Nadia’s Journey
"Symptoms of ovarian cancer are so vague, it’s so important to raise awareness so that people know what to look out for and that this is something which can affect younger people too. Catching ovarian cancer early is so important, as it is for all cancers. Catching cancer early can genuinely save lives."
I’d had a few doctors’ appointments because of pain I was experiencing in my side and ended up going for an ultrasound to get this checked out but nothing was found. In hindsight, this was probably not the right sort of scan to pick up what was going on in my body.
I started seeing a nutritionist because I was suffering from bloating and couldn’t understand why. I was fit and healthy and didn’t eat lots of carbs. She did various tests and I went gluten-free for a while to see if this made any difference. I thought perhaps I had IBS or something similar.
All the blood tests I had were coming back fine. But at that time, I hadn’t had the CA125 test. (This blood test checks for raised levels of a protein called CA125. It helps diagnose or monitor ovarian, fallopian tube or primary peritoneal cancer.)
I went on holiday in November (2022) and I noticed the bloating even more so – I think from being in a bikini on the beach and being more aware of my body. It almost felt like there was a lump where I was bloated, I could feel something hard on my right side. When I got home from my holiday I went to see another doctor, a lady doctor this time, and at first she thought I was pregnant. I did a pregnancy test and she examined me further and sent me for the CA125 blood test. When the results came through she called me to say I wasn’t pregnant but my bloods were showing abnormal cells and she wanted to send me for some additional scans.
After these scans, I was then referred to Kathy Gillies, a gynaecologist in Jersey. I’ve got quite a small frame, so it was hard to tell from the scans I’d had – what was going on.
John Butler, (gynaecological surgeon at The Royal Marsden), just happened to be coming over to Jersey around the time I’d had my scans which was quite spooky timing. Kathy was able to get John to have a look at my scans and he knew straight away – it was ovarian cancer. I had a 15cm tumour and the cancer had started in my right ovary. John could also tell that the cancer had spread.
When I was told my diagnosis, I couldn’t even speak – I was so shocked. I’ve always been such a healthy person; I couldn’t believe this news. I wasn’t aware of ovarian cancer at all and never thought this would be something that I’d have to deal with, especially at such a young age.
Looking back now that I have more awareness about the symptoms of ovarian cancer, it’s easier to tell which ones I had, which, at the time – I would never have associated with such a serious diagnosis. Symptoms like acid reflux, bloating, getting full quickly from eating. I also went through a period of time before my diagnosis where my hair was falling out and I felt very fatigued all the time.
I was diagnosed with stage 4 ovarian cancer at the end of November 2022 and immediately put under the care of The Royal Marsden. On 19th December 2022, I went in for surgery with John Butler to remove the cancer. From the very first moment I met him, John took me under his wing.
Because of the extent of the cancer spread, I had to undergo quite an intense and long surgery where they took so much out - the pelvic tumour, my colon, part of my liver, my spleen – and I had a total hysterectomy and liver resection. I woke up to the news that I’d also had an ileostomy, (a procedure to bring the end of your small bowel to the outside of your tummy to form a stoma). This ileostomy was completely unexpected as my scans hadn’t shown anything suspicious in my bowel beforehand. No one had realised how much the cancer had spread, until they started doing the surgery. The surgery lasted for 11 hours.
John did such an incredible job, he got rid of all the cancer that he could physically see. I also had a second surgeon who was operating on me at the same time. The surgery, thankfully, was a big success. I felt so grateful for John and to be told this as it had all been so close with the timings – I was told, had my diagnosis and surgery been even two weeks later, I may not have been here. It was that close. I had survived and I was so grateful.
Recovery from surgery was rocky, I was in Intensive Care (the Critical Care Unit) at The Royal Marsden for a few days and had to go through a few blood transfusions. It was intense but I’m so grateful to have got through it.
My first post-surgery scan showed that I had two big blood clots on my lungs so I was put onto blood thinners for a few months to get rid of these. I was in hospital over Christmas, including Christmas Day, whilst I recovered from surgery.
Once I’d recovered from surgery, I had to go through six cycles of chemotherapy back at home in Jersey – carboplatin and paclitaxel. They call it the power-duo for ovarian cancer! I started this in January last year (2023) and it finished around May time. This chemo was to ‘mop up’ any specks of cancer that might have been left from surgery that we couldn’t see.
