Long Reads

Smear tests: “What a rare cervical cancer diagnosis during lockdown taught me about listening to my body”

With the news that there could be more than 3,500 avoidable cancer deaths in England in the next five years as a result of the coronavirus pandemic, V Varilly’s rare cervical cancer diagnosis reminds us why it is so important to listen to your body and push for testing.

Those close to me will know I suffer from “bad and long period pains”. I don’t mean waves of sickness and headaches; I mean being in so much pain that I struggle to leave my bed. 

I usually dial it down massively, mainly because it’s boring and uncomfortable as hell – unbelievable, even, to some. But also because there still remains this weird stigma around mentioning it, especially in a work setting.

After doing a lot of research into what I was experiencing, I self-diagnosed myself with endometriosis. The symptoms fit and I spoke to doctors, but they always sent me home with the same extra strong pain killers. 

The cycle would just continue.

However, I had a particularly bad period in February this year – which I can only describe as feeling like “the vagina devil” that showed no mercy. After that ordeal, I booked another appointment to see the doctor, hoping I wouldn’t be sent away with yet more painkillers. 

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My GP had originally said I couldn’t get my next smear until it was due at the end of year, but I was adamant that I needed more help. She conceded that I may have endometriosis and advised me to get a colposcopy (a procedure that uses a speculum to look at the cervix). Usually colposcopies are conducted when you receive abnormal smear tests, but as all my smear tests came back clear in the past, she assured me that it was the first step to move on the process.

As you’d expect, the colposcopy was awkward and uncomfortable, but I knew that in doing this I could finally get referred to a specialist. I conquered a maths quiz they’d stuck to the ceiling to distract women during the procedure, and it was done. I thought nothing of it from then as I knew my smears were always clear, and I had never experienced any other issues in that region, bar the bad period pain.

Weeks later, the whole world went into lockdown. People started to navigate a new normal. For me, life was weird but manageable. That soon changed when I received a letter asking if I would come to the hospital “accompanied by one person” to review my colposcopy results.

By this point, I was more concerned about going into a hospital because of coronavirus, as opposed to discussing any results. I even suggested to my husband that I miss the appointment – nothing was bigger than Covid-19, right?

In the end, we drove to the hospital and, after a long wait, I was told the unimaginable: “Your results came back, you have cervical cancer”.

Cliché as it is, I stopped listening from that moment: my whole world went black, I really felt the physical pain of heartbreak. I was now faced with the other big C and I felt lost.

With no way of anyone knowing the staging of the disease, I couldn’t determine if I was at death’s door or not; it was devastating, my husband was silent with shock. They kept using words like “radical hysterectomy” – this stayed with me as, although I’m not ready for kids, the thought of that choice being taken away from me without my consent just tortured me.

Smear tests.
Smear tests: V Varilly was diagnosed with a rare cervical cancer during lockdown.

As I regained my composure, something just did not make sense to me. How could I possibly have cervical cancer when my smear tests came back clear?

That’s when the doctor explained to me that I had a rarer form called Adenocarcinoma. It develops from a cell found in the cervical canal (the endocervix) and occurs in only 8-10% of women diagnosed. Squamous is another, more common, type of cervical cancer, which develops from another type of cell that covers the outside of the cervix at the top of the vagina. This occurs in around 70-80% of women who are diagnosed.

Adenocarcinoma is much harder to detect via a smear because it develops within the cervical canal rather than the outside of the cervix. The doctors I spoke with have dismissed any link to my painful period. Ultimately, I had cervical cancer despite showing no symptoms and having clear smear tests.

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I couldn’t bring myself to tell some of my closest friends, because everyone was going through something so significant during lockdown. In the end I made the decision to tell a small handful, including my family back in Manchester. Telling my identical twin sister was by far the worst as I knew she would carry the exact same devastation and fear I did. Without hesitation she exclaimed she would shave her head in solidarity and carry my children if it came to it.

After getting my diagnosis I had a CT and MRI scan to determine whether the disease had spread. Between that time, I had been crying on-and-off while working as normal, constantly wondering how I’d become the lead in the ultimate shitshow. I kept my cool, but panicked for a minute during the MRI scan when Smooth FM cruelly played Candle In The Wind by Elton John. 

Incredibly, my scans confirmed stage one cancer, with no need for any chemo or radiotherapy. I “simply” needed to undergo a large loop excision of the transformation zone (LLETZ) procedure, where they would cut away the affected area of tissue. I was warned that, even if the procedure was successful, I may have future problems carrying children, but I was just happy with knowing that I could get through this with my womb intact. In the end I had two of these procedures, as the first wasn’t completely successful, then I was told to hang tight for next steps.

The next couple of weeks were a blur. I just felt trapped with my own thoughts, as the pandemic continued to devastate the world. Although the NHS was phenomenal, lockdown made it really difficult to reach out to anyone to get extra support, I still had so many questions. However, my amazing family and friends kept me distracted and away from Google until the unbelievable happened.

One of the surgeons who operated on me called me to say the second operation was successful and my cervical cancer nightmare was over. It’s a conversation I still continue to replay in my head as I come to terms with the fact that NHS staff are indeed heroes, and the realisation that yes, my body and mind are warriors.

I’d like to say to anyone reading this that, although my cervical cancer experience is less common, it can and does happen. Push for more smears, check ins, and general chats with professionals if something feels awry. Talk openly about your cervical experiences, including your periods and the things that may not feel like obvious “symptoms” – the general pain, spotting, mood swings and anything in between.

It’s not ugly, gross or embarrassing; it’s natural and necessary and makes us who we are. Please don’t take your gut instinct for granted. No one knows your mind and body like you do so listen up, they deserve to be heard.

Tracie Miles, a gynae cancer nurse specialist from The Eve Appeal, shares her advice for anyone concerned about cervical cancer:

Can a smear test detect Adenocarcinoma? 

Adenocarcinoma can be picked up on smears but if it’s higher up the cervical canal, it may not. However, smears are still very, very effective and will pick up the majority of cases.

How do I talk to my GP about cervical cancer concerns?

Arm yourself with information, The Eve Appeal have top tips and advice around visiting your doctor so you can avoid that rabbit in the headlights moment. It’s great to come armed with a script because that way they can help you. 

Sometimes the GP feels like they need permission to examine you: it’s a two way street, you need to communicate and stay adamant if you notice anything, like irregular bleeding (this could be a brown or pink discharge).

You can find more information on The Eve Appeal website. You can also find out how to book a cervical screening via the NHS website.

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Images: V Rudravajhala