Name: Karoline
Age at diagnosis: 30
I am: My parent’s eldest daughter, a granddaughter, a sibling and an auntie.
Ovarian cancer stage/type: Stage 1C low-grade serous ovarian cancer
The cancer was found when:
In 2021 I started noticing frequent bloating and urinary frequency. I told myself that the bloating wasn’t real – “My body is just built this way”. I recall thinking my body was just changing with age. The urinary frequency I put down to the weather – “it’s just cold today” – and the best thing I told myself was “It’s all in my mind”.
Nevertheless, I visited my GP and after some discussion, I was given a referral for an internal ultrasound. I put this off for a few months but eventually went in, only to be told I had bilateral complex ovarian cysts. Not suspicious enough to warrant immediate attention, it was recommended I wait approximately eight weeks for another internal ultrasound to see if these “complex cysts” had rectified on their own. They had not. I had also requested a CA-125 test to check my tumour marker levels, which returned as slightly elevated.
This prompted my GP to refer me to a gynaecologist, but due to the pandemic and restrictions in place, I wasn’t seen until five months later. I was eventually seen by a gynaecologist who told me the risk of anything concerning was low according to the online “Risk of Malignancy Index” tool.
I was offered a bilateral ovarian cystectomy purely due to the fact I had painful periods. I remember thinking I shouldn’t have the surgery and that there wasn’t any point in putting my body through that. Well… I’m glad I did. Three months later I had surgery where my left ovarian cyst was removed. My right ovarian cyst could not be found. After surgery, I received a phone call that my complex cyst was in fact a serous borderline ovarian tumour (sBOT). I was referred to a gynecologic oncology team who explained that sBOTS aren’t cancer but have the potential to turn into low-grade serous ovarian cancer.
I had another internal ultrasound to help identify what our next surgical plan was to be. At this stage, my right ovary still showed a mass. After I had a recurrence on my left ovary I underwent another cystectomy aiming to remove the masses from both ovaries, but unfortunately, my right mass was “not there” again, whilst my left ovarian mass returned as a sBOT.
I remember feeling defeated and saying to myself that I couldn’t do another surgery. My oncology team recommended I remove my left ovary and keep my right ovary as imaging reports indicated it was a complex cyst. I strongly disagreed with this and told them I didn’t think I should keep my right ovary, as I had a feeling it was something more.
Two months went by, and I had another internal ultrasound. This time I was told the mass on my right ovary looked suspicious. So for the 3rd time in 18 months, I underwent surgery, this time to remove my right ovary.
Four days after my surgery I had a call from my surgeon. They said, “I’m so glad we opted to remove your ovary, it has come back as low-grade serous ovarian cancer”. I told her “I’m not surprised, to be honest, I’ve prepared for this“.
My oncology team sent me for a PET scan to find out what stage I was. Prior to the scan, I recall asking whether my low-grade serous ovarian cancer was there the entire time. They didn’t know but were confident it was confined to my ovary. The duration from asking that question to the day of my PET scan was 6 weeks. Those 6 weeks were pretty tough, I found out I had Stage 1C.
What I want people to know about ovarian cancer:
Ovarian cancer can affect women of any age. Don’t ignore symptoms associated with ovarian cancer. Voice your concerns and if you’re not heard, find a doctor who will listen.
The biggest challenges of ovarian cancer:
The biggest challenge for me throughout my ovarian cancer journey was making future plans. I was fortunate in this unfortunate diagnosis that the cancer was confined to my ovary, so fertility-sparing treatments were an option.
Positives to arise from the diagnosis:
The only good thing that has come from my diagnosis is that some of my family have rekindled their relationship in support of me. This means more to me than they’ll ever know.
My hope for the future:
I hope myself and other women touched by ovarian cancer can live a life without the stress of recurrence. Some days a random sharp pelvic pain is enough to alter my mood for the rest of the day. I understand there are currently promising treatments for low-grade serous ovarian cancer, so I suppose my hope for the future is that front-line medical staff like GPs and gynecologists are better educated and equipped to identify and consider the possibility of ovarian cancer in younger women.
What I would say to someone else going through this:
Being diagnosed with ovarian cancer is scary. It forces us to consider future plans and places us in a state of uncertainty. I suggest not looking too far into the future, try to stay in the present and do things to help ground yourself. Your mental well-being will be tried so take care of that.
We are grateful to Karoline for sharing her experience with low-grade serous ovarian cancer and for helping us raise awareness. If you would like to share your story too, find out more here.
