The Emotional Impact of Secondary Breast Cancer - Community Stories Part 4

Living with secondary (metastatic) cancer is challenging. You will deal with a variety of emotions, such as fear, sadness, anxiety, anger, or hopelessness. Sometimes, people find it difficult to express how they feel to their loved ones. Your loved ones might also need help coping. Having a family member or friend with metastatic cancer is challenging, especially for people who help care for you.

Talking about fears and concerns is important, even when treatment is working well and you have hope. 

We opened this subject up to our ‘2nds Together’ community to find out more about the ‘emotional impact of secondary breast cancer’ and are sharing stories from Jan and Maggie this week. 

Thank you. 

Questions:

How long have you been living with secondary breast cancer?

What is the emotional impact of this disease for you and your family?

Do you have any coping techniques or advice you’d like to share?

How long have you been living with secondary breast cancer?

I’ve lived with SBC for two years and three weeks today. That’s over a year beyond what was anticipated and I’m still on my first line treatment (capecitabine) which is valiantly holding things in check. My cancer is Triple Negative, hence the pessimistic prognosis, and affects me in two ways. I have a tumour in my left medial canthus (behind the bridge of the nose), affecting my eyelid so I look like I’m recovering from a confrontation with Tyson Fury. I also have multiple subcutaneous skin mets, mostly the back of my neck and chin. They come and go and currently are “nothing life threatening” though two are steadily growing and one will soon be biopsied. There is no pain or discomfort so I feel I have it quite easy. My oncologist disagrees. They have never seen this before, despite being a Regional Centre of Excellence, and are perplexed by my TNBC not conforming to type. I am unique. I am grateful to my TNBC for being an awkward beggar but I also feel a bit alone in this strange world.

What is the emotional impact of this disease for you and your family?

I think I used up my store of emotions with my primary breast cancer (2018-19) and I feel quite stoical about this. I still haven’t cried. When I got my diagnosis over Zoom, I wasn’t expecting it but nor was I surprised. My main concern was how to tell my husband, who’d really struggled with my primary experience. He doesn’t do emotions so the damage lies deep down. And that in fact defines the emotional balance in our relationship: me phlegmatic, him already grieving; me in need of emotional support, him unable to provide it; me looking for support for him, him refusing to cooperate. He’s never been one to ask for help and I knew it would be a struggle but I didn’t realise how badly it might affect me. I can’t fault him on a practical level - he virtually runs the home now - but his pain is unreachable, he is unresponsive and I carry a burden of guilt that my condition is the cause of it. That’s painful. 

If I feel anything else, I feel lonely and isolated because it’s rare to find someone who can truly understand what living with this condition actually means. Fortunately I belong to a Secondary Support Group which has been an absolute boon (even if I am at least 30 years older than most of the members!). SBC is a great equaliser.

Do you have any coping techniques or advice you’d like to share?

My advice would be not to make any assumptions about SBC. They generally fuel our fear. I have one of the most aggressive forms yet, with chemotherapy, it’s not conforming to type. There seems to be no precedent and no one has much idea of what the future holds. Obviously I’m inordinately proud of my cancer for finding its own course -  there were expected time limits but those have been and gone - and I’m more concerned about side effects than I am about the cancer.  Fatigue! Sometimes I could happily turn vampire just for some nice red corpuscles! 

What will be, will be. I can’t change anything so I refuse to get wound up about things I can do nothing about. If a thought begins to nag at me and it feels unhelpful, it’s mentally consigned to a small box tucked somewhere in my mind. Initially, this was a conscious process done through visualisation. Now it’s automatic. It means that I’m generally free from the second-guessing, the scanxieties, the general panic that precedes results and I take whatever I’m told calmly. It might be a form of dissociation but who cares, if it helps? At first I thought I was Playing Ostrich (another helpful strategy) but I know I’m not because I’m proactive in my treatment and assertive about what I can and cannot manage. I’m not pretending it’s not happening - I deal with it every moment of every day - but sometimes I feel like the emotional toll is just too big for me to take on, it almost feels unreal. One day, it will hit me hard but, for now, I’m fine with it. 

I plug into Progressive Hypnosis’s videos (freely available on YouTube) on an almost daily basis so I achieve a meditative state (or extra sleep) which I am certain has helped me manage emotionally. I also refuse to accept that we must all adopt a positive mindset. I feel passionately about the way it’s often presented as a necessity by well-intentioned but ignorant friends because, within it, there is failure. People drowning in their emotions feel they are somehow letting the side down. It’s unhelpful. Of course a positive outlook can make this experience more manageable but there are times when people need to allow their emotions to break through. It’s normal. It’s natural and it’s not a sign of weakness. Yet so many apologise for feeling down, for needing to reach out for support, when it should feel like the most natural thing in the world. The important thing is to believe that tomorrow or the next day may be different.

Lastly, I’d say trust is invaluable. By all means analyse all your scan results if that makes you feel better, but accept that your team comprises experts in their field with far greater experience and insight than you may have. Trust their judgement and you will find you have an easier ride. Dr Google does not make us experts. Having said that, we know our bodies. We should be aware of changes that don’t improve over a couple of weeks and we should take them to our team, not be overawed or reluctant to cause a fuss. After all, who would expect breast cancer in their eye socket? Come on!!

Life is still for living, maybe living more intensely if you have the energy. I don’t. It’s not so carefree, sometimes it’s downright scary or unpleasant, but there is still life to be savoured, people to be loved and cared for, experiences to be had that provide that essential break from feeling like a cancer patient.

How long have you been living with secondary breast cancer?

2.5 years

What is the emotional impact of this disease for you and your family?

Living with uncertainty and anxiety is the most difficult emotional impact both for me and my family.  

Planning further than 3 months ahead, when I have my scheduled CT scans, is difficult. That makes it hard to put cancer out of our minds for any length of time.  

I have a husband and teenage son and they are so supportive of me and of each other. We are a strong family unit together, but it has also been important for each of us to build our own support networks so that we have the type of help and community that we need for now and the future. 

Day to day we make life as normal as possible - work, friends and family life all play a big part. 

Do you have any coping techniques or advice you’d like to share?

I have learned to cope by  moving forward in whatever way I can - I spend time being  creative and learning new skills. It helps to remind me that there can still be new horizons and experiences, even with all the emotional challenges that a stage 4 diagnosis brings.