SECONDARY BREAST CANCER
WHAT IS SECONDARY BREAST CANCER?
WHAT IS SECONDARY BREAST CANCER?
WHAT IS SECONDARY BREAST CANCER?
- Secondary Breast Cancer is also known as Metastatic Breast Cancer, Stage 4 Breast Cancer or Advanced Breast Cancer.
- Secondary Breast Cancer occurs when breast cancer cells spread from the first (primary) cancer in the breast through the lymphatic or blood system to other parts of the body most commonly the lungs, brain, liver, bones, skin.
- Secondary Breast Cancer is treatable but it is incurable.
Mainland UK
WHAT IS SECONDARY BREAST CANCER?
WHAT IS SECONDARY BREAST CANCER?
- Approximately 1 in 8 women will be diagnosed with breast cancer in their life time.
- Approximately 1 in 3 of these women will later develop Secondary Breast Cancer.
- Approximately 1 in 20 will be diagnosed with Secondaries at their initial Breast Cancer diagnosis.
- UK wide Secondary Breast cancer accounts for the death of 32 women each day
- Approximately 1 in 800 men will be diagnosed with breast cancer in their lifetime
HOW DO THINGS DIFFER IN NORTHERN IRELAND? In short, the care delivered and the treatment available is not on a par with England, Scotland or Wales. Read on below...
1. First things first - the words of the health minister
STRAIGHT FROM THE HORSES' MOUTH
In March, 48% of patients commenced their first treatment for cancer following an urgent referral within the 62-day target.
The department target is that 95% of patients should begin treatment within 62 days after an urgent GP referral.
Speaking on Thursday, Health Minister Robin Swann said diagnoses for breast and bowel cancers were at pre-pandemic levels.
However, he warned that the lack of an executive limits his ability to act on waiting lists.
"Without a confirmed budget it makes it difficult for us to tackle the big issues," he said.
Consultant medical oncologist Martin Eatock said it was his impression they were seeing more patients with a later stage of diagnosis over the last 18 months to two years than they did prior to the coronavirus pandemic.
"For some patients it means that they have progressed to a stage where we are no longer able to offer them effective treatments," he said.
At the end of March, 156,270 patients in Northern Ireland were waiting for a diagnostic test - a rise of 13.9% compared to the same quarter the previous year.
These figures take in anyone waiting for a test for any reason and Northern Ireland's record is the worst in the UK.
Cancer Research UK identified eight of the tests included in the figures that are predominantly used for cancer, including gastroscopy, colonoscopy and MRI.
2. SECONDARY BREAST CANCER DOES NOT FORM PART OF THE AUDIT OF HEALTH CARE SERVICES IN NI
Campaigners, have fought for a decade for Secondary Breast Cancer to be included in the audit of Health Care Services, which they say will improve patient treatment and support. Julie Ann Lillis told BBC News NI there was no time to waste and Northern Ireland needed to collect data immediately in order to design services and a future workforce.
It is currently unknown how many are living with Secondary Breast Cancer in Northern Ireland.
UPDATE!!!!!!
"As a direct result of the SEEN TO BE HEARD Campaign, Cancer Focus NI have pledged to fund a Secondary Breast Cancer Audit which will be carried out by the Northern Ireland Cancer Registry. This is a crucial step in ensuring that data is collected and used to inform policy, clinical practice and support of people living with Secondary Breast Cancer here in Northern Ireland"
3. FEWER TREATMENT OPTIONS ARE AVAILABLE IN NI COMPARED TO ENGLAND, SCOTLAND and WALES
4. IN NORTHERN IRELAND THERE IS CURRENTLY ONLY ONE SPECIALIST SECONDARY BREAST CANCER NURSE
There are 5 Health Trusts in NI, only one Trust has one Secondary Breast Cancer nurse, an appointment that was made only in the last couple of years and that is funded by a charity.
At a bare minimum there should be at least one per trust. It is essential that women living with SBC have access to a nurse who will be able to help with specialist information, someone to talk to and help them access the services they need.
The need for more Secondary Breast Cancer nurses has been raised directly with the Health Minister. We shouted it loud and proud in the build up and during the exhibition. A number of the women continue to campaign for this and Cheryl in particular continues to highlight the need. It is likely that any further nurses will also be
funded by cancer charities.
Our NHS in NI is on its knees and whilst providing Specialist nurses to patients living with this disease should really be a basic service, it is much more important to HAVE the service rather than worry about who pays for it.
In our video that accompanies the exhibition some of the women talk about the impact of having no Secondary Breast Cancer nurse specialist has had on their care, their wellbeing and their sense of isolation.
5. WHILE IN THEORY IT IS POSSIBLE TO ACCESS DRUG/TREATMENT TRIALS IN NI, THE REALITY THIS IS NOT THE CASE
Why?
For a start, to be identified for a trial requires a lot more specialist infrastructure than is currently available in NI.
Secondly, if someone is identified as being suitable for a drug trial there are none actually running in NI for Secondary Breast Cancer.
Therefore, any involvement in a trial would necessitate frequent travelling to mainland UK or moving home to be closer to the trial. Such an upheaval whilst living on continuing treatment,
leaving family etc may simply not be possible.
As a result at the time of writing (July 2022)...
there is no-one in Northern Ireland on a clinical drug trial. Please click on the link below to read about the reality of accessing trials in NI.
never assume your gp will recognise symptoms of SBC
Secondary (lobular) Breast Cancer Know your symptoms!!!
DO NOT IGNORE - YOU KNOW YOUR OWN BODY BEST.
There is a general lack of awareness of symptoms that would alert to earlier diagnosis. We are trying to promote the use of these infographics in GP surgeries and for them to be given to anyone with a primary breast cancer diagnosis. Vigilance and knowledge are key. Mammograms do not always pick up primary breast cancer never mind the symptoms of Secondary. Scans are essential and to enable that the patient must be listened to. Unfortunately this does not happen often enough.
Seems like a sensible idea that anyone with a previous diagnosis of primary breast cancer should have a huge red flag and this infographic on the front of their file - regardless of how many years they have been 'free' of cancer. In Northern Ireland after 5 years of follow up scans there are
NO further follow-ups yet approximately 1 in 3 will go on to be diagnosed with Secondary Breast Cancer in the future - even 20 or 30 years later. Often the patient presents to the GP with a cough, shoulder pain or perhaps even tummy problems or headaches only to be given antibiotics or pain killers. Months pass without correct diagnosis the cancer spreads because the correct scans are not being done.
Secondary (ductal) Breast Cancer KNOW YOUR SYMPTOMS!!!
DO NOT IGNORE - YOU KNOW YOUR OWN BODY BEST.
There is a general lack of awareness of symptoms that would alert to earlier diagnosis. We are trying to promote the use of these infographics in GP surgeries and for them to be given to anyone with a primary breast cancer diagnosis. Vigilance and knowledge are key. Mammograms do not always pick up primary breast cancer never mind the symptoms of Secondary. Scans are essential and to enable that the patient must be listened to. Unfortunately this does not happen often enough.
Seems like a sensible idea that anyone with a previous diagnosis of primary breast cancer should have a huge red flag and this infographic on the front of their file - regardless of how many years they have been 'free' of cancer. In Northern Ireland after 5 years of follow up scans there are
NO further follow-ups yet approximately 1 in 3 will go on to be diagnosed with Secondary Breast Cancer in the future - even 20 or 30 years later. Often the patient presents to the GP with a cough, shoulder pain or perhaps even tummy problems or headaches only to be given antibiotics or pain killers. Months pass without correct diagnosis the cancer spreads because the correct scans are not being done.
Some important infographics
