I was 26 years old in 2015 when I was diagnosed with cervical cancer. I had gone for the dreaded pap smear that June (my first in 3 years) and when the results came back abnormal, I didn’t think anything of it because I knew I had HPV when I was 19. Then, I put off the follow-up colposcopy for months because I had a new job and trip planned to the Bahamas. I couldn’t be bothered with something as harmless as a few abnormal cells. There was practically no indication I was sick – I felt fine, worked out regularly, and went to happy hours and out on weekends like we all do.
I learned from my OB/GYN that the tumor in my cervix grew slowly over the course of 3 years, as a result of the HPV virus strain I contracted when I was 19. On top of that, I also learned that it could have easily been prevented had I gotten pap smears more frequently or simply received the HPV vaccine. I later found that virtually all cervical cancer cases (and 95% of anal cancer cases) are a direct result of HPV, and thus, just as preventable as mine would have been.
“Women should only receive pap smears once every 3 years, and it’s even less so for women over the age of 30.” according to the US Preventive Services Task Force. It’s a guideline that can prove dangerous. I didn’t know enough to demand an exam when my OB/GYN (a different doctor than the one who diagnosed me) followed this guideline and turned me away at 22, even after a history of abnormal results.
Through my treatment I’ve learned more than I ever imagined I would about cancer, HPV, and how to be my own health advocate. Below are the top insights I’ve gained through my treatment journey. I hope you never have to experience it, but if you do, maybe you’ll find these tips helpful and feel a little less in the dark about the process as a result.
January is Cervical Cancer Awareness Month. It’s the perfect time to set up a screening appointment with your OB/GYN. Set a calendar reminder, write yourself a sticky note, commit this to memory, but whatever you do, don’t avoid it. This is one yearly doctor’s visit we as women just can’t afford to miss.
1. The best treatment is prevention – yearly pap smears and vaccination.
If it’s been over a year since your last pap smear, now is the time.
2. Always, always get a second opinion when you’re first diagnosed.
Do your due diligence, this is your life. Your doctor won’t be offended. This leads me to my next point…
3. Stand your ground if something feels wrong. Only you know how you feel and you need to be your own health advocate.
An example of this – at one point during treatment I came into the ER with a 103° fever, chills, and extreme pain in my left side. The ER ran some tests, gave me antibiotics and tried to send me on my way. After my insistence that I was still in a great deal of pain, they ran a blood test and found I had a severe kidney infection and sepsis. If I had gone home without a fight, I could have easily died that night. Doctors can be wrong.
4. Talk to someone who’s gone through it to get a better idea of what to expect.
After the initial diagnosis, your doctor will refer you to a specialized oncologist based on the type of cancer it is. This specialized oncologist likely has a few patients who would be willing to talk you through their experience. When I wanted to try keeping my hair through chemo, my oncologist connected me with a very nice and helpful older woman who had successfully gone through the same procedure. Thanks to her guidance and help from friends and family, I was able to keep almost all of my hair!
5. Write down your questions when you think of them, you probably won’t remember them all when you’re in the office.
If you’re going through treatment of any sort, not just for cancer, you’ll likely think of questions at random times between appointments. I had a running list of notes on my phone to ask my various doctors questions about my treatment.
6. Ask about options, explore varying treatments — and their consequences. Do research outside of just what your doctor tells you.
Doctors are knowledgeable but human too, they can’t know everything. Arming yourself with information will give you more confidence in making decisions.
Make sure to stick to trusted sources – Google Scholar is a great tool for this. You’ll have to read through some medical jargon but this is where you’ll find all of the actual published case studies your doctors are reading and referencing as well.
When my doctor made the case for a certain route of treatment, it took me 2 minutes to find the exact study he used to base his plan off of.
7. Ask about the entirety of the treatment plan your doctor has in mind. Don’t be caught off guard.
Things to ask include: The number of chemo and radiation sessions total, planned end date of treatment, and if they’ll want you to go through a round of adjuvant chemo.
Adjuvant chemo includes additional rounds of chemo sessions your doctor might recommend you go through to reduce the risk of recurrence, as opposed to fighting the existing cancer. I was caught completely off guard when my doctor recommended I get an additional 4 sessions of chemo after my initial treatment, which is why I suggest asking your doctor for their full treatment plan upfront.
Be sure to also ask about tests and what should happen if the results come back one way or another. The best thing you can do to prepare yourself is be informed.
8. Fertility may be a concern as some treatments severely affect it. Ask your oncologist how your treatment will impact your fertility. If it will, ask to postpone treatment by a few weeks to go through an expedited round of IVF to freeze eggs. That is, if you think you may want children in the future.
A typical round of IVF is 6 weeks but it can be done in 4 when needed.
Going through IVF is not a guarantee you will be able to have your own children, this is a lengthy and elaborate process all on its own and deserves a separate post.
There are some financial assistance programs for cancer patients going through IVF, however, it’s still very expensive and not covered by insurance.
9. If you can, choose a doctor’s office and hospital close to where you live.
This will be especially helpful if you’re driving to daily radiation sessions and frequent chemo appointments. Sitting in the car is the last thing you’ll want to do when you feel ill and tired.
10. Not all chemo causes you to lose your hair, but if your treatment includes a chemo regimen that causes hair loss, you can use Cold Caps to preserve it.
Cold Caps are insulated, helmet-looking things you hold in dry ice and wear all day on chemo-days. The purpose of them is to constrict the blood vessels to your scalp so the chemo doesn’t reach your hair follicles. You still won’t grow new hair during this time, but the quite literal brain freeze will help your existing hair not fall out as fast.
These are expensive and not covered by insurance because they’re not considered treatment of the actual cancer, however, I found keeping my hair significantly improved my quality of life.
11. Get physical therapy.
A doctor’s treatment ends once they’ve killed the cancer but you now have to live with this body. Specialized physical therapy can immensely improve your quality of life post-treatment.
After pelvic radiation and surgery, my hips and groin were really tight, and I was told that without regular dilation and stretching my vagina could shrink to as small as 2 inches. In the first few months after treatment, I saw a pelvic physical therapist once a week and felt huge improvements after every session. Regardless of the type of cancer, both chemo and radiation wreak havoc on your body. You’ll probably need to do some work to ease tension and pain.
12. Ask for a yearly PET scan post-treatment.
PET scans are not required, it’s difficult to get them approved by insurance, and they’re still really expensive when covered. Not all doctors automatically order them to confirm you’re clear after treatment, but doing this test will be reassuring that the cancer hasn’t returned. One per year in the first five years post-treatment, the time in which a recurrence is most likely to occur, is a good guideline to follow.
13. Don’t accept you medical bills as-is, and don’t immediately pay them off without calling the providers and insurance companies to double and triple-check the amounts.
Cancer treatment is extremely expensive. Sometimes hospitals and doctors offices make mistakes when submitting your claim to the insurance companies. You can save yourself thousands of dollars by making a simple call.
Sometimes they’re able to reduce the amount if you explain it’s a hardship, and if not, they can always put you on a payment plan. There is no interest charged on medical bills.