Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
Date of Diagnosis:
September 2019
Current Treatment Line
Capecitabine
Denosumab
Zoladex
How does secondary breast cancer affect your life?
Fatigue and pain are the main problems with my health. I use a crutch to walk short distances . I need people to help with shopping and taking me to appointments and to push my wheelchair around .My friends dropped steadily away so my social life is pretty grim . I struggle to do household chores and cooking .
What advice would you give to someone newly diagnosed?
There's lots of different treatments available. Many people live a long life after diagnosis. My oncologist told me to look at my diagnosis as living with a long term illness. Don't worry about the future, it's out of our control. Also very importantly accept any help offered. The hospice has a variety of different specialists to help with mental health,namely counselling which can be so helpful at any stage ,also dieticians if you struggle with eating due to treatment side effects,also occupational therapists to help if you suffer from mobility problems also pain management doctors who specialise in cancer pain and are much more qualified than GP to help with this.
Has your treatment line changed since you completed SBC & Me last year?
I started treatment back in 2019 with
Denosumab
Zoladex
Anastrozole
Palbociclib
I had pain issues in my joints so I tried a few changes in hormone therapy tablets and ended on exemestane which had least side effects .
Due to widespread pain in my joints I was referred to the Hospice pain management team.
I had already tried paracetamol, naproxen and codeine based medication up to referral . As the previous medication had little effect on the pain. I was given slow release morphine and oromorph for breakthrough pain. Although initially i was hesitant to take such strong sounding Tablets, I did find they worked wonders and really worked .I didn't find any sleepiness or unwanted side effects ,maybe a little constipation but easily sorted out with a daily fruit and raw vegetable smoothie (I declined the laxative offered)
The treatment kept my cancer stable until July 2022 when I started experiencing new groin ,hip and leg pain. A MRI scan showed significant progression in my lower spine. Fortunately no fractures or spinal compression .
August 2022 oncology changed my treatment to
Capecitabine
Zoladex
Denosumab
How many changes to treatment have you had?
In all so far just the one change
How are you coping?
It's a big struggle . I start with getting downstairs . Once that is done I take small steps to tackle things that need to be done with rest . I have a wall calander to write all appointments down.
Do the side effects affect your life daily? If yes, please explain
My lifestyle has slowed down a lot since my diagnosis . My physical health declined due to extreme joint pain and fatigue ,side effects from the treatment . I have to ask my dad for help getting shopping and taking me to appointments . I otherwise rarely leave the house. Since my cancer progression I have had to change my pain relief to add in pregabalin . I had tried to reduce the morphine myself because of the drowsiness but it made no difference, just increased the pain .Also I tried to reduce the dose of pregabalin again a marked increase in pain which was not tolerated. So I am limited in what activities I can do .I can't just nip out to the shops because I need someone to take me and push my wheelchair. I have noticed since the end of lockdown my friends have disappeared . I don't like calling and suggesting a meet up because it means they have to come and collect me. So I have got no one apart from dad to rely on in the week. I do have only one friend now to socialise with . Pre Covid I had about a dozen local friends .
Have you found a routine that works for your everyday life? If yes, please explain
I don't really have a routine as such. Every day is different . It all depends on how well I feel .
Do you feel anything is missed when it comes to living with secondary breast cancer? Medically or Socially
As I mentioned previously ,my social life has taken a downhill spiral since covid and lockdown . I don't want to be a pity friend. Not many friends are aware of my decline in physical health especially more so since the disease progression confirmed August . I don't want to just call or text to let them know . I looked at free local groups and they all seem to be around exercise or walking , there's a lack of something for cancer patients .
Have you treated yourself to anything since your diagnosis? If yes, please explain
I bought some nice green trousers in the online sale. It was kind of a birthday present as Dad had given me some money . Normally I'd have spent it on household bills but decided I needed a cheer up treat especially as I'd had the news of progression .
Has it changed your perspective on life? If yes, please explain
I appreciate the small things in life
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