The symptoms of ovarian cancer can be obvious or they can be subtle. For Sally, the only sign that anything was wrong was the fact that she needed to wee more often…
I could tell by the look on the GP’s face that the lump I had felt in my pelvis wasn’t a good thing. She arranged an immediate CA125 blood test and called me back, telling me to prepare myself for bad news.
The truth is I felt fine except for the lump that I had recently become aware of; there was no bloating and I didn’t have any pain. I just needed to wee more often, that was the only thing.
I’d always been pretty fit and healthy, so when I started to need the toilet more often I just put it down to the menopause. It wasn’t until I found a lump in my pelvic area that I started to think this might be something more unusual. I decided to make an appointment to see my GP. Things just sort of snowballed from there.
After an ultrasound scan showed a 20cm ‘cyst’, they were fairly sure that it was ovarian cancer.
At the time I had a vague awareness of the disease because two of my friends had ovarian cancer diagnoses, but I wasn’t really familiar with the symptoms. Other than bloating, I had no idea about what else to look out for.
I was quickly scheduled for debulking surgery with a full hysterectomy and I also ended up having a colostomy, resulting in a stoma. Fortunately the surgeons managed to get rid of all visible disease – although there may still have been a little bit on the outside of my liver. After surgery they gave me the official diagnosis of low-grade serous cancer.
The toughest part for me personally is the uncertainty; it’s not knowing what the future holds. If I had high-grade serous the prognosis wouldn’t be great, but with low grade there are fewer patients and a lot less information. My oncologist mentioned that she only sees one such patient a year.
Soon after my diagnosis I asked if I could be put in touch with someone else with my diagnosis. The Clinical Nurse Specialist kindly arranged this and I emailed a lady living locally who has lived with low-grade ovarian cancer for 16 years. This may not happen for me, but it was so encouraging to hear from her. There is also an international Facebook support group for people who have low-grade serous ovarian cancer, which has been so helpful for me.
Other than the uncertainty, I also found having a stoma to be a bit of a shock. I had to be quite organised so I didn’t find myself struggling or ending up in an embarrassing situation. You want to avoid any accidents.
I was so shocked at my diagnosis that I just wanted to raise awareness, particularly about the tendency for a late diagnosis. I wanted to share my experience by telling both younger women and post-menopausal women about this kind of diagnosis.
When my 13-year-old daughter found out I had cancer it had a big impact on her. She’s had a few anxiety issues since but has had lots of help and support. Although daunting, going to school has been helpful for her. She had a teacher who had also experienced cancer and chemotherapy, which helped. It’s a hard thing to deal with at that age.
A lot of women with ovarian cancer are diagnosed late – when their cancer is stage III or IV, so better awareness is key to improving outcomes. If every post-menopausal woman was offered information and screening, my cancer might have been caught earlier.