Living with advanced cervical cancer: Finding positivity

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 >

Angela's Story

"I was diagnosed with stage 4b incurable cancer of the cervix and given, on average, a 2 year life expectancy, 6 years ago. I want to share my story because having cancer doesn’t mean you have to give up or stop having fun. I want to help others feel positive. 

When I was 63 I could feel some lumps in my groin as I  had lost some weight so my Doctor sent me for an ultrasound. I’d always been for regular screening, my last smear test was at age 60 and always been clear. After the ultrasound I had  a blood test which showed my CA125 was over 500 – which can be a sign of ovarian cancer. It didn’t click that I could have cancer as I had no symptoms, apart from my groin, and felt absolutely fine. I had a lymph node biopsy which found cancer but it took more tests to work out where the primary source was. I was diagnosed with stage 4b cervical cancer that had spread through my lymph system to my neck.

I started chemotherapy straight away, a combination of Avastin, Cisplatin, Paxitacil for 5 sessions. I think I was lucky as I didn’t suffer from nausea but my taste buds changed and was very tired but carried on working part time.

Living on my own was tricky at times but my family and friends helped.

They’ve all been amazing, my son helped me shave my hair when it started to fall out which my grandchildren thought looked very funny!. I didn’t want to go through it alone so have been very open from the start. The more you talk about it the more you hear other people’s experiences and the positives as well as the negatives. 

I had 5 sessions of brachytherapy too which really wasn’t as bad as I thought. The hardest part was having to wee after – some days I was there 6 hours after trying to get my bladder to work!

After the 5 sessions a scan showed my cancer had decreased and it was decided I would stay on Avastin every 3 weeks. This was extended to every 4 to give me a bit more time to recover. I had over 65 sessions in the end which is really unusual and I found a Facebook group of people on it for a long time which was helpful.

Again I was lucky and a mobile unit was set up in a Tesco car park near my flat which saved a 40 min journey. It was far more relaxing and personal so if you have the opportunity – take it.

Avastin felt like my life jacket in a sea of cancer. It had side effects, it made my joints ache and reduced my mobility but I could still enjoy life. Eventually only one area of any significance was showing on my PET scans and I had 5 sessions of very targeted SABR (Stereotactic Ablative Radiotherapy).

It was successful in treating the cancer, but the next scan a brand new area appeared in my groin area.

I had to stop Avastin. That was one of the times I really struggled, I felt like I’d lost my life jacket and was treading water without it. My amazing Trainer said no, think about it like you’re swimming to shore now, you have a new treatment pathway. Again I had an option as the cancer was in a different area so I had another 5 sessions of SABR therapy on my groin.

Initially in my scans, I was told because of the spread of the cancer I lit up like a Christmas tree but my CT scan in June this year said I was NED. It was difficult to get my head round being NED, cancer had taken up 6 years of my life and I was living with apprehension about my next appointment. Unfortunately life decided to throw me another curve ball and after my latest scan they have discovered cancer cells in my lungs and groin. I’m waiting for my next scan to plan treatment and see how active they are.

I found Jo’s once I got my NED result.

I was ok just getting on with it before then but I’m at a point where I want to help others feel positive. I have good days and bad days but I’m doing well. I have a personal trainer twice a week who makes sure I’m strengthening and keeping the mobility going and regular reflexology which I think has kept my body able to fight and helped my mental health. Being told it’s incurable and stage 4 is a lot to take onboard. I used to joke about my funeral but now I don’t and I prefer to focus on looking forward. At the moment I’m looking forward to a cruise before my next scan.

People say I’m positive and I think there’s no point in being anything else. I feel very lucky with the treatment and how my body has coped with it. My friend said never give up, because the longer you live there might be a cure round the corner. That’s the key for me."

 

Thank you to Angela for sharing her story.

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