Personal Stories:

Joanna

Skin-sparing mastectomy to the right side and a bilateral DIEP reconstruction

My breast cancer journey started in June 2013. I was in the bath and I noticed that my left nipple was inverted. I didn’t think anything of it at the time as I was always a bit lumpy bumpy around the time of the month, but I decided to get checked out anyway. I got an appointment with the doctor a few days later who checked it out and decided to get me an appointment at the breast clinic at the Norfolk and Norwich University Hospital.

A few days later, I saw the doctor who sent me for a mammogram and from there an ultrasound and a biopsy; an appointment was made for the following week to get my results. I knew from that point that it was breast cancer, but my husband kept saying I’d be fine, it was only a cyst! Fast forward a week and again I sat in front of the doctor who spoke the words: “I’m sorry to tell you Joanna but you have breast cancer”.
I was diagnosed with Invasive Lobular Breast Cancer Stage 2, it was a slightly aggressive cancer but it was caught early and the prognosis was good!

I remember listening to him talking about what was going to happen next and then a breast cancer nurse took over and took me to another room where I was given further information. She handed me a pack and said: “Right, I want you to take everything that has been said and put it in a box and deal with each stage individually.” OK, I thought!

As we were leaving and waiting for the lift, I could feel my emotions starting to get the better of me. As the lift opened and we stepped in, the tears started and my husband put his arms around me. I don’t actually remember what he said, if he said anything at all, but I knew the news had hit him hard as he was adamant that it wasn’t cancer!

On the drive home I knew I had to fight with everything I had; I had two children (my daughter was six and my son was only one year and nine months old); they needed me! I wasn’t ready to leave them, I needed to be positive and fight with everything I had…..for them and for my husband.

I decided to take the breast care nurses’ advice to compartmentalise so I wasn’t overwhelmed with information and that enabled me to focus on each part of my treatment in full; this was a great help to me and my husband. We also had to think of the effect this would have on our children, well not so much our son as he wasn’t even two, but more so for our daughter. At nearly seven, she knew things were happening, we had a chat with the school and the breast care team also gave us a book called ‘Mummy’s Lump’ – it was an emotional read, but she seemed to understand.

The next few weeks were busy with more tests and scans, scans to check the cancer hadn’t spread to anywhere else which, thankfully, it hadn’t. I also had to have a sentinel lymph node biopsy.
This biopsy tested positive for cancer cells which meant I had to have auxiliary clearance (this is when they take as many lymph nodes as they can from under my left armpit) which would be carried out during my mastectomy. I was also told I needed to have radiotherapy after my mastectomy which meant I had to wait to have reconstruction surgery.

In August 2013 I started chemotherapy; I was also using the cooling cap to try and stop my hair falling out. I have to say this wasn’t an experience I ever want to repeat – it was so cold, it was like putting your head in a freezer. I had six rounds of chemo starting with FEC but after three rounds my oncologist told me that the cancer wasn’t reacting and had grown in size, so they were going to change the drugs for the last three to Docetaxel which worked, as the tumour reacted and reduced in size which was amazing news!

After chemo had finished I got ill, on my daughter’s seventh birthday, I was admitted to hospital as I was neutropenic which meant my white blood cells were non-existent and I needed intravenous antibiotics to help me get better. I came home after five days.
In January 2014, I had my mastectomy and I was glad, as it meant that I was free of my tumour, but there was still a journey ahead, because my cancer was oestrogen receptor positive I had to take Tamoxifen. I also decided that I wanted to be tested to see if I had the BRACA 1 or 2 gene (after two months of waiting for results, it came back negative).

In March 2014, I started 15 rounds of radiotherapy which meant I was up to the hospital  every day for 20 minutes five days a week.
After radiotherapy, my journey paused for a bit; I had completed active treatment but had to wait for at least six months before I could have breast reconstruction surgery.

I had started thinking about reconstruction just after my mastectomy. I started to feel a bit down with only one boob; most of my clothes in my wardrobe weren’t suitable for my prosthetic boob, we were going on holiday in August and I have to admit it wasn’t a holiday I enjoyed because I felt so uncomfortable and felt everyone was staring at me and judging me. I’d been so positive up to this point but I struggled to deal with my changed body shape and from this point, I hated myself!

A visit to my surgeon for a check-up started the ball rolling for reconstruction. I had decided I wanted the DIEP procedure, this is where fat, skin and blood vessels from your tummy are removed and used to create new boobs. My surgeon didn’t do this procedure but he referred me to the lady who could… Miss Elaine Sassoon. I knew there was a wait to see Miss Sassoon and I was prepared to wait as long as it took to see her because I wanted it sooooo badly!!

Whilst waiting, we went to Australia for five weeks for the holiday of a lifetime. We had such a fantastic time, but I never felt truly comfortable, only having one boob was really starting to affect my mental health, which I hid from loved ones, as I thought they would tell me I was being silly, but luckily for me I got a call from the hospital two weeks after returning to say that Miss Sassoon had had a cancellation and would I be interested in the appointment…….errrrrrm YES!!!

February 2015, I finally met Miss Sassoon and the lovely Ruth Harcourt, we discussed my options and agreed the DIEP procedure was the right choice. I had also decided that I couldn’t go through what I had already endured again if, God forbid, I got cancer in my right breast, so Miss Sassoon agreed to a mastectomy and reconstruction to my right boob too which in hospital talk I believe is called a ‘skin sparing mastectomy to the right side and a bilateral DIEP reconstruction’. Now it was a waiting game!

10th September 2015 was Operation Day. I was admitted the night before as I needed to have an ultrasound on my tummy, so Miss Sassoon could see which veins to use for my op. At 8am I was wheeled to theatre under a heat blanket which was to warm up my veins and open them up for my operation.

I remember waking up in recovery and the clock in the wall said 6pm; the next thing I was being told that they needed to rush me back to theatre as I had a complication… a blood vessel they had used had got twisted so needed sorting out, so I was in theatre for another four hours.
It was midnight by the time I was back on the ward. I was in hospital for a week, after three days they got me out of bed and I had some physiotherapy to do. Recovery was tough, I literally couldn’t do anything, sneezing and coughing was awful, I had to hold a pillow to my stomach to ease the pain. After about three weeks, things became easier, I could walk better, not hunched over, and the scars were healing well.
I have to say the results were amazing, far better than I imagined. The next couple of years after reconstruction meant some tweaking, nipples were created, lipo-filling was also needed to create a more even look, I had this three times! I had nipple tattooing too, with the final session completed in 2018.

In 2020 I was able to have 3D nipple tattooing which I paid for, now this I highly recommend – it’s amazing how real they look.
Throughout my journey, I have met some truly amazing people, been inspired by stories I hear and am a total supporter of the work that Keeping Abreast do. I was lucky enough to be a model in the ‘More Than Just Fashion Show 2018’ and hoped to do it again this year, but Covid-19 put a stop to that. I hope to show my support again next year for the fashion show by modelling again… fingers crossed!
I am always happy to tell my story; I always said if I can help just one person I’d be happy. I’m not going to lie – my journey was tough physically, emotionally and mentally, but if you are positive you can get through.

Breast cancer was only a chapter of my life, it’s not the whole story; there’s plenty of chapters to get though yet!