'I had breast cancer, but only found out once I started breastfeeding my baby'

Donia Youssef, 45, from Essex was diagnosed with breast cancer while breastfeeding her second baby. Here she shares the emotional rollercoaster of being a new mum while facing devastating news.

On my 39th birthday, I decided it was high time I Iet my hair down. I’d been breastfeeding my second baby Tiana for 18 months and as much as I enjoyed our close, bonding moments during feeding – as well as the health benefits – I was ready for us to move on to the next milestones and reclaim myself in the process.

I danced the night away and had an amazing birthday. But the next morning, while drying myself after a shower, I noticed a hard lump the size of a golfball under my arm. I was confused, ‘Did I bash it on the dance floor?’ On closer inspection, I couldn’t see any sign of bruising. I noticed my boobs looked slightly irregular in shape and when I felt them, they were hard in places, but I assumed it was my bone.

Unbeknown to me back then, my days of breastfeeding were already over.

Juggling work and motherhood

I was lucky to have fallen pregnant quickly with both of my children, Aaliyah, now 11 and Tiana, now eight. I loved being a new mum in those first few months, but I also loved my career and friends, so I went back to work part-time at a digital media company when she was four months old. In hindsight, it was too soon – I felt I was missing out on her ‘firsts’ and also her big sister Aaliyah. I gave up my job and decided to start my own company so I could work from home, breastfeed and be with my girls.

The juggle of work and being a new mum was intense. My stress level rocketed. I wanted to prove I was some kind of wonder woman and could work the long days and manage the kids, but the reality was my health was suffering.

I was exhausted from spending the night feeding and the days working while juggling a toddler and a baby. Tiana was a very clingy baby and such a creature of comfort. I’d tried everything to wean her off in those last few months – marmite on my nipples and even smelly cabbage leaves in my bra – but it didn’t make any difference. She was used to breastfeeding on demand and I gave in to her because I felt guilty working. I think the stress sent my hormones into complete turmoil.

My weight loss was dramatic after my second baby. I’d put on three and a half stone during the pregnancy but after the birth, I was slimmer than I was before I had children. I was a size eight, instead of my usual 12. I just put it down to being a busy, breastfeeding mum.

I was also experiencing extreme tiredness during this time. Even after a full night’s sleep, I would feel weak and nap during the day. I saw a doctor but my blood tests came back fine so there was no action taken.

Breakdown

During this time, my moods became affected. I worried I had postnatal depression, but again, after a visit to the doctors, I was advised to exercise to help improve my mood. It was difficult when I felt so tired.

Despite how I was feeling, I wasn’t shaken when I found the lump in my armpit that morning after my birthday, I just put it down to a symptom of breastfeeding over the years. But I called my dad who is a GP and he told me to see my doctor first thing on Monday.

When my concerned GP referred me for a mammogram at Basildon University hospital, I wasn’t fazed. In my mind, he’d found cysts – a possible side effect of breastfeeding.

A week later, I arrived in the hospital appointment room, this time with my partner, parents and sister for some moral support. I noticed the walls were covered in Macmillan Cancer Support charity posters and panic started to set in. This was my first time having a mammogram – I was only 39 (the NHS doesn’t offer a routine mammogram until you’re 50).

I was taken to another room for a biopsy afterwards and that’s when I got scared – both of the needles and of what lay ahead. The screen on the monitor next to me showed white, flashing shapes in my breasts. The consultant measured one to be five centimetres and another was seven. "I’m afraid it’s not looking good, there’s a 50% chance this could be cancer," the radiologist said. I instantly broke down in tears.

The reality hit me hard. I’d seen the tumours with my own eyes. I couldn’t speak, I could only cry. And I didn’t stop for the next week, every time I looked at my kids, I’d crumble.

Devastating news

When the biopsy results came in, I was called back to be told I had stage two cancer. Weirdly, I felt relieved. Stage two didn’t sound too scary. But then I was told the cancer had spread to my lymph nodes. I felt frightened but at the same time, I wanted to stay strong for my family who were by my side. They’d suffered enough trauma in their lives, I didn’t want to burden them any more. I knew I also had to stay strong for my girls.

Looking back, I quickly adopted a very practical attitude. I started on a six-month chemotherapy plan while doctors investigated whether I had the BRCA2 gene – which I did. My grandmother had died at 50 of breast cancer as had her mother. It also means my children have a 50% risk of carrying this mutated gene.

Further examinations at the Royal Marsden in Chelsea, London, showed that the three tumours had probably been growing in my breasts for the past three years – all the way through my pregnancies and while I was breastfeeding.

I felt so angry towards the cancer. The chemo made me tired and I couldn’t do the day-to-day activities with my kids like walking to school or playing in the park. I felt I had been robbed of my motherhood and was angry at the cancer for subjecting my children to their loss.

What should have been a happy bonding time sadly was taken away from me. My girls were still very little and it affected them – they started wetting the bed and throwing angry tantrums.

Trying to cope

The next year was tough. I had a 12-hour operation for a double mastectomy, lymph node removal in my left arm and a hysterectomy. My immune system was battered from the chemo and I caught infection after infection. It became so hard for the girls to see me in hospital wired up to machines – no child should see their parent suffering so much pain. I tried my best to put on a brave face. I joined support groups on Facebook for young mums with cancer which was a huge help.

When I was back home, I’d over-compensate for my absence or lack of energy by buying presents or organising far-flung, family luxury holidays. I took them to a theme park once, but it ended badly as I fell ill a few days after.

Thankfully, in January 2018 I went into remission. I spent my days planning for my childlren’s futures and making sure they were going to be financially stable, while writing my first book The Monster in Mummy to help parents who were affected by the illness. I later turned this into a series of 'Monster' books for kids. I felt like I’d been given a second chance in life and wanted to help others. The girls also got their mum back again.

A new way of life

My career has completely changed. I continue to publish books. I've launched a film production company this year and I'm about to launch a TV channel — these are two things I would never have dreamed I'd achieve pre-cancer diagnosis. I'm packing more into my life than ever before. My experience has taught me that life can be short – my friends have nicknamed me ‘Donna the do-er’.

My daughters have been like my little crutches, keeping me going. I saw my eldest daughter Aaliyah start secondary school this year which was a huge milestone in our family life — something I felt blessed to see. However these milestones can often be tinged with guilt as I feel for the friends who have passed this last year from cancer and who have left young children behind. I am so grateful to be alive and be a mother.

Although I'm well, if I hear of someone being diagnosed or if I catch an infection, I experience triggers which can send me into a bad headspace. My brain spirals with worst-case scenario thoughts. I try and stay away from Google and channel my energy into my work to take me out of it.

I am a hell of a lot more aware of my body now and I also have a newfound respect for it after what it's endured. I have breast health check-ups and blood tests every three months at the hospital. I will continue taking my oral chemo tablets daily for the next five years. I'm kind to myself and I'd suggest other women do the same. I've had therapy and I surround myself with my beautiful family and a small, tight group of great friends who I love and who keep me calm. This is key to my happiness today.

Visit Breast Cancer Now, the research and support charity for advice.

This article was first published in August 2022 and has since been updated.