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Living with advanced cervical cancer: We are people, not numbers

Posted on: Wednesday, 19th October 2022 by An anonymous member of our community
This is the first in our series of 3 blogs sharing experiences of living an advanced diagnosis. Every experience is as unique as the person going through it. It also shines a light on the difficulties faced in accessing new treatments and our work around access to Pembromizulab, a new treatment being considered for use in England and Scotland for some patients with advanced cancer. Find out more >

* This blog post discusses living with an advanced cancer diagnosis. Take care while reading, and contact our support services if you want to talk. *

This blog is from a member of our community who wanted to share her experience but chose to remain anonymous

I was diagnosed with stage 4b cervical cancer on 13 June 2022. I thought my life as I knew it was over. I had never missed a cervical screening. I had a LLETZ ten years before after my very first colposcopy showed dyskaryosis; but after that, all my results were normal. In summer 2021, I started experiencing a lot of bleeding during intercourse, but my latest cervical screening found only mild dyskaryosis. Not content with I self-referred to a private gynaecologistwho, after several investigations including an STD check and pelvic ultrasound, saw nothing wrong with me. She referred me back via the NHS for a colposcopy and biopsy. The latter came back reporting no cancer but the gynae confirmed my cervix did not look normal and I was still having bleeds, so I was prescribed another LLETZ.  It was only then  that the cancer was found. I was initially staged 1b2 and was then referred to the Royal Marsden, where, following MRI/PET/CT scans, the true stage of disease was revealed.  

The day I met with my oncologist to discuss the scans was both the worst and (possibly) best day of my life.

Worst because no one, I least of all, was expecting a stage 4 diagnosis. The cancer was no longer localized and had spread to my pelvic and supraclavical lymph nodes, confirming metastatic disease. It was not even a recurrence – it was my first cervical cancer diagnosis, and I went straight to stage 4. The oncologist confirmed I was incurable. “Devastated” is too tame a word to describe how I felt. After the appointment, I had to catch a train to Paris because I was working a conference the next day. I tried to compartmentalise my illness from my “normal” life which of course was impossible. When I arrived at my hotel, I was close to breaking down and called my sisters, who were the first to hear the news.  

If I choose to find the silver lining, I can try to view that first oncologist meeting as the best day because I was given a glimmer of hope. At the appointment, the doctor spoke to me about a new-to-advanced/metastatic/recurrent cervical cancer drug, pembrolizumab, that was being administered to Royal Marsden patients on compassionate basis as agreed with the NHS. If I qualified, I would be one of a very, very small number of women receiving this novel treatment for first-line cervical cancer treatment in the UK. I had to have my tumour tested for PDL-1 to see if I qualified (which I did) and began treatment on 7 July.  

After three infusions including carboplatin, paclitaxel and bevacizumab alongside pembrolizumab, I was given a midpoint PET scan which showed a “complete metabolic response” – the very best possible outcome. There was no cancer activity visible, and my oncologist is confident that the “chemo cocktail” including pembrolizumab is helping deliver good results. I went from an initial diagnosis that included extensive lymphadenopathy, to having zero hotspots visible on my midway PET. As I near the finish line of this treatment, I am cautiously optimistic and beginning to think about the future again after so many months of worry, fear and utter despair.

Pembrolizumab gives me hope that I can reclaim my life.   

When I tell other women with stage 4 cervical cancer about being on pembrolizumab, all have said it was not made available to them but they wished it were. I sometimes feel guilty for having been “at the right place, at the right time” because I certainly did nothing to set me apart from these women to get access. Most of them wondered if I had gone the private route, which I hadn’t and no one in the UK should have to, either.  I am very grateful to the Royal Marsden and the NHS for allowing me to receive this treatment, but why can’t my friends?

We need to do far more for advanced cervical cancer patients by accelerating approval of, and access to, innovative treatments. It is positive that pembrolizumab is being considered for use by NICE in England and in Scotland, but it frightens me that it may not be accepted. 

Where does that leave other women like me? 

Yes, early detection via cervical screening is important and can help many women. But there are also many women who are misdiagnosed, get inaccurate results, have rare or aggressive cancers, and have relapses. It isn’t so common to start out with a lower stage diagnosis then have a  recurrence requiring much more aggressive treatment but it happens, and it certainly doesn’t feel like a ’rare’ scenario to me. Those of us living with advanced cervical cancer are too often forgotten or overlooked, in a world that, misguidedly, believes that screening and vaccines have already eradicated this awful disease.

It would be a far, far better world and a fairer society if high uptake ofpreventative screening, high uptake of thevaccine in both boys and girls, AND multiple lines of treatment for advanced disease were the norm. We shouldn’t have to plead for our lives, when proven, new medicines are right there, and even more making their way through clinical trials. But for the advanced disease group, new treatments are incredibly rare, which means our options are slim. We must speed up access when a successful drug is found. In the EU, pembrolizumab is already available and just this week, cemiplimab for second-line cervical cancer treatment was given strong endorsement towards approval. In the UK, we are seriously, shamefully lagging in the effort to approve life-saving drugs, which is soul-crushing for those living with advanced disease, as well as the loved ones of the many wonderful women we have already lost to cervical cancer. We deserve so much more. Do we need more women dying for people to take notice? The answer is resoundingly, NO. The only solution is action, borne out of duty, determination and compassion.  

Thank you to the author for sharing this story.

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Categories: cervical cancer Story