I had quite a few complications during chemo because of the surgery I’d had. Things like scar tissue and the issues with my stoma and bowel blockages meant I was in and out of A&E during this time. I had excruciating bowel cramp and had to go on a liquid diet for two months. This felt like another spanner in the works. I was really struggling with my weight and at one point they thought I might have to stop treatment as I was losing so much weight. Thankfully this didn’t happen, and I managed to get by. Chemo is already so hard, being on a liquid diet for part of this made everything so much more tough. It was a really difficult period, really scary; at times I didn’t think I would get through chemo.
I did try the cold cap during chemotherapy to try and keep my hair and I think it made a difference for a while but I’ve got quite a small head and it was tricky to get the cap to fit properly. At the end of my second chemo when my hair started falling out, I just embraced it and shaved all my hair off. I didn’t wear wigs much and just embraced the bald look – it didn’t really bother me. My hair was curly before but since it’s started growing back, it’s even curlier, thicker and stronger – like corkscrew hair!
I finished chemo in May and things have started to improve since then, although I did have to undergo another procedure earlier this year.
Because of the scar tissue, part of my bowel ended up getting stuck on my pelvis which started to cause issues with my stoma. I had to go on liquid nutrition as my bowel stopped working. I was back at The Royal Marsden as I needed to have another procedure to fix these issues with my stoma. Living in Jersey, I spend a lot of time on the beach, especially during the summer, and having a stoma doesn’t impact that at all. I’m still able to live an active lifestyle following my surgery.
The scar tissue is also causing problems with my kidneys now which they’ve called a ‘plumbing issue’ as they’re struggling to drain properly. I’m now under the Urology team at The Royal Marsden too. I’ve got stents in my kidneys to help them to drain and I’ve recently just had a procedure to swap the stents over – so they’ve gone from plastic to metallic stents – as these are more durable against the pressure of the scar tissue.
I’m so pleased with the outcome of everything now. When I first came out of my big surgery I did lose my confidence slightly and wasn’t sure how I was going to cope with having a stoma but I feel like I’ve adapted to everything quite well. The awareness and acceptance around having a stoma is so much better now too.
Having a hysterectomy at 27 years old and knowing this would mean I couldn’t have children in the future was a really hard pill to swallow. I hadn’t really thought about it properly, but the decision was out of my hands now, it had been made for me. Now that some time has passed since my surgery, I’ve accepted this a bit more and I know there are still other ways that I can be a mum. There is always adoption and other options out there for me.
I previously worked in Marketing – doing tourism marketing for Jersey which I really enjoyed. I finished at this job around the time of my diagnosis, so didn’t end up working my notice period as I was signed off sick. Right now, I’m taking some time out and focusing on my healing. Now that the issues with my stoma have been fixed, I’ve been doing a lot of travelling where I can in-between procedures and relaxing.
I’m keen to get into a job in the health industry, potentially around holistic wellness – as a way to help other people who are going through a difficult time. Throughout everything I’ve experienced in the last two years, I’ve built up such an amazing wellness team around me with nutritionists, homeopaths, acupuncturists, personal trainers and physios. I’d love to be in a position where I can help other people.
Going through an experience like this just makes you feel so grateful, it makes you realise what’s really important. You need to make the most of every moment. It sounds crazy but looking back, I actually feel grateful for what I’ve been through in the last two years as it’s set me on a new path and made me re-evaluate things; I feel that I have more balance in my life now. Before my diagnosis, I think I was doing too much, putting my body under such stress, working late all the time, trying to keep up with social events etc. I’ve learnt to slow down and listen to my body now.
During my last procedure at the hospital, they did some biopsies and unfortunately these showed that there are still little bits of cancer there, these showed up on a microscopic level so they’re very small, but the teams will be keeping a close eye on me.
I’ve started to have appointments with Professor Susana Banerjee at The Royal Marsden now who is amazing. The type of low-grade ovarian cancer I have is much more common amongst the younger age group and this is an area Prof Banerjee is involved in with her research. She already told me that she has something lined up for me, a clinical trial, if the cancer in my system becomes measurable again and I need to have additional treatment. This is so reassuring and the information about this trial already sounds so positive in terms of the outcomes other patients are seeing from it.
Research is so important and it gives me hope that I have options of a clinical trial if needed. I’m so grateful that more research is being done into the type of ovarian cancer that I have. Research gives people more time and this is all we ever want.