When you finish treatment for early breast cancer there’s an expectation that life will be like it was before your diagnosis. However, many people experience long-term side effects or late effects of treatment, surgery, medication or induced menopause that affects how they live, work and play.
- Long-term side effects start during treatment and continue even when treatment has stopped
- Late effects start after treatment has ended (and can start weeks, months or years later)
If you have long-term side effects after your breast cancer treatment, you are not alone. A recent study acknowledges that, while modern techniques in surgery, radiotherapy and hormone therapy have improved survival rates, persistent long-term side effects from them can disrupt the lives of patients for many years after and impact their quality of life.
Everyone’s experiences are different, and how much you’re impacted by long-term or late side effects can depend on your lifestyle, health and what treatment you had or medication you’re taking. We’ve outlined some of the most common, along with some ways you can deal with them.
If you’ve been experiencing any of these side effects for more than a few weeks, speak to your GP to get an understanding of what’s happening with your health and find out what support is available for you.
1. Sleep
Sleep is one of the cornerstones to your health and wellbeing. As well as supporting healing and recovery, a good night’s rest can mean you’re all set for a new day and have more mental, physical and emotional capacity to do the things that can help manage other side effects.
A sleep routine can help you drop off more easily:
- no screen-time before bed
- have a shower or bath
- spray/diffuse a calming oil
- write down any thoughts or ‘to do’ things that are playing on your mind
- listen to a guided meditation or sleep story (Calm do some free ones)
If you’re experiencing insomnia or finding that lack of sleep is impacting your mental and emotional wellbeing, ability to take care of yourself or others, or do things like driving, then chat to your GP.
2. Fatigue
Fatigue is often described as tiredness that doesn’t go away no matter how much you sleep or rest. It can be chronic and debilitating. You can feel OK one minute, then you’re wiped out the next. It might seem counterintuitive, but movement or exercise can help. You don’t need to be a gym bunny – start off with a walk around the block, or some restorative yoga if you can. An accredited exercise physiologist with experience in oncology or chronic illness can help.
The ‘spoon theory’ is a good way to think about how to manage your energy – you only have a certain amount of ‘spoons’ of energy in a day, how are you going to use them?
Fatigue can be caused by a number of factors and it’s good to check to see if there’s anything underlying it, so see your GP if it persists.
3. ‘Chemo brain’ or ‘chemo fog’
Despite its name, cognitive impairment following a cancer diagnosis can be caused by radiotherapy, having surgery and taking hormone therapy as well as chemotherapy. It’s also thought that the shock and trauma of a diagnosis can cause ‘cancer fog’. Cancer-related cognitive impairment is largely temporary but can be long-term for some people. ‘Brain fog’ is also associated with menopause (whether natural or medically/surgically induced).
‘Fogginess’ can mean you have memory problems, forget words when talking, have difficulty concentrating or learning new things, find it hard to multi-task or easily become confused and overwhelmed. This can be extremely upsetting. Exercising your brain can help using ‘brain training’, as too can physical exercise. You might need to find new ways of doing everyday activities. Try ‘unitasking’ where you focus on doing one thing at once. Look at what technology or apps can support you. If you’re worried about it impacting how you do your job, read our article about having a conversation about cancer at work.
4. Anxiety and depression
You have been through a major life event. Needing help to deal with what’s happened to you is OK. If you are experiencing anxiety or depression, it is important that you speak to your GP. There are many things that can help, but you really need to talk to a health professional and be sure you’re getting all the support you need and deserve as many factors can impact your mental health. You may be eligible for help with costs to see a counsellor through a mental health treatment plan.
Fear of recurrence after you’ve finished treatment is a normal worry. Be informed about your risk of recurrence with evidence-based information from your team (not Dr Google!). Fear of recurrence can be triggered by going for scans, also known as ‘scanxiety’. Read Dr Jodie Fleming’s tips on how to manage scanxiety.
Sharing your thoughts with others who ‘get it’, can help too. Check out Pink Hope’s support groups.
You can also call Lifeline’s free 24/7 crisis support service on 13 11 14.
Acupuncture has also been shown to help some women.
5. Loss of libido/sex drive
In our Instagram Live about menopause after cancer treatment, Sonya Lovell, host of the Dear Menopause podcast, talks about the different things that can impact libido. Yes, it can be associated with menopause, but other factors could be in play that are affecting your adult play such as fatigue, stress, painful sex or concerns about how your body looks and feels after surgery. Watch the IG Live here – 14 minutes in if you want to cut to it!
6. Hot flushes
Hot flushes are a well-known symptom of menopause. What’s little-known is that they can range from feeling a bit hot to having skin-crawling needles and pins to heart-racing palpitations to sweating so much at night you need to change your bedding. Lifestyle changes can help: limit spicy food and alcohol, increase exercise, practice mindful techniques such as meditation. Acupuncture has been shown to help some women.
You might read that over-the-counter supplements or herbs can help. Always check with your doctor before taking supplements to find out if there are any contra-indications with medication you’re taking and your history of cancer. Some medications, like Gabapentin, can be prescribed to reduce hot flushes – speak to your GP.
Read how Sonya manages her hot flushes and other menopause symptoms after her treatment for breast cancer.
This isn’t a list of all side effects. And it isn’t a list of everything you ‘should’ be doing. Start with one thing and go from there. Some of the things that you can do to help one side effect, like exercise, can help with other side effects too – that’s a win-win!
This content is brought to you in partnership with Eli Lilly Australia and developed independently by the team at Pink Hope.
