Wendy had a double mastectomy in 2017 and remained flat.
“When the consultant told me, I remember crying and saying that I have 2 young children, I am a single parent. Who’s going to take care of them? My children need me.”
Shamilla describes being in a state of shock when she was diagnosed in 2015. But despite the gravity of the news, there’s often not much time to process before the decisions about possible treatments begin. And for those who have surgery, the decision-making doesn’t end there.
Dr Shelley Potter, an Associate Professor of breast cancer surgery at the University of Bristol, has spent years talking people through their reconstructive options after surgery.
“Ultimately, I think it’s a very, very personal decision. And it’s what what’s right for the person at the time,” says Potter. “But there is a lot to consider.”
We spoke to 3 women who have undergone different types of surgery to either treat breast cancer or reduce the chance of a diagnosis. Each of them has a unique story to tell.
Shamilla‘s story – mastectomy with flap reconstruction
Shamilla was diagnosed with grade 2 breast cancer in her right breast in October 2015.
Within a week of her diagnosis, it was confirmed that she would need to have a mastectomy, a surgery to remove all of the breast, followed by chemotherapy.
Shamilla describes how she found it hard to process some of the initial conversations with the cancer specialist because she was still in a state of shock. But she found the leaflets they provided helpful, particularly when it came to deciding what procedure she would have.
“I was provided with 2 options,” she explains. “With the type of cancer I had, I was advised on the best options for me, and a major factor was recovery time and knowing which one would be more effective at getting rid of the cancer.”
After discussions with her oncologist, surgeons and Macmillan breast care nurses, Shamilla decided to have a latissimus dorsi (LD) flap reconstruction, an operation that involves reconstructing the breast using the patient’s own body tissue.
Wendy’s story – double mastectomy, remaining flat
Wendy was first diagnosed with breast cancer in 2009, when her children were 8 and 10 years old.
Initially, Wendy underwent a lumpectomy, a treatment to remove the cancerous lump and some healthy tissue around the cancer followed by radiotherapy, and 5 years on Tamoxifen.
“The annual scans came back as normal each year and all seemed good,” she says.
But during a regular examination, she became aware of some tenderness around her scar. After various consultations and tests, new cancerous cells were found in the same breast as previously.
“I was told that a single mastectomy was required,” Wendy says. “But after much discussion and consideration with my husband and the surgeon, I asked to have a double mastectomy as by this point, I felt as though my breasts were “ticking timebombs” and wanted to be rid of both of them, even though the cancer was only in one of them.”
A bilateral mastectomy, also known as a double mastectomy, is an operation to remove all of both breasts.
Wendy had surgery in January 2017. She describes how most people assumed she would have a reconstruction. “But when I looked into it in more detail and considered all of the new surgery, tissue removal and extra operations required post mastectomy, I decided it was not for me.”
Instead of wearing a prosthesis or have a breast reconstruction after surgery, Wendy chose to go flat. “I have had the most amazing tattoos inked across my chest, to cover the scars, which I am immensely proud of.”
Sasha’s story – double mastectomy with reconstructive surgery
A double mastectomy is also offered to women who carry a genetic fault (mutation) known as a BRCA mutation, which increases a woman’s chance of developing breast and ovarian cancer. This is the case for Sasha, who was first told she carried a faulty version of the BRCA2 gene at the age of 19.
“Initially I was petrified as I wasn’t aware what that entailed. But once I spoke with my mum, it made everything feel better and I’ve managed to get my head around it.”
For Sasha, surgery was discussed as an option soon after the gene fault was found, but because of her age, she was advised to take some time to consider the options.
It was 3 years on when she began to have conversations about the different surgeries available to her. “I had a lot of support from all my family and my partner in regard to making the final decision to go ahead with the surgery,” she says. “My mum was a huge influence for why I went ahead with this surgery as she went through it a few years prior, and sadly lost her battle with cancer.”
Sasha’s mum Annie was a community care worker who sadly died in 2018 after being diagnosed with breast cancer and finding out she had a faulty BRCA2 gene.
“From the moment mum told me this was something I could do, I was on board,” says Sasha. “Mum wanted me to have it, but she didn’t want to push me. The genetics team at the Leicester Royal Infirmary were brilliant. They often advise young people to think about it and come back but I was quite headstrong, so they went with it.
“Mum was really young to get cancer and I didn’t want to be in the same situation.”
Sasha had a double mastectomy to remove both breasts in August 2019 and her reconstruction surgery took place just before lockdown in March 2020.
How do you make a decision?
There are different types of breast surgery, which depend on the person and the cancer. Dr Shelley Potter, explains, “it’s essentially dependent on how much disease someone has in their breast.
“When you’re offering women breast-conserving surgery (where you don’t remove the whole breast), what you need to think about is how much tissue you may need to remove in relation to the size of the breast. For the majority of women who have breast conservation, they need to have radiotherapy as well.”
Did you know?
Cancer Research UK were involved in some of the early work around developing breast-conserving surgery. We supported the work of Geoffrey Keynes, who pioneered the process of the lumpectomy at Barts Hospital in London in the 1930s, and later funded pivotal trials at London’s Guys Hospital that proved that this technique, combined with radiotherapy, was as effective as radical mastectomy in treating breast cancer.
Building on Keynes’ work, we helped fund a breast cancer clinical trial in the 60s and 70s that laid the foundations for improving surgery for women with early stage breast cancer.
