Angela's Story: I fear the future as there is no answer to how long I remain in remission
16 December 2023
Angela was 52 when she started experiencing a fizzy feeling in her bladder. In October 2022, she was treated for a UTI but when the symptoms didn’t go away, she was sent for scans which revealed a large tumour on the ovary.
Angela tells us her story.
Getting the diagnosis of ovarian cancer was a shock and completely unexpected.
I wasn’t aware of the symptoms and although I did have them, I put it down to menopause. I was 52 and thought I was reasonably healthy and fit but in October 2022 I had a strange ‘fizzy’ feeling in my bladder and noticed I was having to get up numerous times through the night for a wee and each time I felt like I was bursting.
It was also painful when I urinated. I thought I had thrush, so I self-treated and it would settle for a couple of days before flaring up again. Perhaps it was cystitis, so I self-treated with cystitis sachets. The same thing happened.
I called the GP who directed me to the chemist for an antibiotic for a urinary tract infection. A week later I had the same symptoms and went back to the chemist, who sent me back to the GP.
This time the GP asked if I had any other unusual symptoms, so I told him about my bloated stomach and extreme tiredness. I was sent to my local hospital that day for tests.
After a pelvic, vaginal and rectal examination I then had bloods taken followed by a CT scan and a vaginal ultrasound. I was told that day that I had a large tumour on my left ovary which was probably ovarian cancer.
Time seemed to stop. It was the most surreal experience I have ever had.
The nurse and consultant were very grave and serious and explained the probable next steps which would be surgery and chemotherapy.
I was seen quickly within the 2-week pathway and informed that I required debulking surgery which would be in January 2023.
Telling my 2 adult daughters and partner was extremely hard, they were all devastated and thought the worst. We had a lovely Christmas with extended family and didn’t discuss the diagnosis, but it was clear that we all wondered if this was going to be my last Christmas.
I had ascites and reading about this was quite frightening as it seemed such a final stage. I tried not to focus on statistics, but I always like to be prepared and know all the details, so I did a huge amount of reading. This helped me a lot as communication from the gynae team was very poor.
I had the debulking surgery in January as planned, unfortunately during surgery the tumour was found to be wrapped around my bowel resulting in a permanent colostomy and an extended stay in hospital. 3 litres of fluid was drained, which helped the ascites.
The cancer was confirmed as stage 3c.
Since the operation I have developed a parastomal hernia behind my colostomy and an incisional umbilical hernia which causes me pain every day but can’t be repaired until the oncologist refers me for surgery, which won’t happen until my cancer is fully in remission.
This has had a negative effect on my recovery as I cannot get back to the fitness I had before.
My whole image has had to change with large support pants and looser clothing. My partner has been amazing but it doesn't really stop my sadness about the life I have lost.
After surgery I had 6 cycles of chemo. This was hard and I shaved my hair after the 3rd cycle as I had a lot of large gaps and I was becoming obsessed by looking at it, thinking about it and even dreaming about it!
Losing my hair wasn’t as traumatic as I thought it would be, however losing my eyelashes and eyebrows was. The impact this loss had on my mental health was quite noticeable and I tried to avoid people and outings as much as I could until they grew back. This has made me consider retraining in micro blading as I would love to help other women in similar circumstances.
My employer and colleagues were very supportive, and I was also lucky with friends who provided a lot of support and plans for the future.
I was surprised by how few of my friends and colleagues knew about the symptoms. I’m regularly asked why I didn’t have a cervical smear as people believe the cancer could have been detected this way.
I’ve now commenced on niraparib and on the waiting phase of the journey to see what happens next. I start back to work soon and am mostly positive about the future but as a realist this is also tinged with fear as there is no answer to how long I remain in remission.
The information I have received from this Ovarian Cancer Action has been fantastic and I will continue to support them particularly with raising awareness.
Like Angela, many women with ovarian cancer face the fear of a future of recurrence and relapse.
Our scientists at the Ovarian Cancer Research Centre are working tirelessly to find new treatments and opportunities to change the statistics for ovarian cancer recurrence. You can help them.