn’t wait.
If you’re uninsured or underinsured, look into the CDC’s National Breast and Cervical Cancer Early Detection Program. It offers free or low-cost cervical and breast cancer screening. You could qualify if you’re 21 to 64, your income is at or below 250% of the federal poverty level, and you have no insurance or your plan doesn’t cover screening. You can also call the CDC at 1-800-232-4636. The American Cancer Society has a plain-language guide to the program too. Community health centers are another option, since many charge on a sliding scale based on income. You can find a health center near you here.
You Don’t Have to Carry This Alone
Previvors often feel stuck in between. You aren’t a cancer patient, but you aren’t worry-free either. That space gets lonely.
Imerman Angels connects previvors with Mentor Angels who understand genetic mutations, testing and cancer risk. FORCE supports people facing hereditary ovarian and endometrial cancer risk, including those with Lynch syndrome and BRCA mutations.
Where to Start This Week
- Ask your doctor if your history puts you in a higher-risk group.
- If you had a hysterectomy for abnormal cells, confirm whether you still need screening.
- Ask relatives about ovarian, uterine and colon cancer in the family.
- Talk with a genetic counselor if cancer runs in your family.
- Browse my Cancer Support Resources page.
If you like keeping your health history on paper, my Cancer Care Book gives you one place for appointments, questions and notes. I built it for people going through cancer, and it works well for tracking screenings too.
To every previvor reading this, your risk is real, even without a diagnosis. You deserve support now, not only after cancer shows up.
This article is for information and support only. It is not medical advice. Please talk with your doctor or a genetic counselor about your personal risk.