It is with great sadness that we must announce the closure of Jo's Cervical Cancer Trust, effective immediately Read More

Living with advanced cervical cancer: Access to new treatments

Posted on: Thursday, 20th October 2022 by An anonymous member of our community
This is the second 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 is from a member of our community who wanted to share her experience but chose to remain anonymous

“Go for your cervical screening and you’ll be fine”, that’s what everyone says. My case shows that isn’t always true. Screening is a fantastic thing and of course we should encourage women to go, but it is important that those of us with cancer, and especially advanced cervical cancer, don’t get ignored. Messages about prevention can result in a perception of blame for those of us who have cancers that have been missed or gone undetected. We may be a minority, but we are still an inescapable fact with this disease. 

When I was first diagnosed, I was terrified.

I had no idea what it meant and knew little about the disease. I am not one to leap to conclusions but the symptoms I had been having felt different. My GP didn’t know about adenocarcinoma so initially said it wouldn’t be cancer because I had clear screening results. This was the first time the ‘C’ word was used. The symptoms persisted and I eventually made an urgent appointment privately with a gynaecologist. There was as long wait for further investigations before I was given a diagnosis, adenocarcinoma stage 2B, and a treatment plan.

Starting chemoradiation treatment, I felt a huge sense of relief. I was actually doing something at last. I had 25 rounds of external radiotherapy, 3 cycles of cisplatin and 3 rounds of brachytherapy. I found the treatment very doable overall, although it was mentally and physically tiring going to hospital nearly every day - though there was nowhere else I would rather have been!  

After treatment we went straight into the first COVID lockdown which, for the clinically vulnerable like myself, meant staying at home for 3 months. I found it mentally tough, although I bounced back physically quite quickly. I appreciated how friends and family felt about the restrictions but felt as though it paled in comparison to my cancer diagnosis and all that came with it. I started weekly phone sessions with a clinical psychologist. She helped me to put a slightly different perspective on things and it certainly felt good to be able to vent!  

My post-treatment scans showed an area of concern which they thought was scarring and subsequent scans confirmed a complete response. Sadly however, 15 months later, I was diagnosed with a recurrence. I was in complete shock. I felt so fit, active, and well and had been living as close to normal a life as possible. I felt utterly helpless and defeated.  

A week later I returned to the consultant’s office but left with a glimmer of hope.

I was to have 6 rounds of the mix of Carboplatin, Paclitaxel and Avastin (Bevacizumab), followed by ‘maintenance’ Avastin. I was told I would lose my hair from the chemo, but felt strangely fine with that. This surprised me as my hair had been my best feature, but I prepared myself by buying a wig and practiced wearing it before I lost my hair. I had a strong feeling that the only way I was going to cope with this was to stay positive, hopeful, and upbeat, only read the good outcomes and above all, avoid doom-scrolling on the internet! I told my consultant that I did not want a prognosis or statistics. I didn’t want to be guided by negative words or thoughts. We are all individuals and I was not about to be dismissed as a statistic.   

I let my lovely CNS know that this was how I was planning to cope and she approved. I was scared but also hopeful, and very glad to be in treatment. I kept myself busy, worked and kept exercising and eating sensibly. The team said that keeping active would help me with the side effects and I feel strongly that things would have been worse for me if I hadn’t – both physically and psychologically. Sure, I felt a bit tired and achy on some days, but otherwise I kept life as normal as possible and exercised regularly just as before. It was good to have a 3 week break between each cycle, as that gave you plenty of time to have a few off-days but mostly good days.

I made sure to keep a balance between ‘cancer land’ and my previous life.

I was very fortunate to have had an excellent response to the chemo mix I was put on. I showed a ‘complete metabolic response' by cycle 5 and was given the choice to continue with my 6th and final cycle or to carry on with Avastin (Bevacizumab) on its own as a maintenance treatment. My immune system was very compromised by chemo at this point so I chose Avastin only. By the time it came to my second round, I was told Avastin was only funded through the NHS when given alongside the Carbo & Taxol chemotherapy in cervical cancer and not as a single-use maintenance agent for cervical cancer. After several upsetting discussions, I was told the only way I would be able to have it was to continue with the other 2 chemotherapy drugs, albeit at a lower dose. My consultant agreed with me that this could potentially do more harm than good, as I had suffered from the chemotherapy drugs themselves. My options were either to include the chemo or stop treatment altogether. I self-funded my next round of Avastin by using the private healthcare services in the hospital. That one cycle cost me nearly £4,000.  

Like many of us in this boat, I spend a lot of time researching and reading stories and information out there to keep on top of what’s available treatment-wise and be prepared to shout for it when needed. One thing no one talks about is the huge discrepancy as to what is available across different parts of the UK for advanced cervical cancer. We often have to advocate loudly and forcefully ourselves. At our most vulnerable, a huge amount of time and energy is used this way and, on top of everything else, the financial burden can sometimes be crippling.  

I have been fortunate enough to have been able to continue with Avastin by a special arrangement. It’s every 3 weeks as before, but a fraction of the infusion time and with no unpleasant side effects for me. The idea that those with private health insurance, or the luck to access arrangements like this, have so much more available to them is never something I would have dreamt possible. I assumed that when we were at our most sick and vulnerable, the NHS would give us the very best of care that was available. 

There is so much inequality in access to treatments.

Many on our side have ended up on trial after trial. Some are left so ill it is hard to tell where the treatment ends and the cancer begins. The addition of Pembromizulab has been a very long time coming, but it worries me that it may not be considered for use wherever, and at whatever stage, needed and that lack of funding might remain a barrier. Cemiplimab is another immunotherapy drug that has had some success, but again, whether you are lucky enough to be eligible for it or have a medical team that can acquire it for you is another question. There are other drugs in the pipeline that have shown good results, but again, could we get them if we needed it? Unlikely. It is heart-breaking to see us written off as statistics when it comes to new treatments being considered for use.

I was really reluctant to join the Jo’s Advanced Cancer Forum. I was too worried about what I might see. In fact, it wasn’t until I was over halfway through my chemo treatment that I plucked up the courage to do so, and I’m so glad I did. We share the good days, the hard days, and there’s always someone to listen and share their experiences. One thing I found really difficult to deal with from the start with my diagnosis was other people’s reactions, even those close to me. There is a common feeling amongst well-meaning people of trying hard to be supportive but getting it wrong, which can sometimes lead to awkward conversations or even an avoidance of the subject.

I immediately found a group on the Forum that I could talk to and who just ‘got it’. I felt less alone. 

At the moment, I feel as well as I ever have and live a normal, active life. I do everything I can to look after myself and my health in the best way I know how. I have had several trips both here and abroad and enjoyed every minute. I probably tend to be a bit more impulsive and have more of a ‘why not?’ approach. You may find it difficult to plan the way you used to (and I love planning!) but being more spontaneous can be a lot of fun too. Yes - this diagnosis will change your life and it is certainly mentally challenging as well as physically, but there are some positives; you take less for granted and appreciate the small pleasures in life much more. People can surprise you with their care and kindness, and you can make some real friends.

Life can still be good.

Have hope."

Thank you to the author for sharing this story.

If you have had a cervical cancer diagnosis, we're here for you. Here's how we can support you >

Categories: cervical cancer Story