Helen shares her experience with breast reconstruction, including her difficulties with the expander implant. Since having a DIEP flap reconstruction, she finally feels like herself again. She’s now working to improve the experience for other people.
Can you tell us about your breast cancer diagnosis?
I was diagnosed with invasive breast cancer in my right breast in August 2018. Due to the multifocal nature of the tumour, I couldn’t have a lumpectomy. A month later, I had a on my right breast.
Everything was a bit of a blur. I just wanted the cancer gone as soon as possible. I was told that the operation would be quick and straightforward, and that it had the fastest recovery time out of the reconstruction options. So, I agreed to have it done.
How did your reconstruction go?
The implant was expanded in stages. As soon as the final expansion was complete, I could see that my breasts weren’t symmetrical.
I had surgery to reduce the size of my left breast in 2020, after being put on a waiting list. But even after this surgery, there was still a substantial difference in the size and shape of my breasts. I hated seeing myself in a mirror.
Over time, the implant became hard, lumpy, and painful. It was like a bowling ball stuck under my skin.
Did you have any further treatment to improve things?
I contacted the breast unit in November 2021 and was given an appointment with the breast surgeon. He was reluctant to suggest any further treatment at first. But eventually he agreed to refer me to a plastic surgeon.
Unfortunately, my referral went missing, and I wasn’t seen until a year later in November 2022.
After assessing me, the breast plastic surgeon put me on the waiting list for DIEP flap surgery. DIEP flap reconstruction uses a flap of skin and fat from the lower abdomen to form a new breast shape.
It’s a long and complex operation. There aren’t many surgeons trained to do this type of surgery, so I knew I would have to wait. But just being on the waiting list made me happy.
How are you now?
In May 2024, I finally had my DIEP flap reconstruction. It all went well and the surgeon was remarkable. I now have 2 breasts that are symmetrical, soft, and feel like part of my body. I’m pain free and loving my new look.
I feel like myself again for the first time since my cancer diagnosis in 2018. It was a long process, but the outcome is so fabulous that it’s all been worth it. All that’s left is my nipple reconstruction when my new breast is healed.
I’ve also got involved with the Task and Finish group at Breast Cancer Now to improve access to breast reconstruction for other women.
Can you tell us about your work with the Task and Finish group?
The group was set up by Breast Cancer Now in January 2023, after it released its ‘Delivering Real Choice’ report. The group is made up of surgeons and people with lived experience of breast cancer. We want to use our expertise to improve breast reconstruction services.
1 of our key aims is to reduce the waiting lists for surgeries like DIEP. We want to secure more funding for training in DIEP and promote the training available. I’ve brought my own experience to the group, telling them about how my long wait for surgery impacted me.
I’ve been so impressed by the work of the group. I’ve attended meetings as a patient voice for the Recon Supporter group, which is made up of people who’ve had reconstruction or are awaiting surgery. We bring the experience of patients to the Task and Finish group, and I’ve felt very privileged to be part of it. I also tell supporters about all the work going on behind the scenes by this wonderful group of professionals.
I have left a donation to Breast Cancer Now in my will so they can continue the fabulous work they’re doing within the Task and Finish group, among the other areas they support.
What advice would you give to women about reconstruction surgery?
My 5 pieces of advice are:
- Thoroughly research different types of surgery to decide which is most suitable for you. Read all of the leaflets you’re given, and look at before and after photos
- Talk to the breast surgeon and plastic surgeon who can advise you on the best course of action
- Try not to rush into a decision. If you’re considering DIEP surgery, be prepared to be on a waitlist
- Eat well and exercise. If your BMI is too high, your surgeon might not take the risk of performing such a long and complex surgery
- Talk to others. I joined the Facebook group Diep Reconstruction UK. People talk about their experiences and share their photos, feelings and frustrations. It’s an incredibly supportive group
Supporting women who have breast reconstruction
We want to make sure that women get access to the right type of reconstruction at the right time for them. Learn more about our work to improve breast reconstruction services.