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Diane wasn't told about the link between breast and ovarian cancer

When Diane was diagnosed with ovarian cancer, she couldn’t help asking ‘why me?’ Despite having already had triple negative breast cancer, no one had ever discussed genetic testing with her or explained the possible link between breast and ovarian cancer. Now Diane talks about her frustration, the impact of a BRCA mutation and the importance of having access to good information…

I was always so confused about why this happened to me. Over a year before my diagnosis I had had a full hysterectomy and so I kept asking, ‘how can this happen if everything has been taken away? Why did no one notice the problem?’ 

Diagnosis

I was 51-years-old when I was diagnosed with grade III primary peritoneal cancer

I’d been experiencing bloating, discomfort and needing to go to the toilet frequently, so I went to my GP and was referred to a specialist. However, that appointment was over a month away, and in the meantime I had to go to A&E because of severe pain and bloating. They just said it was likely to be an irritable bowel and sent me away with buscopan and laxatives. 

I continued to experience severe pain and went back to my GP surgery. Unfortunately, my own doctor was on holiday at the time, and the person I saw didn’t help. They just said that they could see there was a problem but that I’d have to wait until I saw the specialist or I couldn’t cope anymore. Luckily, my appointment for the specialist was the next week and as soon as he saw me he arranged for scans the next day. I was quickly admitted to hospital and diagnosed.

BRCA

I wasn’t aware at all about ovarian cancer; in fact it hadn’t even crossed my mind that this could be a thing. I certainly hadn’t heard it discussed anywhere.

I’d had breast cancer in 2005 and my family has a long history of cancer.  After my breast cancer diagnosis I was not offered testing and no link between breast and ovarian cancer was discussed with me. I always feel now that if I had known there was a link, I would have taken action against it.  When I was diagnosed with ovarian cancer, I was offered testing and discovered that I carry the BRCA1 gene mutation. Since then, my 31-year-old daughter has been confirmed as having the gene mutation – along with one of my older brothers (my sister and other brother do not have the mutation). Knowing I have passed on this dreadful gene onto my daughter is a bitter pill to swallow.  However, she is armed with knowledge I never had and can get the right support.

Information

For me, the most difficult part is knowing that I will never be cured. That’s why awareness is key. Don’t let yourself get fobbed off! You know your own body and it’s important to be insistent if you know that you are not right. If I have learnt anything it’s that early diagnosis with this cancer is vital – it doesn’t take prisoners and options are limited for late diagnosis. GPs also need to have more awareness – they need to be proactive in its detection to avoid missing the vital symptoms.

One thing I hadn’t considered was the complication of bowel issues from surgical adhesions. They can end your quality of life, so managing the bowel complications from cancer surgery is often more challenging than having the cancer itself.

Lastly I just want to tell other women to make sure you get your information from reliable sources such as Target Ovarian Cancer. Don’t be tempted to just Google information or statistics because they are often out of date and every single person is different. Ladies are now living long beyond the expected time, so take each day as it comes and accept help when you need it.

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