Hello my name is…

Jo Taylor, Service User Representative on GM Cancer Breast Pathway Board

Everyone knows that October is not just Halloween and pumpkins but Breast Cancer Awareness Month!!! 

In this blog, I want to educate you about another kind of awareness! 

Secondary breast cancer, also known as metastatic, advanced or stage four breast cancer, occurs when breast cancer cells have spread from the breast to other parts of the body, such as the bones, lungs, liver or brain. Secondary breast cancer is not curable but it can be treated. There is the possibility that you may develop Secondary Breast Cancer after treatment for a cure. 

So, I want to raise awareness of Secondary Breast Cancer!

We need to be aware of any changes and report them back to our clinical team for them to be checked out.  I know you will already be on high alert if you’ve had a primary breast cancer but you have to be realistic about this and even though it’s scary I’d say the sooner you get any new persisting issue checked and dealt with the better! 

Patients diagnosed with secondary breast cancer will be on lifelong treatment but with treatments developing, patients can live much longer than the median 2-3 year.  Of course the disease is systemic BUT there is the possibility of periods of stability with the disease, sometimes even no evidence of any active disease at all!

It is the clinicians “duty of care” to inform patients of this, yet many patients are not told of the risk.  I have met patients who just think that SBC comes back in the same or other breast.  Misinformation is stopping people from being able to be treated earlier.  This was why I have pushed for the infographics to now be adopted by NHS England.  Patients hopefully, on their own pathway of personalised care plans, will have these risk and red flag symptoms discussed and it should be raised a few times along their pathway at certain points.

Please take a look at the signs and symptoms to be aware of and contact your clinical team if you develop any of them:

I have had many patients contact me to thank me for sharing the infographic as it has helped them.  I’ve had patients contact me to say that they have just been diagnosed with secondary breast cancer and if it wasn’t for the infographic then their clinician would not have investigated it as they themselves pushed the need for further tests.

So we HAVE to be aware.  There is no use burying our heads in the sand.  The shock of a diagnosis of cancer is awful and so I wouldn’t want fear to stop you from doing anything in their life but for people to be well informed that they can recognise this for what it is – awareness!!

Research is changing life expectancy.  I am living 5 years out of my diagnosis (with effective treatments and surgeries) and I hope that I can continue to live like this with effective drugs and also having a good Quality of Life for as long as possible.  People walk past me in the street and have no idea I have incurable cancer.  I still walk and exercise to the best of my ability and work hard with my website, retreats and patient advocacy work.  I will continue for as long as I can do that as I feel it helps me also cope not just with the physical side but the mental side of dealing with an incurable illness.  We have to deal with it in whatever way we can. 

Peer support is hugely important and I have lots of friends who are the same and we just “get it” and it’s why we support each other. 

Research is now showing that being diagnosed earlier can change some outcomes and I have heard talk at conferences like ESMO (European Society of Medical Oncology) about “oligomets” (small and fewer metastases) and has even had discussions that patients can be classed as “cured” as living in the top limits of the median expectancy without relapse.

There are estimated 36,000 people in the UK living with secondary breast cancer and we do get a raw deal due to this figure of 2-3 years imposed on us as we feel written off, forgotten and ignored.  But we need investment and many of us are living full lives, many still working full or part time.  We matter.

To download the PDF versions of the symptoms to be aware of please visit: https://www.abcdiagnosis.co.uk/about-abcd/secondary-breast-cancer/

To find out more about Breast Cancer visit: https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer

Jo Taylor is 50 and was diagnosed in 2007 with Grade 2 HER2+ primary breast cancer at 38 whilst on maternity leave (with a 5 month old and a 2 ½ years old).  7 years later she was diagnosed with secondary breast cancer which had spread to her lymph nodes and sternum, her children are now 13 and 15.

Jo runs a website for breast cancer www.abcdiagnosis.co.uk which includes a blog; she is a patient advocate, a user involvement representative for MacMillan and GM Cancer and runs exercise retreats for breast cancer patients.  She also is the founder of METUPUK www.metupuk.org.uk a patient advocacy group which aims to promote metastatic (secondary) breast cancer as a chronic illness and support patients living with MBC to gain access to the best medicines to prolong and improve quality of life working to their objectives and strategy.

Jo also created the SBC infographic to raise awareness about red flag symptoms of secondary breast cancer that has been adopted by NHS England and shared through the cancer alliances – a patient story book OUT SOON will be available FREE in clinics across the UK