Wednesday, 5 April 2017

Weekly Discussion Summary ~ Supporting Women with Secondary Breast Cancer

Summary of our weekly group discussion ~ 5th April 2017

SUPPORTING WOMEN WITH SECONDARY BREAST CANCER

The topic of this week's discussion was ~ 'How can we support someone with secondary breast cancer?'

Not everyone knows that secondary breast cancer occurs when breast cancer spreads to other parts of the body. Also described as ‘stage 4 breast cancer’, or ‘metastatic breast cancer’, secondary breast cancer is incurable and treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible.

Our discussion included women with secondary and primary breast cancer as well as women who have had a recurrence. Women with secondary breast cancer spoke openly about their feelings, including their intense grief on finding out that breast cancer had returned, their challenges, and the different ways they were living rich and meaningful lives with resilience and fortitude.

While women with primary breast cancer fear recurrence, the fears of women with secondary breast cancer relate to progression of their disease, the availability of treatment options and concern for loved ones, especially their children. We heard about the losses that can accompany a secondary diagnosis, for instance, work, independence; that some women feel freed from having to do things they had hated; that some do amazing things and 'live it up'. Everyone, when they feel well enough, described wanting to really make the most of every moment by doing the things that matter most, including travelling and spending time with family and friends.

In terms of support, a number of key things stood out that really make a difference:

• To be supported to get on to lead our lives, as 'normally' as possible.
• To be treated 'normally', to be able to share our highs and lows, to be able to do both fun and ordinary things.
• Practical help can make an enormous difference.
• Knowing we are loved and cared for.
• To be able to have honest conversations with our loved ones about the future, and for our friends and family to be comfortable talking about cancer (we know this is hard - the support for our partners and families is almost non-existent).
• Hardest of all is when those around us seem to want others to pretend it's not happening and, worst of all, are platitudes, saying something like 'you can beat this!' or 'don't worry, we could get hit by a bus tomorrow' just isn't helpful.
• Increased awareness and understanding of secondary breast cancer.

It was shocking to hear about the lack of support offered to women with secondary breast cancer, and, often without access to a designated Breast Care Nurse, having to chase scans and co-ordinate aspects of their care. Opportunities for emotional and psychological support and wellbeing were generally limited, though there were some exceptions, for instance some women described being supported by hospices.

Some, but not all, had campaigned for the needs of women with secondary breast cancer to be understood better, and for many of us, lobbying government is a way to bring about change. It was clear from the experiences shared that secondary breast cancer can occur soon after - and even at the time of - initial diagnosis, as well as many years later.

We are proud that in our group women with secondary and primary breast cancer can stand together in our quest for resilience. Each group has its own fears, and naturally neither group wants to upset the other, but by talking and listening to one another, we can support each other, whatever stage we are at.

If you are a woman with a breast cancer diagnosis and you would like to join our private group, leave your name in the comments so we can get in touch.

Around 35,000 women are thought to be living with secondary breast cancer in the UK. For further information: http://breastcancernow.org/about-breast-cancer/secondary-breast-cancer/what-is-secondary-breast-cancer/how-common-is-secondary-breast-cancer

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please leave your name in the comments.

#ResilienceDiscussion

Thank you Jenny for letting us use your fabulous photo!




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