How my story begins: I have had intermittent abnormal Pap smears since around 2009 when I was diagnosed with high risk HPV. I have had a couple colposcopies with biopsies that never showed anything more than CIN 1. In the fall of 2016, my Pap smear again came back abnormal, which at this point, I didn't really think twice about. I had biopsies that showed CIN 2 and CIN 3 this time. This still didn't really get to me because I was going to have a LEEP to get rid of the CIN 2/3 and hopefully would be done with this finally! I also know HPV can be present for 10-20 years before a cancer would develop. I had the LEEP, which did not go as well as hoped due to a lot of bleeding. The pathology report came back as extensive CIN 2/3, but I was told there were clean margins...in other words, the doctor had gotten all of it! I was relieved and was able to complete focus on my upcoming wedding! My doctor did want to repeat the pap in 6 months instead of one year because she was concerned with all the bleeding during the procedure. In May 2017, my Pap was abnormal (as expected since it had only been 6 months since the procedure!) and a colposcopy with biopsies showed CIN 2/3 again....I was puzzled as was my gynecologist. I saw a gyn oncologist where I work, who performed three more cervical biopsies of a suspicious lesion not easily seen on my posterior cervix. On June 11, 2017, I got the news that I had invasive squamous cell carcinoma.
Life before my diagnosis: Prior to my diagnosis, life was going full speed ahead with so many wonderful things. I was planning a beautiful destination wedding with my fiance which took place in Tulum, Mexico in February 2017. We couldn't have asked for a more amazing experience! We then moved into a house in our desired neighborhood and couldn't have been more thankful. I was in a good place with my career (as a healthcare provider in oncology of all things). We were also hoping to start having children within the next year or two because I was already 32 when we got married, and we wanted at least two kids.
How I felt after diagnosis: After my diagnosis, I was partly surprised and partly just wanting to move forward with treatment so I could be done with it as quickly as possible. All in a one week period following my diagnosis, I met with onco fertility, had an MRI for surgery planning and a PET/CT. Unfortunately, it looked like I had a couple of enlarged pelvic lymph nodes, so I had a biopsy. The biopsy came back benign. We were moving forward with planning a radical trachelectomy and sentinel lymph node biopsy (versus pelvic node dissection) as we wanted to try to preserve my fertility and not have to do a hysterectomy. I knew that if I had high risk features at surgery, I would need chemo/radiation afterwards, but this would give us about 6 weeks before chemo/radiation would start to do egg preservation. I went for my pre-op appointment about 2.5 weeks after my diagnosis and the cancer had grown from 3 cm to 6 cm...doubled in size. Nobody could explain it because it was just a "typical" squamous cell carcinoma. I was then told surgery was off the table...I needed chemo and radiation.
Telling my family and friends: Telling my mom was probably the hardest part because I knew how upset she would be. She is a two-time cancer survivor herself (breast and thyroid). Telling my husband and my immediate family was difficult, but at the same time, it wasn't because I knew how much support I had from them. Telling friends and coworkers was helpful in a way, because I received so much added support and prayers.
My treatment: Since surgery was off the table because my cancer was growing so quickly, I had to start with chemo and radiation as soon as possible...in one week. Both my radiation oncologist and my gyn onc recommended that freezing my eggs was not a smart option at this point because I didn't have two weeks for an egg retrieval cycle given how fast my cancer was growing. (Of note, my pelvic lymph nodes, which were benign on biopsy, continued to grow as seen on the CT scan for my radiation simulation.) My husband and I also agreed that although we wanted so much to have biologic children, we didn't want to take the chance of my cancer growing or spreading even more. I had a bilateral ovarian transposition on July 10, 2017, which seemed to be successful. I knew there was a 50/50 chance though that my ovaries still would fail. I was hopeful, though, that mine had been successful, and at the very least, I would retain some ovarian function so I wouldn't go into menopause at 32 years old, even if the eggs/follicles didn't survive the radiation.
I completed a total of 5.5 weeks of external radiation, a total of 7 doses of Cisplatin and two brachytherapy radiation treatments that lasted about 48 hours each and required a hospital admission each time. The chemo-radiation was tolerable. I did better than I thought I would, and I continued to work intermittently throughout. The brachytherapy treatments were a nightmare for me mentally. To lay almost completely flat in bed for 48 hours at a time, to not really sleep much for 48 hours, to not be able to move yourself without the nurses rolling you off your back every now and then for a few seconds, to not get comfortable despite the pain pump and constant pain medicine, and to feel isolated being in a lead-lined room and having visitors leave every hour for 10 minutes at a time is rough. But I survived, and fortunately, had an amazing response to treatment.
How I felt after treatment: The first couple of days after I completed my treatment were difficult emotionally. I started actually processing what I just went through and what happened to my body. I also had a lot of anger with my gynecologist that had been following me closely for so many years because I felt like she did something wrong. As time went on and as my body recovered, I was able to fully process what happened and what I went through. I am incredibly fortunate to only have a few long term side effects from treatment (so far) including ringing in my ears from the chemo (which isn't common with a low dose of cisplatin), and physical changes from radiation which make sex not as enjoyable anymore. I'm not a fan of the dilator, but we do what we have to do! The most difficult thing I am dealing with after treatment is that I am now post-menopausal. One week after my last brachytherapy, my very last treatment, I started having hot flashes. Between hot flashes, no periods since starting chemo, vaginal dryness, irritability, insomnia, I figured that menopause was the likely scenario. My doctors checked some lab work, and it showed that I was post-menopausal...at the age of 32 and despite our best efforts. I am now on birth control for hormones, so I feel better overall, but still have some effects of menopause.
What was most difficult for me: To my surprise, the most difficult thing about all of this has been losing my fertility. I never dreamed how much of an impact that would have on me. I think I can say that is the most difficult thing for me because I had such a good outcome with treatment and my cancer is gone. Six months after my treatment has been completed, it is something I continue to think about and struggle to accept every day. I constantly go back and think about what I could have done differently- not because I can change anything at this point, but because I want to be able to educate and advocate for my patients and help them in making timely choices about their fertility options before they start their treatment.
I wish I had been more aggressive about pursuing egg preservation the day I met with the fertility team after my diagnosis. I would have done it right away, despite the costs and whether or not I would ever need them or not- I would have done it "just in case," as insurance. Alternatively, I would have asked to see the fertility team one more time after I found out I needed chemo/radiation, just to see if there was any other viable option out there. But I didn't and it's a done deal. So I continue to work every day on figuring out how to accept this. I do look forward to one day starting a family through adoption or using an egg donor and surrogate.
Where I am today: I'm still mentally and physically adjusting to my "new normal"- to the long term effects from treatment, to menopause, to infertility and grief, to figuring out how best to take care of myself, to understanding the cancer could come back, and to figuring out what I want to do with this experience. I have come a long way over the past six months since treatment finished. Most things in my life are back to normal, thank goodness, but there are also other things that will take more time. It's up to me to be patient.