How my story begins: So what led to my diagnosis? I made a very un-glamorous visit to a walk-in medical clinic because I was having difficulty walking, due to pain. It felt like I had pulled something, but there was no explanation. I had to go to the walk-in clinic because I had recently moved across the country, and no doctors in my new city were accepting new patients. The doctor at the clinic noticed after seeing me that I also had really limited range of motion in my back and hips, so sent me for an x-ray. He suggested I follow up with him at his office. Let me be clear, this in itself is not a common practice. Most often the doctor at the walk-in clinic will tell you to just come back to the clinic if you do not have a primary physician.

The findings on the x-ray did not really point to why I had had this unusual pain. So when I visited the doctor at his office, he took the time to ask questions. Upon realizing I had gone some time without a Pap test, he asked me to book another appointment at his office to do one. Again, this is not a very common thing to happen when you are not even an actual patient of the doctor. When I returned for my Pap, he immediately could see concerning changes on the cervix and made a referral to a gynecologist without even waiting for the Pap results. I was fortunate to be seen by the gynecologist fairly quickly and a colposcopy was done. Within a few weeks I found out it was in fact invasive cancer. I've shared this story with multiple oncologists in the past several months, and I think we can all agree, this doctor from the walk-in clinic is the hero of my story. He took the time to ask questions and follow up on something that just did not seem right. He did not assume that the patient, me, was just being “a complainer.” He made a difference. As I had no obvious symptoms of this disease, it is likely that without this doctor, I would have further put off getting a Pap test until things got really, really, bad.

Life before my diagnosis: I will be celebrating my 50th birthday soon. My birthday also marks the one year anniversary since I was diagnosed with cervical cancer. My journey to diagnosis with advanced cervical cancer began much earlier though. Cervical cancer is generally thought to be a cancer that develops over many years. Typically women are diagnosed with abnormal cells (not invasive cancer) and treated for that long before it advances to invasive cancer.

I would like to share my story, because I think that my experience is not uncommon. I hope that by sharing, I can prevent others from going through what I went through.

As a young woman I had several abnormal pap smears. I was monitored at 6 month checks over a period of about two years. I was eventually referred for a colposcopy. I was told everything was “fine.” Around this time, I started having “normal” Pap test results. As far as I know, every Pap after that was normal...until it was discovered that I had invasive cancer about 25 years later.

I do want to make the point here: I realize now I was not well educated on what all those abnormal Pap tests meant all those years ago. I know this is shocking in our "instant information" age, but we did not have “Google” to guide us. I also feel like both my regular doctor and the gynecologist I was referred to did nothing to educate me about the risks. Perhaps they were trying to filter information to not cause extra worry. Perhaps they felt I was very young and not at real risk of getting cancer. Unfortunately, by not giving real information, I became lulled into a false sense of “that was just a blip, there is no cause for concern.” What I know now is that I was probably fighting an active HPV infection at that time, which was causing abnormal cell results. What I didn’t know was that keeping my immune system healthy (prevention), and following up with more regular Pap smears (monitoring cell changes) and HPV screenings may have resulted in a better outcome for me.

So what happened in that 25 years from the first colposcopy to the second colposcopy which revealed invasive cancer? Like many women, life became very busy. The busier it became, the less I was a priority. I was a working mother of three children. I had a lot of stress in my life. I was not looking after myself. For many years, I was very compliant, coming into my doctor once a year for a mini physical and a pap test. Then a “perfect storm” of things happened, and I was less regular in getting myself to the doctor for check ups.

One thing I want to say is that I think we are all responsible for making sure we look after ourselves. BUT sometimes when we “fail” to take care of ourselves, it’s not so much about “FAILING”, but more about outside factors SABOTAGING our success. How does a smart, responsible, naturally conscientious person go several years without a Pap test?

1) Lack of education. Not really understanding my risk factors.
2) Lack of a support system. Straight up, not taking care of myself because I was taking care of everything else in my world. If you can identify with this, you are also probably driving your immune system into the ground, increasing your risk factors, at the very time when you are probably skipping out on regular Pap tests.
3) Broken medical system and very poor patient care from my family doctor over a number of years. Why not just change doctors? I live in Canada, which means I had amazing care once I was diagnosed with cancer, but it also means that in many communities there is a shortage of doctors. You cannot just move to another doctor – trust me, I spent many hours trying to find a different doctor. While I do feel that very poor medical care was a contributing factor, I do have a medical hero in my story!
4) Too busy at work, with kids etc. and making them a priority and not myself.

My treatment: Once you get the diagnosis, it seems like it takes forever to find out what will happen next. While I am fortunate to live in a city with a cancer clinic, it does not have the ability to perform PET scans. Radical hysterectomies (this is the type of hysterectomy done for early stage cancer) are not performed here. I was booked for a PET scan and radical hysterectomy in another city, approximately 6 weeks after my diagnosis. Unfortunately, the PET scan and examination by the gynecological oncology team determined that I could not have surgery due to the size/location of my tumor. I went from Stage 1 to Stage 2b – which typically means you bypass the surgical option and go straight to chemotherapy and radiation therapy. Fortunately, most of this treatment I was able to have in my own city. I had the fairly standard treatment of 25 external daily radiation, 5 doses of weekly chemotherapy, and 4 internal radiation (brachytherapy) treatments. For the most part treatment was not as bad as I feared.

What was most difficult for me: The recovery from treatment has been slow, hard and frustrating. Some of the long term effects are challenging. Because I tolerated treatment fairly well, I do not think I was really mentally prepared for so many months of recovery.

Where I am today: I am grateful for many things. Gratitude becomes so much more meaningful after going through this experience! My extended family has provided so much support, for which I cannot express enough gratitude for. I am grateful to have more time with my children. I am very grateful for the doctors, staff and volunteers at the cancer clinic who have taken good care of me. I am grateful for my new primary care physician who proved to me that there are doctors out there who “do the right thing”.

I try not to worry too much about recurrence, but of course that comes with the territory. I am working on doing a better job of caring for myself and changing things in my life that sabotage my well-being and ability to care for myself.