Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
How does secondary breast cancer affect your life?
It’s always there lurking in the background! You can’t completely forget about it! I have more days now though when I don’t even think about it. I’m not as obsessed about ‘my cancer’ as I was a year ago when everything seemed to revolve around me and my cancer. The relentless health appointments and medications and side effects can be hard going and exhausting.
But I appreciate things more now. I look for beauty and positivity in everything around me. But some days are harder to do that than others.
It also massively affects those who love me and that I find harder to deal with.
What advice would you give to someone newly diagnosed?
Allow yourself time to process your diagnosis and feel all the feels that comes with it.
Reach out to friends and loved ones for physical and mental support. Don’t be afraid to ask for help. Loved ones want to do things to help you. Accept their help.
Ask questions - keep a notebook and take it with you to your appointments.
Don’t use google for information use specific websites like Cancer Now or Macmillan etc
Don’t put too much pressure on yourself to be ‘strong’ to always be coping and to be dealing with everything positively all of the time. It’s not realistic and not healthy. But don’t wallow and give up either.
Reach out for support and information from groups/ online etc the benefits of chatting and meeting with others with shared experiences is immeasurable.
Think of secondary breast cancer as living with a chronic condition not a death sentence.
Has your treatment line changed since you completed SBC & Me last year?
No I’m still on phesgo, denosumab, zoladex and letrozole. My phesgo injections are on hold though due to issues with my heart caused by treatment. Waiting for cardiology to see me and come up with a plan. It’s scary not being able to take the medication that stops the cancer growing.
How many changes to treatment have you had?
Still on my first line of treatment.
How are you coping?
Pretty well. I have less wobbles than I used to. It’s been 18 months since my de novo diagnosis and most days I’m busy living life.
I get frustrated and upset when I can’t do things physically because of side effects of medication but I am learning to handle these moments better. I’m a fairly resilient and positive person anyway which I think helps. I have great friends and family so get a lot of support. The thing that I still really struggle with is the impact my diagnosis has had on my children, family and friends I am in the process of seeking professional help with this as I feel I’m ready to work through some of these difficult emotions.
Do the side effects affect your life daily? If yes, please explain
Yes! I have more issues with side effects than the actual cancer! Everything now needs planning in advance! My mobility is greatly reduced and my breathing is affected.
I now have an under active thyroid due to radiation treatments.
I have heart issues ( damage) due to the phesgo treatment
My bowels have never recovered after chemo
I suffer with fatigue
I have a lot of bone pain with the medication and treatments that I am on.
And don’t get me started on the menopause symptoms! As a woman I was completely naive and unprepared for how significantly the menopause can affect you.
Have you found a routine that works for your everyday life? If yes, please explain
For me keeping busy and being as independent as possible is best for me. I’m a busy mum and I still work full time for the NHS which is hard but I love my job and I’m not ready to have to give it up yet.
Getting fresh air and movement is part of my daily routine as it makes me feel better physically and mentally.
Checking in regularly with friends and family really helps too.
Every night, snuggles in bed with my spaniel Luna is ESSENTIAL!
Do you feel anything is missed when it comes to living with secondary breast cancer? Medically or Socially
It can be easy to forget who you are sometimes when the world of ‘cancer’ is overwhelming. Yourself and those around you need to remember there is more to you than your cancer diagnosis. For me personally I feel that support and information for those living with secondary breast cancer is still lacking from the health professionals. In my county we do not have secondary breast cancer specialist nurses. We do not have a Maggies Centre. My oncologist is not based in my county so I feel resources and services are lacking for women with a secondary breast cancer diagnosis. Having a key worker or someone to signpost you to all the relevant people/services or who liaise everything would be so helpful.
Have you treated yourself to anything since your diagnosis? If yes, please explain
No not really, I’ve always treated myself if I’ve wanted to regardless of my diagnosis.
Has it changed your perspective on life? If yes, please explain
Yes! I don’t sweat the small stuff. I’m less tolerant of peoples bullshit. I look for the positives where I can and I try not to waste my time with negativity. Interactions and time spent engaging with those who are important to us are more meaningful to me than things.
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