Tia’s journey
Tia was diagnosed with a rare type of ovarian cancer in March 2020, aged just 22 years old. She underwent surgery at Croydon hospital to remove the tumour which weighed 8kg, the equivalent weight of three new born babies. Following surgery, she was referred to The Royal Marsden under the care of Dr Desmond Barton and Dr Angela George and underwent fertility preservation treatment. Instead of having chemotherapy treatment, Tia opted to go on an ‘active surveillance’ programme which she remains on today. Now 27 years old, Tia returns to The Royal Marsden regularly (every 3 months) for monitoring and is still cancer free. She lives in London, working in the Editorial team at EastEnders’, and is keen to raise awareness of ovarian cancer – especially in young women.
Ovarian cancer diagnosis at 22 years old
“Just two months after being admitted to A&E with an inexplicably bloated tummy, I was diagnosed on the 3rd March 2020 with a rare type of ovarian cancer. Reflecting on my journey now, feels somewhat strange, reflective yet incredibly hopeful to be on the other side of treatment.
Though it still feels quite fresh, I would consider myself worlds apart from how I was pre-diagnosis. I am now so much more in-tune with my body. As a young person, I was incredibly naive to my body’s warning signals- I had no idea such seemingly minor symptoms such as bloating and abdominal pains could indicate a more sinister matter. As many other people would, I dismissed these as hormonal or dietary factors, believing I was just putting on weight.
I started experiencing bloating, pain and irregular periods around September 2019. This was also shortly after my mum had a radical hysterectomy at The Royal Marsden in July 2019, which was treated as suspected ovarian cancer. Due to this history, I went to my GP and reported my symptoms, requesting a scan. At most, due to my age and fitness, I thought it might be polycystic ovarian syndrome (PCOS), which I was diagnosed with at the age of 15. The severity of my concerns, quite frankly, were dismissed and I was told that due to my age, it was likely a hormonal fluctuation with the PCOS. I was made to believe it was not a big deal, and so I was hesitant to request a scan again.
December came around and my bloating became even more visibly severe. At the time, I was working in Gloucester Road and so while travelling on the tubes, I was constantly greeted with, admittedly very conscientious commuters who would offer me their seats without question- much to my surprise. It became a running joke in the office that I was pregnant.
I handled this at the time by wearing baggier clothes and exercising at the gym most days after work in an attempt to get rid of what I thought was excess weight. It was self-denial- as well as the fact that it was Christmas and around my birthday. Unintentionally, I also found myself feeling less and less hungry- objectively I should have suspected something was not quite right.
Of course, however, I didn’t think it was anything to be concerned about.
It was only when my parents said, ‘what has happened to your tummy?’ one evening, I called 111. They told me that I needed to go to an urgent treatment centre. This would have been in January 2020. The urgent treatment care centre then turned me away, stating that there were no further tests they could do after ruling a negative pregnancy test. I then went to another GP and he told me to go to A&E. After a whole day of being turned away, I was then in A&E on Friday night being told, ‘we can’t understand why you are here.’.
I did two pregnancy tests, both of which came back negative. I was then asked to do another one, having been told that I appear to look eight months pregnant. Within the last few months, it had clearly escalated but I had not been paying enough attention to the changes. After telling them there is no chance of pregnancy, was when I was brought to the attention of the gynae team for further investigation. I was admitted as an in-patient for five days, until they could establish the cause of the abdominal mass. The scans revealed that I had a very big cyst. I was then given an MRI scan which came back to show I had a 25 to 27cm cyst with suspected malignant change.
I was informed at the time that this could be cancerous. However, with my mum’s case, it was also suspected malignancy which, thankfully turned out to be benign tumours. With this positive outcome, as well as the fact that I was generally fit, healthy and active at work, I dismissed the possibility of cancer pretty quickly.
My case, however, was still escalated due to the size and suspected malignancy of the cyst, and within weeks I underwent a laparotomy surgery on the 13th February 2020 at Croydon University Hospital. Just three weeks later following pathology results, two Macmillan nurses accompanied the surgeon to my appointment. I had met these nurses when I was admitted through A&E, however, I did not put two and two together or question why they might be there. As the surgeon spoke through the outcome, I noticed he was getting slower and he even got emotional when informing me that, ‘it is cancer.’ To this day, the numbing feeling of this statement never ceases to confuse and shock me. Especially at the time, this flew over my head. I couldn’t properly digest the information and neither could my mum. I was then told from this point forward, I was being referred to The Royal Marsden for further treatment. The Macmillan team then took me away to discuss things in more detail. This was the last appointment where my mum was able to accompany me.
I didn’t know how to react. I was very numb. It still sounds surreal to me today.
Referral to The Royal Marsden
The surgical teams at Royal Marsden and Croydon University Hospital were working well together. I had my operation three weeks or so after my fertility treatment.
