I had to wait FOUR years for a breast reconstruction after my mastectomy, due to secret postcode lottery EVERY cancer patient must be aware of
Key to that was reconstructive surgery after her left breast was removed in January 2021 when a tumour had been found. Studies show that for many women who have a mastectomy, breast reconstruction restores self-image and has a powerful effect on their psychological wellbeing.
While many undergo reconstruction at the same time as the mastectomy, not everyone is suitable. Some may be at risk of the cancer recurring and need to wait around two years in case further surgery is needed; others may be judged unable to withstand the major surgery involved and the lengthy recovery that follows.
In Laura's case, after the breast removal she needed radiotherapy, which can cause the rebuilt breast to become hardened and misshapen. She was told the NHS waiting time for reconstruction surgery following treatment would be no more than 12 to 18 months.
In fact, it was nearly four years before Laura underwent the surgery.
'At first, I wasn't concerned about getting the reconstruction immediately - I was grateful my treatment had been a success so I just got on with it,' recalls Laura, 43, a secondary school teacher from Rugeley, Staffordshire.
Experts say the long delays are due to a complex mix of factors - from a shortage of medics with the right experience to a 'postcode lottery' where women in remote, rural areas are much less likely to have access to the treatment they need than those closer to centres specialising in this type of surgery.
Laura Wilson had to wait nearly four years for breast reconstructive surgery following her mastectomy in 2021
Studies show that for many women who have a mastectomy, breast reconstruction restores self-image and has a powerful effect on their psychological wellbeing
Breast Cancer Now is calling for more surgeons to be trained in such procedures, as well as greater theatre capacity to tackle backlogs. Meanwhile, women such as Laura are left in limbo.
'Remaining on a long waiting list for delayed reconstructive surgery can take a huge toll on a woman's emotional wellbeing and body image,' explains Louise Grimsdell, a senior clinical nurse specialist with the charity. 'They are often struggling to adjust to how their bodies have changed, as well as the emotional impact of their breast cancer diagnosis.'
Laura, who lives with her partner Scott Philpott, 44, an electrician, says the hardest part 'was feeling like my life was always on hold'.
'As I didn't know when the operation would be, I couldn't make any plans,' she says. 'I even put off moving jobs in case a date came through. It was always hanging over me.
'Initially, I was told the delays were partly down to Covid backlogs, but there was a point, after I'd been waiting for around 18 months, when I thought they'd forgotten about me.'
Around 55,000 women a year are diagnosed with breast cancer and about 14,850 undergo a mastectomy. Roughly two-thirds of those who opt for reconstruction have it at the same time and the rest delay it, says Breast Cancer Now.
Reconstructive surgery is done with either an artificial implant or using tissue and blood vessels from the patient. Artificial implants are a relatively straightforward procedure, taking around three hours and requiring only one surgeon and shorter recovery time.
But autologous reconstruction (where doctors use the patient's own fat and tissue, harvested from elsewhere on the body, to rebuild the breast) is a highly complex operation, requiring two or three specialist surgeons trained in microsurgery.
'It can take six hours or more,' says Joanna Franks, a consultant breast and oncoplastic surgeon at the London Clinic. As a result, the lengthy waits are mostly suffered by women who have chosen an autologous procedure and who, for whatever reason, did not have a reconstruction at the same time as their mastectomy.
Naren Basu, a consultant oncoplastic breast surgeon at University Hospitals Birmingham, says the backlog is partly due to a shortage of surgeons with the specialist training to carry out such operations, as well as the necessary theatre capacity for the lengthy procedures. But it's not the only factor.
'Guidelines say that all women should be offered all options but in reality a woman who lives in a remote rural area may not find it easy to access surgery for an autologous breast reconstruction,' says Mr Basu.
Lobbying by Breast Cancer Now and some health professionals has resulted in NHS England including breast reconstructive surgery in its recent referral to treatment target - this sets out that surgery must happen within 18 weeks of a surgeon giving the go-ahead for the treatment.
Naren Basu, a consultant oncoplastic breast surgeon at University Hospitals Birmingham, says the backlog is partly due to a shortage of surgeons with the specialist training to carry out such operations
The charity is also funding a pilot scheme in partnership with the British Association of Plastic, Reconstructive and Aesthetic Surgeons to help train another UK plastic surgeon in breast microsurgery, which it hopes represents a step, however small, towards meeting the shortage.
Waiting lists have also grown as delayed reconstructions are 'unfortunately bottom of the list', says Mr Basu. He says 'immediate' reconstructions take priority, then reconstructions done when a woman is having a preventive mastectomy due to a high genetic risk of the disease. Delayed reconstructions are the lowest priority.
At least 2,255 women are waiting for autologous reconstructive surgery following a mastectomy, according to a study in the Journal of Plastic Reconstructive and Aesthetic Surgery in September 2024.
It was in 2020 when Laura first noticed a 'strange' pain deep in her left armpit and chest.
As her mother had been diagnosed with breast cancer, Laura went to her GP, who examined her but couldn't find a lump.
But the odd pain persisted - 'it felt as though it was deep inside me,' recalls Laura - 'it was almost as though my heart was hurting.'
On one occasion, she rang 111 and was transferred to hospital by ambulance with suspected heart problems, but tests revealed nothing.
However, soon after, she found a lump near to the nipple - so returned to her GP.
Following ultrasound tests and biopsies, Laura was diagnosed with a 2.2cm aggressive tumour - she also had ductal carcinoma in situ (DCIS), a pre-cancerous condition where abnormal cells grow in the milk duct lining, which covered a 10cm area.
As well as a mastectomy to remove the entire left breast, followed by radiotherapy and chemotherapy, Laura was given hormone treatments to reduce her oestrogen levels, causing debilitating menopausal symptoms of hot flushes, aches and pains. 'I felt like an old lady,' recalls Laura, who was still in her 30s at the time.
'My friends were having babies - and Scott and I had been due to start IVF when I was diagnosed.
'It felt like not only was I dealing with a serious disease but all my hopes and plans for the future had been snatched away.'
Her treatment concluded, successfully, in November 2021.
'It then became really important for me to try to get my body back to normal.'
She was keen to get back into her regular gym routine but her temporary prosthetic breast made running or other vigorous movement uncomfortable.
She struggled to find clothes - her remaining breast was a size 34DD. 'My prosthetic breast didn't fit very well so I was often having to adjust it. I became paranoid people could see if it was off-centre. I felt I couldn't put my cancer behind me until I had my reconstruction.'
Finally, in November 2024 - nearly four years after her breast removal - she underwent a six-hour procedure using blood vessels and fat from her stomach to build a new breast.
'The first moment I looked down and saw I had two breasts again was amazing. I felt whole - finally,' she says.
Now she's back to exercising five times a week and wearing the clothes she loves.
'My hair's grown back after the chemotherapy, I'm fit again - and I finally feel back to being me,' she says. 'I am so grateful to be alive but this should never have taken so long.
'For me, having both breasts wasn't about my appearance, it's about my internal identity too and the way I want to live my life.'
For more information visit breastcancernow.org
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