Saturday, 16 March 2019

Weekly Discussion Summary ~ How it feels to be diagnosed with secondary breast cancer

How it Feels to be Diagnosed With Secondary Breast Cancer

Alone....Devastated...Isolated.. Shocked... Abandoned....Unsupported.

These were just a few of the words used by women living with secondary breast cancer to describe their feelings in this week’s discussion.

A few women had been recently diagnosed with secondary breast cancer after learning to come to terms with their diagnosis of primary breast cancer, others had been diagnosed with secondary breast cancer some years ago, and a smaller number had received the news that they had secondary breast cancer when they first presented i.e they did not move from being treated for primary breast cancer and then go on to develop secondary breast cancer, and instead had to deal with this shock immediately.

We heard that living with secondary breast cancer feels like charting unknown territories as women try to live the best life they can, and live it to the full, all the while knowing that it is not going to be as long as they hoped, that maybe they won’t get to see their young children, or their grandchildren grow up.

We heard how incredibly lonely and heartbreaking it feels not to be offered the same amount of support and attention received during treatment for primary breast cancer.

We heard how marginalised women feel when there is so much emphasis given to “moving forwards” after active treatment. There was a plea to remember that women with secondary breast cancer only finish treatment when it stops working and no options are left for them.

We heard that women with secondary breast cancer are afraid of scaring or upsetting women who are currently in the position of being “NED”. We heard that they feel guilty for their feelings when they hear about others moving on with their lives when they cannot. 

We heard how it feels to try to live with uncertainty about the pace of progression. We heard that women do not want to be defined by their disease; they do not want to be seen as “terminal”. They want to be valued for who they are, to be loved and supported by their family and friends. They do not want people to pretend or avoid their situation, they need their position to be held and validated but they also need support to continue to participate in every day life, to be “normal.” Women strive to live the best in every moment, even if that moment was not what they had wished for.

Some women manage to continue working, others have had to reluctantly relinquish careers. Women relayed an experience of long periods of stability in their health, sometimes punctuated by periods where they are very poorly, perhaps with fatigue, perhaps following surgery or having had cyber knife treatment, for instance. Whatever stage women are at, they continue to contribute to their children, families and communities.

We heard that women find it hard to cope with the limited understanding they encounter about secondary breast cancer. This widespread ignorance is isolating and they have to make difficult choices about what to share and how to present themselves.

We heard women share that when they were first diagnosed they thought they would never be happy again and of their surprise that it is possible to experience joy alongside sorrow. We heard of the challenge of balancing profound sadness alongside the paradox of sometimes forgetting one is ill at all. One woman told us about her idea of living for three years and how she thought “three years, that’s not so bad, it’s a thousand days - I can do a thousand nice things”. So, she does nice things whenever she can. 

Naz told us that there is little research into the quality of psychological well-being in secondary breast cancer, but what there was highlighted three main points: 

i) the quality of care is low or non-existent (but improving) for women with secondary breast cancer, 

ii) that psychological vulnerability is much higher, but, 

iii) cancer related expressiveness (ie sharing emotions) can help ease some emotional burden. 

In short, the psychological cost weighs heavy, and there is disappointment at the level of care invested in secondary breast cancer.

A few of us reported coping better when they’ve received ‘good quality’ care from a breast cancer nurse or their oncologist.

How can we help a friend or someone we know who has been diagnosed with secondary breast cancer? 

Those of us with a diagnosis of primary breast cancer draw on our experience to be supportive, to listen and hold hands, we try and put aside our survivor’s guilt, enjoy our friendship, do fun things, but be there for hospital appointments and the worry. A few of us shared having spent special times with our friends whose health was failing. Our love is unconditional.

At BRiC we do not draw a line between primary and secondary and instead see both on a continuum. We understand that having a safe and non-judgemental place where we can share our deepest fears can help - a place to talk, to cry and to nourish. 

We are all ears and eyes. We are listening.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via Facebook. 

The photograph is kindly lent to us by Diane, who was given this photograph by a woman with secondary breast cancer: the tree represents how she felt when she was told it had recurred. The healthy trees in the background are her family.

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