In cases where someone has a larger area of disease and it’s not possible to preserve the breast, then they need to have a mastectomy. “And then the options are a simple mastectomy and going flat, which for some women is totally the right thing to do. It’s the quickest operation with the quickest recovery. Or reconstruction, which can either be implants or tissue reconstruction.
But as well as the logistical factors that may affect what surgery is possible, such as whether you smoke and your BMI, there are lots of other things to think about, explains Shelley. “I think it can depend on how someone feels about their breasts. For some women breasts are very important to their femininity and identity. For other women, it’s less of a consideration.”
It’s also important to consider whether someone will need any additional cancer treatments following surgery. Sometimes people prefer to have all their treatments upfront, whereas others would rather have the simplest operation first, finish their treatments and then re-visit further surgery when they’re ready.
“But equally,” Shelley continues, “it’s important to think about things like hobbies, what people want to achieve out of their reconstruction, and how much time they’ve got to invest in their recovery. Unfortunately, a lot of women get breast cancer at very busy times in their lives when they’ve often got small children. It’s a really complicated decision.”
The road to recovery
Although most people recover from breast surgery without major side-effects, the healing process can take time, and there may be problems along the way.
“For breast-conserving surgery that just removes the cancer, it’s normally a day case surgery, and people should be feeling themselves within a few weeks,” says Shelley. “The same goes for a mastectomy, often they’re up walking the following day and recovering in a couple of weeks.”
Shelley explains how for reconstruction, if an implant is placed under the muscle, recovery can be slightly longer and for reconstruction using the patient’s own tissue, “it’s a much slower recovery as it’s a much bigger operation.”
For Wendy, despite opting for a mastectomy without reconstruction, recovery was difficult. The breast that had originally been operated on and undergone radiotherapy did not heal and she experienced buildups of fluid (seromas) that required draining. After multiple visits to the hospital, it was decided that she would require follow-up surgery to prevent any further damage.
“This was heartbreaking after all of the time and effort I had spent caring for my mastectomy scars, cleaning and bandaging them each day, rubbing them with oil, only to have the chest sliced open and to start all over again.”
Shamilla recalls how she felt immediately after the surgery. “I was determined to get up and walk to the bathroom even though I had a catheter attached. The nurse said that I may not be able to walk as I had low blood pressure and was very weak. But I was so adamant that I needed to do this myself.
“In the afternoon I walked to the bathroom and back with the nurse. I was very lightheaded, but I felt so good that I’d taken the next step toward getting better.”
As well as the physical healing, there may be a period of emotional recovery, adjusting to how your body feels and looks.
Processing changes to your body
“It’s a big change, and the recovery can be emotionally challenging,” says Shelley, “so we do take that really seriously. And if there are signs people are struggling, we have a very good psychology service that we refer people to, and they can talk things through, we want to help people with their expectations.”
For Shamilla, it was important for her to stay active and keep a positive mindset. But it could be difficult at times.
“At first, I was even terrified to have a look at my operation in the mirror as I did not know what to expect,” she says. “However, when I did find the courage to have a look, I felt proud of myself for getting through this. I was happy with the results from the surgery and the scars I did have were like a trophy.”
Feeling proud is a feeling that unites all 3 women.
“When I am on holiday on the beach or by the pool I wear a tiny vest or top when I am strolling around, as I would have done when I had boobs. I then remove the top when I am lying sunbathing, just as I would have done when I had boobs,” says Wendy.
Once her scars had healed, she initially considered wearing a padded bra under her clothes, but then decided against it. “No one has ever made a negative comment or given me a disparaging look. In fact, the very opposite. Many times, I have had people compliment me on my tattoos and complete strangers telling me they admire my bravery.”
Wendy’s daughter was finishing her art degree around the time she had her mastectomy. “I was lamenting the fact that I had all of these beautiful tops and lingerie that I couldn’t wear anymore so for her dissertation she came up with the outstanding idea of creating a way to modify your favourite clothing so you can still wear it post-mastectomy,” she says. “I was her model for the project and we found that all you need is a good seamstress and a bit of imagination, and you can still wear your favourite items with pride.”
Sasha describes how it took time to get her head around what her body had been through. “When I started to feel more myself again it was still such a strange feeling, as some of my clothes didn’t fit as they did before,” she says. “But as time went on, I appreciated what I went through and started to feel more confident in myself.
“I do still have days where I feel self-conscious with my appearance, but I just remember so does everyone else.”
For each of these women, their experience with breast cancer and breast surgery has been unique, and looking back at that decision over time can stir up different emotions.
“Even after all these years, I still think that the surgery was the best option for me,” says Shamilla.
For Wendy, the process involved coming to terms with what matters to her. “I’ve learnt that my peace and contentment has nothing to do with having boobs. It’s not what I look like on the outside that counts, but how I deal with life in my head and my heart that brings me happiness – and that’s the area I work on,” she says.
Reflecting on her experience, Sasha described a similar feeling of peace and gratification after her surgery. “Nothing has changed for me from day one, when I was 19, to now being 24,” she says. “I’m so grateful I went ahead with surgery and feel such peace of mind with myself knowing I made the right decision for me.”
If Sasha was to give one piece of advice to people who are going through something similar, it would be to not feel rushed into anything. “Please don’t be afraid to ever reach out for any help or guidance, it’s always offered to those that need it.”
Thanks to Shamilla, Wendy and Sasha for sharing their experiences with our Media Volunteer Liaison team.