In February 2014 I was diagnosed with secondary breast cancer.  As like my primary breast cancer diagnosis, it was a huge shock.  Many people don’t understand secondary breast cancer or that it doesn’t actually come back in your breast.  That would be classed as a local recurrence or another primary breast cancer.  Mine came back in my lymph nodes in my neck and I ended up with a couple of small spots in my sternum.  These are the main places it will metastasize  to:-

  • Bones
  • Liver
  • Lungs
  • Lymph nodes
  • Brain

 

In a way, I was lucky not to have any of the major organs affected. But yet it’s still hard to comprehend and come to terms with, yet life carries on.  I hope that it can be controlled and that it doesn’t progress further for a while.

I have treatment every 3 weeks for life, forever.  I will have to continue this treatment otherwise the cancer will return and spread so that’s why you have to continue with the regime.  The treatments hope to control the cancer.  Again people don’t understand this, yes I may have hair on my head and be able to exercise but I have an incurable disease and that’s why I have to continue going to The Christie every 3 weeks.

I have my bad days, days when I get a migraine from the treatment and I cannot function, aches and pains due to the drugs that I’m on, pain from the peripheral neuropathy in my toes and fingers but currently I’m doing OK.

The figures are shocking, 12000 people die every year, from secondary breast cancer, 1000 die every month in the UK alone.  Worldwide around 1430 die EVERY DAY.  There is no cure.  Yes, people are living with and beyond cancer but the average of 3 years life expectancy with secondary breast cancer is still hard to accept.  This is not yet a chronic disease and people are dying much too young.

I created an infographic to explain this and to help primary patients recognize symptoms of secondary breast cancer.

Click the image below to view/download as PDF:

 

If you do experience any of these symptoms then don’t hesitate your Oncologist as the sooner you get treatment the better.

There’s lots of information on the various Breast Cancer charity websites about secondary breast cancer and special days or meetings for people living with this disease.  You will find the links to the charities and organizations in the links section of the web site.

Lastly, research is critical to getting better drugs to live longer to eventually make this a chronic disease like for example diabetes or asthma but we are a long way from that yet.  The ideal is a cure.  Who knows what will happen and we all live with hope.

 

Here are some slides from a Manchester Cancer funded event from The Christie hospital that I have been involved in and acknowledged.  It is a great opportunity to attend if you have secondary breast cancer and are treated at The Christie – see the recent presentation Living with Secondary Breast Cancer – Health & Wellbeing days for patients living with active disease if you wish to find out more then please contact The Christie Secondary Breast Cancer Nursing Team on tel 0161 446 3996

Find out more at some of the Breast Cancer related websites…
or learn about the various Breast Cancer trials…

Some useful links for secondary breast cancer organzations

ABC Global Alliance – Improving and extending the lives of women and men living with Advanced Breast Cancer in all countries worldwide and to fight for a cure.  We will also raise awareness of ABC and lobby worldwide for the improvement of the lives of ABC patients.

Europa Donna – The European Breast Cancer Coalition.

MBCAlliance (USA) – patient advocates including people diagnosed with MBC (secondary BC) and caregivers who act as a taskforce for an executive group

METAvivor (USA) – non profit organization dedicated to increasing awareness of advanced breast cancer and equity in research for patient support.

METUPorg (USA) – Committed to changing the landscape of metastatic breast cancer through direct action – this is a USA organization but I linked with them and have created METUPUKorg

METUPUKorg (UK) Committed to ending death by metastatic breast cancer through direction action demanding research funding for a cure.