Ingrid knows all about the BRCA gene mutation. As an Ashkenazi Jewish woman, she’s around 10 times more likely to carry the mutation than women in the general population. Now, having recently received confirmation that she has the BRCA1 gene mutation, she talks about her ovarian cancer experience, and why she’s ready to accept that her diagnosis might have been hereditary…
I noticed I had been having mild abdominal discomfort for about three to four weeks, and some irregular spotting. I wasn't bothered by the symptoms but I knew they weren’t right, so I arranged to see my GP.
Having worked in the cancer community for the past 4 years, I am very aware of ovarian cancer. I was pretty sure I had ovarian cancer from my symptoms, but I thought I would go to the doctor to put my mind at rest. After being examined by my GP, I was told that "this could be something or nothing" - thanks Doc, I think I had already come to that conclusion!
As a Jewish woman, I was fully prepared for the fact that I might have a mutation in either the BRCA1 or 2 genes
No cause for concern
I then saw a gynaecologist. Scans showed a small cyst on my left ovary, but it wasn't cause for concern. I was prescribed medication for IBS and sent to have blood tests.
I thought nothing of it until two weeks later when I received a called from the consultant's secretary telling me one of the blood tests had come back slightly raised. I asked which one and was told CA125. Of course, I looked it up straightaway on Google. My heart sank as I read this was a marker for ovarian cancer. My CA125 was only slightly elevated (at 75), however I was quite worried. I had to go through my son's 18th birthday party that afternoon full of concern and dread.
I had an MRI scan and the radiographer reported no cause for concern. The Multi-Disciplinary Team (MDT) were satisfied, but for completeness, requested I have another CA125 test. This time, the result came back even higher, 275.
Finally I received a diagnosis. The MDT had found another cyst on my right ovary. It had become attached to my womb and was tucked around the back, making it difficult for the radiographer to see. It was a borderline ovarian tumour, with a 10 per cent chance of malignancy. At this stage, I was relatively calm. There was a nine in ten chance it was nothing, which were good odds in my mind. The recommendation was for a full hysterectomy.
Softening the blow
The operation took place at the end of June. My son was in the midst of his A levels and I wanted to wait until he finished before having surgery. I didn't want him to worry unnecessarily during his exams.
That evening, whilst woozy from the anaesthetic, the surgeon told me he had found disease in both my ovaries, my fallopian tubes and my womb. I think he told me this in recovery to soften the blow.
I learned that it was Stage III high grade serous ovarian cancer. I had resigned myself to the fact I had ovarian cancer very early on, so the diagnosis was just the confirmation of what I already knew. The surgeon was confident that it hadn’t spread outside the pelvic cavity, but I would still need to have chemotherapy to remove anything microscopic.
I think my attitude to my body image changed after my operation. Pre-op, I had lost weight and toned up due to exercising three times a week, but since the op, I have a ‘swelly belly’ and my muscle tone has turned to fat.
I’ve also lost various aspects of myself that make me "me". I’m usually organised and on top of things, but "chemo brain" has made me forgetful and absent-minded. I am also tired a lot of the time. I’ve always been a planner but at the moment, with so much uncertainty, I don’t feel able to forward plan. On the plus side, I used a cold cap during my chemotherapy and did not lose my hair, which has really helped me with feeling positive. I don’t look like the media-perceived "cancer patient" so I don’t feel like one’
I had a genetic test and consultation in November and have just received the news that I have the BRCA1 gene. As a Jewish woman, I was fully prepared for the fact that I might have the faulty gene and if my ovarian cancer returns, I know that PARP inhibitors might be a relevant course of action. My father passed away in 1974 from testicular cancer – I was six and he was just 29, however, there’s no link between the two cancers.
I am feeling positive about my future, although it is tinged with uncertainty.
I feel fortunate that I have lots of information. I ask questions every step of the way - to the consultant, nurses or my contacts in the cancer community. This is happening to me and I need to have all the facts.
The symptoms of ovarian cancer are so "normal" and bearable, that many women might overlook them.
I went to the doctor as soon as I noticed symptoms, and I was still diagnosed as Stage III. If my story and my experiences can help other people, then I will feel I have achieved something crucial - my legacy if you like.
Find out more
- Learn more about hereditary ovarian cancer
- Learn about the symptoms of ovarian cancer
- Join us for Ovarian Cancer Awareness Month