The Emotional Impact of Secondary Breast Cancer - Community Stories

Living with secondary (metastatic) cancer is challenging. You will deal with a variety of emotions, such as 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 what the ‘emotional impact of secondary breast cancer’ has been for them. 

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?

Christine Thornley

How long have you lived with secondary breast cancer?

I was diagnosed with secondaries in October 2015 with a confirmation scan taking place in early 2016.

My primary dx was in 1998 when I had a lumpectomy. It recurred three times between then and 2015 - mastectomy and two excisions in 2004,2008 and 2015 all appearing in the same area as the original. After the last excision there was some cancer still present and currently this is damaging two of my ribs the other mets are in my lungs and spine.

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

I have spoken to my family ( in particular my daughter who lives with her family here with me ) and we agree that the length of time I have had this disease has caused us all to 'get used to it'. My three grandchildren aged 25, 20 and 18 have never known me in a pre-cancerous life. Certainly it has an impact in lots of practical ways for all of us but as I said emotionally we are accustomed to it. Also between 2013 -2020 we as a family were dealing with my husband with dementia and I guess the cancer took a back seat for a while. Breast cancer, secondary or otherwise is not a fun run but dementia is the absolute pits.

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

As for any advice one thing I would say is don't google. Information particularly stats is very often out of date and not always correct. I have always tried to have a positive outlook as I think this is important but I understand that for many sbc sufferers this is very difficult. Trying to live as normal a life as possible which I have tried to do can also be almost impossible.

My heart breaks for the young women especially ones with babies and little ones on M2C and the best advice is to take all the help that is on offer to you. New treatments keep appearing and as long as they do there is always hope.

Stay close to those who love you and treat yourself at every possible opportunity to whatever makes you happy.  25 years is a long time and although I have spent much of it in hospitals for appts and chemo etc I suppose if you can be lucky with cancer then I have been.

Linda Ellis

How long have you lived with secondary breast cancer?

31 months since diagnosis

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

It's like having a weight strapped to your chest all the time, some days you feel strong and can carry the weight around without too many problems but other days it weighs you down so much you can't get out of bed. It's not just a physical thing but it's mentally very draining. 

It's difficult getting the balance right between trying to act normal and accepting help when you need to, trying to live for today and plan for a future when you won't be there for your family. 

I've always been open with my friend and family about my diagnosis. 

I do struggle, I get very frustrated that I don't have the energy or the physical capability to do what I used to.  

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

Do what you enjoy, for me that is enjoying normal stuff, coffee with a friend, lunch out or a visit to a museum with family, enjoying nature - getting out into the countryside for a walk or doing a bit of gardening. I struggle most in the winter when it gets dark early and the weather is gloomy and so I try and make sure I book things in my diary that make me go out a couple of times a week, things like going to our local weekly craft group, to our cancer support group tea & chat meetings. 

I have been having counselling at our local hospice and that has helped.  

We bought a motorhome just before I was diagnosed and I'm so glad we did, it means we can go away for short breaks as well as doing longer trips and can fit it around hospital visits for treatment and scans. I find it very relaxing, home from home but with the opportunity to explore new places and to rest up when I need to. 

I'm also glad I took time early on to sort out my will and to register power of attorney as now I don't have to worry about that. 

Patricia Snow

How long have you lived with secondary breast cancer?

I have been living with Secondary Breast Cancer for 5 years and 4 months . 

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

The emotional impact on myself and my family is profound . It is a complete roller coaster of emotions. One minute you are ok the next down in the depths. Not to mention the regular meltdowns. The knowledge that things could take a turn for the worse is always there . And the grief for the life you could have had can be all consuming. My family always try to protect and support me but the realisation that their time with their wife, mum , granny , sister will be cut short is devastating and can taint everything. 

To help cope I try to have wee trips or outings planned . Can just be simple things like coffee with friends or a walk on the beach . These give me a real boost . I also like to spend as much time with my family as possible. 

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

In terms of advice , I would say try to live one day at a time and don’t look to the future , it’s too upsetting. I would also try to live in the now (not always possible) and be grateful for every day . 

We look forward to sharing more community stories on the 'Emotional Impact of Secondary Breast Cancer' in the weeks to follow.