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When my sister was diagnosed with breast cancer, I kept my lump secret

Rosemarie found a lump just before her sister was diagnosed. Black Women Rising helped her accept her diagnosis.

Rosemarie found a lump in her breast just before her sister was diagnosed with breast cancer. She shares how the support of her family and Black Women Rising helped her accept her own diagnosis.

I delayed getting my lump checked

In May 2018, I found a lump in my left breast. Initially I was in denial, putting the lump down to normal breast changes. As a midwife I know about breast changes and often give advice and support to women about checking their breasts.

Then in June, my sister was diagnosed with breast cancer after a mammogram. I went to all her appointments with her and supported her through it all, even though in the back of my mind I was concerned about my own breast. I felt I couldn’t say anything because I didn’t want to make the situation about me. I didn't tell anyone, including my sister.

In July 2018 my sister went on holiday before starting treatment. I took the opportunity to get myself checked. I had a mammogram and a biopsy of the lump and a few suspicious areas of the breast. On the 9  August 2018, I was eventually diagnosed with DCIS and invasive breast cancer. I was 48 years old.

In that moment, I realised my own mortality. I had cancer. 

My sister and I supported each other

I told my mother and the rest of my family. When my sister returned from holiday I told her about my diagnosis. She was devastated and couldn't believe I kept my lump a secret for so long.

During the following weeks we were both able to support each other. Her surgery was first, so I remained strong and went into medical mode to support her through this emotional time.

When she was recovering, she was able to help me deal with the worries I felt as my own surgery approached.

This was a difficult time for the whole family, but we tried to remain positive. My medical background meant I was able to ask the necessary questions to get the answers we both needed.

My surgery had complications

I was told I would need to have a mastectomy and a sentinel lymph node biopsy.

I opted to have a reconstruction using tissue from my thighs. On average this surgery can take up to eight hours. I ended up in theatre for 18 hours.

There were complications. The first flap taken from my thigh started to fail. I had a second flap taken from my other thigh, but the blood supply to it failed. In an attempt to save the flap, vein grafts were taken from various areas. Eventually a vein from my left calf was used.

When I woke up, my left breast was half its original size. My main shock however was seeing a large bandage on my left calf. I couldn’t understand why there was a bandage on my leg.

When the bandage was removed, the scar I saw floored me. I was devastated to see a long scar stretching from the middle of my inner calf down to my ankle. It was more distressing than losing my breast. I wasn’t prepared for it.

I sought counselling after the operation

I believed that after the surgery I would have minimal scars that could be hidden. But the scar along my leg was a permanent and prominent reminder of my diagnosis. It was there for all to see.

The multiple surgeries to reconstruct my lost breast was one thing, but for a breast reconstruction operation to suddenly include my leg was too much for me to bear.

I was so traumatised. I couldn't get passed it. It was beyond my control.

I eventually sought counselling to help. It was decided that I should discuss my surgery with the consultant who carried out the operation.

The consultant explained that he was doing everything in his power to give me a breast I would be happy with and that this was extraordinary circumstances. He said that he had managed to salvage two flaps of thigh tissue in order to create a breast for me, and when the flaps started to fail he tried everything in his power to save it.

» Find out more about LD flap, DIEP flap and other breast reconstruction options.

I need further surgeries

Knowing that my surgeon had my best interest at heart made me view my scars in a different light.

I will still have to have further surgeries to reconstruct my breast, as it is not aesthetically pleasing to me. Currently I wear a prosthetic breast to give me my desired symmetry.

The results from the sentinel lymph node biopsy showed that the cancer had not spread. Fortunately, I didn’t need to have chemotherapy or radiotherapy. Instead I will be on tamoxifen for the next five years.

Hospitals still do not cater for the ethnically diverse population they are caring for

During my treatment I noticed that hospitals don't understand that different ethnicities have slightly different needs.

Choosing a suitable prosthetic breast was a challenge. They mainly catered for white skin tones and as a result my brown coloured prosthesis needed to be ordered and shipped in from another country.

It took four months to receive my prosthesis; I was left to wear a white skin-toned one which was not easily disguised against my darker skin.

It left me wondering why hospitals located in areas with such a culturally diverse population fall short of catering for such a vulnerable and emotionally dependant group, especially with something as simple as a brown-coloured breast prosthesis.

I’ve found strength through Black Women Rising

I met Leanne Pero at a Macmillan support group that ran at the hospital where I was having treatment.

I ended up joining the Black Women Rising group and taking part in the project. This meant having photographs taken of our surgery and treatment scars, which were then shown in a gallery in Southwark. Along with our images, we were encouraged to share our stories.

I have found so much strength from taking part in the project. Not only do I feel empowered by the photographs of my scars, but I have met a group of women who have scars too. I feel like I’m not alone which has enabled me to embrace my new journey alongside women with a shared experience.

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