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?
SBC is in my life everyday, from the aches and pains to the fatigue. I have a lively 6 year old and a puppy who are sometimes tricky to keep up with (although I think that would be the case if I didn’t have SBC!) I have good days and bad, some days I can’t get out of bed but others I am up and about and doing everything I possibly can. Mostly I just try and make the most of life, it’s hard sometimes but it’s just about adjusting your mindset (and that of the people around you!) so that you know it’s just one of those things. There’s no use trying to fight the difficult days.
What advice would you give to someone newly diagnosed?
Being newly diagnosed is a terrifying place to be but it does get easier. Whether it’s just that you get used to things or you manage them better I don’t know. I have found surrounding myself with peer support from groups like make 2nds count has really helped. Nobody truly knows what you’re going through better than those who are going through it themselves! One other thing I would recommend is not to be too scared to be your own advocate. Push for other options, push for further tests, keep your team on their toes and make sure you have access to everything that you are entitled to. Also don’t be scared of the word palliative, I was and it stopped me from being able to access some care that I really needed because I didn’t know it existed!
Has your treatment line changed since you completed SBC & Me last year?
Yes it has, I am now on Kadcyla, Zometa, zoladex and a slew of pain meds
How many changes to treatment have you had?
1 since I was diagnosed with SBC
How are you coping?
I had a rough patch earlier this year when progression led to a 3.5 week stay in my local hospital. But I am getting stronger with each day. I am even getting married and moving house soon so normal life has resumed!
Do the side effects affect your life daily? If yes, please explain
Yes, I struggle with pain a lot, I have mets to my femur and my spine and between them they can cause havoc. Letrozole also has a lot to answer for but my oncologist has just stopped them as there is some evidence to suggest that kadcyla makes the side effects worse. Some days I feel like I’m walking on broken feet and ankles as the pain is so bad. I have a great palliative community team who help me with my side effects and a small treatment break has just helped my body to find its equilibrium again.
Have you found a routine that works for your everyday life? If yes, please explain
Mostly I just have to use mind over matter. Some days I just have no choice but to push through but other days I do have to give in and have a nanna nap. I think the most important thing is to be kind to yourself and don’t be afraid to ask for help.
Do you feel anything is missed when it comes to living with secondary breast cancer? Medically or Socially
I was a full year into my diagnosis before I had access to anything “palliative” and I wish I had access to it beforehand.
From a social perspective it would be nice if there was more information and knowledge out there about SBC. I think even women who have had primary breast cancer don’t really know enough about it. I remember when I was diagnosed with my primary I was given a folder with lots of leaflets in but with secondary it was just like oh yeah you have mets off you go. I also struggle with other health professionals who also don’t seem to understand what a stage 4 diagnosis means and ask things like when will you finish treatment? If doctors and nurses don’t understand metastatic disease then what hope do laypeople have? Ultimately at least 1/3 of women go on to develop secondaries and more information and research needs to be out there.
Have you treated yourself to anything since your diagnosis? If yes, please explain
Not yet but next year I plan to take my daughter to Disney World. We have also just sold our house and bought a bungalow as stairs aren’t my friend anymore. The bungalow has a massive garden so I am looking forward to getting green fingers.
Has it changed your perspective on life? If yes, please explain
Massively so. Life is too short to sweat the small stuff. I have changed massively since my diagnosis, I am generally a lot more chilled about things. What really gets me annoyed though is when I see others wasting their lives or complaining about trivial things. They really don’t know how good they’ve got it.
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