At my first appointment at the Marsden they went through my entire history and the plan of action for my treatment. The first step was undergoing a fertility treatment to freeze my eggs. This came with its own physical and mental challenges as my left ovary wasn’t really working anymore – this is where the cancer was found. As the staging of the cancer and whether I would need chemotherapy was undetermined, this was possibly the last chance to have my own children. I also didn’t have time to repeat hormone treatments as it became a matter of priority to have the second surgery done.
So many things were going through my head at this point. I didn’t know whether I was going to need chemo, or what the stage of my cancer was. I thought I would already know at the time of diagnosis, but everything was uncertain. I was struggling with what my future was going to look like. Would I have a quality of life?
Despite initial setbacks, the teams managed to retrieve 10 eggs. A healthy amount is 16 – 20. So, I did well considering.
After the egg freezing, I had to wait a few weeks due to the hormonal injections impacting my reproductive system, before being booked in for a CT scan. By this point I was only allowed to go into the hospital by myself. I was really terrified. This was completely new territory for me and not having anyone accompany me at first was daunting. But everyone at The Royal Marsden was welcoming and friendly, at a time where I really needed support and reassurance. I was so nervous about everything. Cannulas were a struggle with my veins. Everything was a struggle.
I was given a CT scan around two-three weeks prior to the second surgery, which was performed on the 24th April 2020. With the left ovary being removed, I was also told, ‘if you were older and you’d had children we would look to remove the right one as a precaution.’ However, due to my age, they kept this in to prevent pre-mature menopause and to provide me the chance to naturally conceive in the future.
Following this surgery, it was confirmed that the cancer (an immature teratoma) was contained just within the left ovary, and so was staged at stage 1.
I found myself to be lucky in the sense that my body reacted early on to this abnormality- often with ovarian cancer, two thirds of women do not recognise their symptoms until the cancer has spread.
The tumour, which was removed, weighed 8kg, which is the equivalent of three new born babies. I could not believe I had been carrying such a heavy cancerous tumour obliviously whilst continuing my normal routine for so long. I was shocked.
At the multi-disciplinary meeting, my case was discussed regarding the next treatment. At first, 50% of the team thought chemo may be the next best step just in case, and then 50% advised against it due to my age and possible further complications I would develop from it. With a 50/50 split, I feared for how I could make such a big decision, and whether I would make the right choices. I went to Marsden to speak to my Doctor but I still had the final choice in my treatment plan.
Essentially, I was told that there was a 15 to 20% chance of reoccurrence if I had chemo, and 15-20% if I didn’t have it. The chemo would give that extra assurance that nothing was left over. But she advised that with those odds it might be better to start off on active surveillance and if anything were to come up, they would spot it and be able to administer chemo quickly. She warned me that active surveillance meant there will be a lot of hospital trips over the next 10 years, starting off with scans and blood tests every three months for the first two-three years, which then will decrease to every six months.
I decided to go with the active surveillance option, as I had the peace of mind and reassurance that should anything crop up, the team at The Royal Marsden will be able to spot it very quickly. I have now been on surveillance since May 2020 and every time they have seen something suspicious, it has been further investigated through MRI’s.
I have never felt uncomfortable throughout treatment. As it is so new to me; I didn’t want to feel as though I was contacting the hospital unnecessarily if I felt any symptoms at the start of the surveillance. The doctors and nurses at every point, however, reassure me that with anything, no matter how serious, to call them immediately.
Knowing that they are there as a support network makes a big difference.
It has become my main priority now to raise awareness of the symptoms young girls may experience, as finding an early diagnosis of cancers ensures the best possible chances. During ovarian cancer awareness month previously, I have helped at Croydon University Hospital, where I had my surgery, to help raise money for various ovarian cancer charities, handing out flyers and promoting B.E.A.T symptoms: Bloating, Eating a lot less, Abdominal pain and needing to go to the toilet more frequently. Prior to my treatments, I had three out of the four symptoms.
If there is one silver lining my condition has vividly reminded me of, to ensure I am happy in everything I do. My passion is to write, and so while I was recovering from my second surgery, I wrote a script which made it through to the final stage of the BBC Arts’ New Creatives programme, with a chance of securing a commission with the BBC. After that, BAFTA were looking to create a programme for emerging writers and so I submitted a script and was accepted into their community to develop my writing. I also enrolled on a graduate writing course at Columbia University in New York from October 2020-January 2021 which has been incredible getting to explore different forms of writing.
All of this has occurred within the year of my cancer diagnosis, more than I could’ve ever imagined I would accomplish in a year under normal circumstances.
It has taught me that having a healthy and optimistic perspective on any dark situation, will help you to navigate through even the toughest of moments with resilience and maturity.
Every year at The Royal Marsden you could donate and name a star after a patient or a passed loved one. All I wanted for my first birthday post-cancer, was for donations to be made to The Royal Marsden, as this is ultimately the place that ensures my good health, strength and quality of life. My mum then honoured this through naming a star for me. I even managed to find mine when I came to see it on my birthday!
I feel fine. I feel hopeful. It could have been a lot worse. I am now aware of it, and had it not been for observant fellow commuters and family members, I may not have been for a really long time.