Woman diagnosed with breast cancer felt 'empowered' by doctors who offered her chance to be part of groundbreaking research
A woman who was diagnosed with breast cancer after discovering a lump in her breast, said she felt empowered by doctors who offered her the opportunity to take part in a groundbreaking piece of research.
Lecia Simpson is one of many who chose to take part in the ATNEC trial to help improve the quality of life for those diagnosed with the disease. ATNEC is a ground-breaking, multi-centre, research trial that aims to improve the quality of life for people diagnosed with breast cancer is being led by University Hospitals of Derby and Burton NHS Foundation Trust (UHDB), in association with University of Warwick Clinical Trials Unit.
The trial is taking place at more than 70 hospital sites across the country, and is being led by Associate Professor Amit Goyal, UHDB’s Clinical Lead and Assistant Clinical Director of Breast Surgery.
When patients are diagnosed with breast cancer, they sometimes present with cancer in the lymph glands in the armpit. Many of these patients receive chemotherapy first before proceeding to surgery. After receiving chemotherapy to shrink the cancer in the breast and the lymph glands, patients return for surgery where all the lymph glands will be removed from the armpit, but this surgery can have long-lasting and unpleasant side effects. In 40% to 70% of cases, chemotherapy works so well that it removes all cancer cells in the armpit. The ATNEC study is looking at whether, in these cases, further armpit treatment (surgery or radiotherapy) is needed.
Associate Professor Goyal said: “Taking all the lymph glands from the armpit can cause swelling which we call lymphoedema. This arm swelling is permanent and happens to one in five patients who have the surgery.
“There is no cure so it’s a lifelong problem for the patient who will need to attend lymphoedema clinics. It can be controlled to some degree by patients using compression stockings on the arm but in addition to the swelling, patients can experience frozen shoulder or pain in that area. All of these problems have an impact on patients’ quality of life, daily activities and work.
“So this is what we want to change - we maybe don’t need to remove all the lymph glands. In many cases once the patient has had the chemotherapy the cancer in the lymph glands will be gone. We therefore wouldn’t provide any extra benefit to that patient by removing the lymph glands because the treatment has worked so well, and the cancer has been removed.”
As part of the study, instead of removing all the lymph glands, Amit and his team will instead take only a few initially to check how well the chemotherapy has worked. If those lymph glands are cancer free, further surgery is not needed and the ‘randomised study’ will then select which patients receive radiotherapy in the armpit.
Mr Goyal said: “We know from previous research that radiotherapy to the armpit causes fewer problems for patients compared to removal of all the lymph glands. For those who don’t have radiotherapy (half will and half won’t) they won’t experience additional damage to the armpit. All patients will be closely monitored for a five year period.
“It is important to stress that if cancer is still present in those few lymph glands, those patients won’t be under treated. All their lymph nodes will be surgically removed.”
Lecia was offered the opportunity to participate in the trial after she was diagnosed with breast cancer following the discovery of a lump in her breast in August last year.
After starting chemotherapy in September 2022 Lecia experienced terrible side effects including Peripheral neuropathy, a type of nerve damage that causes pain, numbness and weakness in her fingers and toes. She said it knocked her "more or less off my feet".
When Lecia was first told about the ATNEC trial she did her research and wanted to think about it for a while, but it was her friend's experience with breast cancer that prompted her to sign up to the trial.
She said: "The reason I went for it is because a friend of mine had breast cancer a few years ago and had all of her lymph glands removed and as a result she has the most terrible lymphedema. She is all clear of cancer now but will have lifelong lymphoedema and it makes her life miserable. She is young and healthy but has the most awful pain.
"When I was diagnosed with breast cancer that was one of the things I was dreading the most. After what I have been through I just want the rest of my life to be as pain free as possible."
Lecia had three lymph glands removed as part of the trial, all of which were clear of cancer. She said the trial allowed her to have a 'less invasive procedure' and she is happy to take part in the research in the hope of helping others in the future.
She said: "I am all for it. When you get diagnosed you are in the hands of the doctors but to still be given a choice over which treatment you receive is really empowering. I think it’s a really positive thing."
Associate Professor Goyal said there is a definite need for the ATNEC study. He said: “A recent national breast cancer patient survey identified avoidance of unnecessary removal of all the lymph glands as the number one priority among breast cancer patients and clinicians, and we are delighted to be leading this important national study.”
Associate Professor Goyal said: “Any change in clinical practice has to be supported by research to prove that it is safe to do so. If successful, this innovative study will help some breast cancer patients avoid pain and long-term side effects, it will change clinical practice and the guidelines nationally and will also be more cost-effective for the NHS, so it is really exciting.”