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Marilyn: ‘I was scared, so I buried my head in the sand and ignored my symptoms’

11 April 2023

Marilyn was diagnosed with a rare form of high grade ovarian cancer in early 2022. Here she highlights why she was reluctant to visit the GP, and why it’s vital women are equipped with the information about ovarian cancer as soon as possible. 

Marilyn is determined to make sure no other woman has to go through what she did.

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“I didn’t go to the GP initially about my symptoms and instead I fobbed them off with homoeopathic remedies. I was experiencing haemorrhoids, constipation and abdominal pain, bloating and poor appetite.

It took me so long to get medical advice because I had a deep fear and mistrust of health professionals. I was really terrified. As a black woman, my experience hasn't always been positive - I have had some rubbish doctors, which I’m very sad to say. The historical medical atrocities inflicted on people of colour also didn’t temper my apprehension. 

It took an escalation of crises and my family nagging to get me to visit the GP. I knew I was in trouble and had left it late to seek medical assistance but when I did eventually go, it took so long to get a diagnosis.

“My advice to other women is to get to know your body inside and out, so that you can notice any abnormal symptoms”

A tumour was found after my GP referred me for a blood test and CT scan. There was a mass 20cm large in my lower abdomen and I was told it needed to be removed along with my womb.

But a sample had to be sent off for further investigation before they could say if it was cancer. It was of a very rare type and had a weird staining pattern which they’d not seen before. 

Knowledge is vital to early diagnosis

It was only when I was having a consultation about surgery that they mentioned the probability of it being cancer. 

By this time it was December 2021, and they were talking about doing the surgery in February 2022. With everything going on, I was thinking that I wasn’t going to make it to then. When there was a cancellation, I had the surgery a month earlier than planned. But it wasn’t successful. 

I was diagnosed with a form of grade 3c high grade serous ovarian cancer. I totally lost it. 

“I was ignorant of tests that could tell me more about my genetic risk of cancer”

Both of my parents died as a result of cancer, so genetics was against me. If I had taken that seriously, maybe preventative care could have been sought or I would have been diagnosed earlier. But you can be sure now, armed with the information about genetic testing, I’m getting my daughter and grandkids tested.

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The chemotherapy has had minimal effect in shrinking the cancer. Surgery isn’t an option for me personally - it would diminish my quality of life with no guarantee that the cancer will be entirely removed.

I have stage 3 cancer now and surgery isn’t feasible. My last CT scan and consultation gave me just 6-12 months to get my affairs in order. The cancer is aggressive and is starting to spread to my liver.

With so much going on, I am trying to regain some control over my life. I enjoy creative projects like sewing and embroidery to help my mind focus. I also owe a big thank you to the nurses as they continue to be a great source of support and encouragement to me.

Earlier this year I also started taking part in an immunotherapy trial for women like me who don’t respond well to current treatments. It’s called a Phase 1 Garnet study. I understand it has had some success with pelvic cancer but its effects on other types are yet to be determined. I will have another CT beginning of May to check progress. I have had fluid on my lungs and abdomen so, in the past two weeks have had drainage. That put me out of commission and was so unpleasant. There isn’t a huge amount of hope for me right now, but imagine if this trial could find a breakthrough in ovarian cancer research? This would not only benefit me but it would also improve the survival rates of those with late-stage cancers.”

Only 44% of women live beyond five years. It’s unacceptable. We must do more to ensure every woman with this terrible disease has the best chance of survival.

In Marilyn’s Name, please support us to make sure women can access the best care and information regardless of their age, ethnicity or location. With you on our side, we can turn the tide on ovarian cancer.