‘NIGHTMARE’ WAIT FOR SURGERY
Janet Harris, 64, said women in Wales needing this important procedure have been ‘forgotten, ignored, dismissed and patronised’. Health correspondent Mark Smith reports
A CANCER patient who needed her breast removed has detailed her horrendous two-year wait for reconstructive surgery.
Janet Harris was diagnosed with the disease in April 2019 and underwent a mastectomy the following month.
A CANCER patient who needed her breast removed has detailed her horrendous two-year wait for reconstructive surgery.
Janet Harris was diagnosed with the disease in April 2019 by Breast Test Wales and underwent a mastectomy the following month at University Hospital Llandough.
The mum-of-two was advised that rather than having a breast reconstruction at the time of the operation, a one-year delay would be a safer option.
But due to the coronavirus pandemic and other factors, she remains in a state of limbo and has been told the breast reconstruction programme in Wales is still “mothballed” with the exception of a few “urgent” cases.
“The women of Wales who have the misfortune to need this service have a raw deal. We appear to be forgotten, ignored, dismissed and patronised,” said the 64-year-old, who has been on the surgery waiting list since January 2020.
“Is this somehow considered to be vanity, a ‘boob job’ rather than the essential part of breast cancer treatment that we were led to believe would be available after adjuvant treatments had taken place?
“We may keep our pain discreetly hidden under uncomfortable prostheses, but it is constantly there.
“I personally avoid looking at my reflection in a mirror as I find it abhorrent. Having to look at other women’s cleavages is excruciating.”
Janet, from the village of Llanmaes in the Vale of Glamorgan, described receiving her breast cancer diagnosis as “life-shattering”.
“Five of my friends have died from this disease, others live with it and its complications,” she said.
“The first friend who wrote to me, who had herself been treated some years before, said three times in her letter ‘breast cancer is s***’. She was right.
“Fortunately, at this point I had no idea just how bad it would be, of the complications that I would experience, the tears I would shed, or the sleepless, despairing nights that were to come.”
After returning from a holiday abroad, Janet was all geared up for a mastectomy on May 22, 2019, with implant reconstruction at the same time.
“However, it didn’t pan out that way,” she explained.
“I phoned the breast care nurse from the airport and heard from her late in the afternoon that one lymph node which had been biopsied was positive.
“Nobody had expected this outcome. It indicated the beginnings of possible spread and on advice that I had been given, effectively ruled out the immediate reconstruction for which I had hoped.
“I had a matter of only hours to come to terms with the implications. It had been suggested that a delayed reconstruction would be safer in this situation due to possible delay in chemotherapy/radiotherapy and possible effects of radiotherapy on an implant. I was bitterly disappointed but determined to put a brave face on it.”
The night before her admission to hospital for the mastectomy, Janet said she collected up her bras, put them in a carrier bag and stuffed them in the back of her wardrobe where they still remain.
“I spent six hours cradling my condemned breast while the surgeon, to my knowledge, did a mastectomy with immediate reconstruction for someone else,” recalled Janet, who described the breast removal as “an assault on one’s femininity, self-image and confidence” .
“The nursing staff were lovely, the other patients quietly encouraging. Hurrah for WhatsApp as friends, colleagues and family sent supportive messages.”
Three weeks after the operation, Janet said she met her consultant again after experiencing symptoms of chest wall tethering and the development of scarring under the arm, known as axillary web syndrome.
She then underwent chemotherapy, coupled with extensive physiotherapy as well as radiotherapy.
She added: “I needed reassurance that things would improve, some hope and a map for restoration in the future. But gaining the attention of those in whom I had placed such faith proved tricky.”
Since the procedure Janet has been wearing a prosthesis for all but sleeping and bathing to disguise the “very obvious asymmetry” from both others and herself.
“Clothes have to be carefully chosen, and one learns to avoid bending forwards to accidentally reveal one’s half cleavage,” she explained.
Janet admitted that the significant delay in her reconstructive surgery makes it impossible to move on from the breast cancer experience. She is now on the waiting list for a lumbar artery perforator flap reconstruction – major surgery which can only be carried out in one centre in Wales, Morriston Hospital.
She added that when Covid-19 hit she accepted that her needs and treatment would be pushed back for make room for more urgent cases.
“I did, however, naively think that when the crisis passed, those like me would be somehow prioritised. Wrong again,” she said.
“Breast reconstruction surgery in Morriston Hospital was mothballed and unlike other types of surgery, has not recommenced, despite low numbers of cases of Covid 19 and hospitalisations in Wales.
“While I fully understand the backlog of cases of all types, new patients presenting and the dilemmas that these present, this does seem inequitable to those waiting for treatment in this particular health board – the only one in Wales able to undertake this complex surgery. “
Janet said she has written to Health Minister Eluned Morgan and representatives at Swansea Bay University Health Board.
“I have also, after seven requests, just received a provisional date for a meeting with Mark Hackett, the chief executive of Swansea Bay Health Board, to raise issue of the situation of women on this list.”
The British Association of Plastic, Reconstructive and Aesthetic Surgeons said this type of microvascular surgery has restarted in some areas of England, although the picture varied widely.
In response, Richard Evans, the executive medical director for medicine at Swansea Bay University Health Board, said: “Firstly, we would like to offer Mrs Harris our sincere apologies for the delay.
“Covid has meant we are not only dealing with a backlog of patients from the past 15 months, we are also experiencing higher numbers of patients with urgent and emergency surgical problems.
“We are prioritising those who need surgery most urgently to prevent loss of life or limb.
“However, we completely understand that everyone who is waiting for surgery is anxious to know when this might take place, and everyone has a compelling reason why they need it.
“We also fully recognise the special significance that reconstructive surgery has for women and the distress the wait is causing.”