Normal fatigue?

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Hi. I had WLE and axilla clearance in Jan 2024 - cancer was in 3 lymph nodes, of which one was at level 3.
6 x ECT chemo, finished July 24. I admit I did no physical exercise at all, due to a significant bereavement and very low mood. I also ended up losing all strength in my legs - struggled to walk, couldn’t get up without help, that sort of thing.
21x radiotherapy in September 24.
Started letrazole in Jan this year.
Went back to work in February, job involved a degree of physical work inasmuch as it is a very busy retail environment, I’m part time.

So my question is - how much fatigue is normal?! After a 8 days of work, where I’ve done 5 8-hour shifts (not consecutive), I am exhausted. This is my 3rd day off, and I still feel utterly shattered. I know not sleeping well doesn’t help, but my body feels devoid of energy.

I also seem to have a scrambled brain - like I cannot cope with too much going on, get overwhelmed easily, which is not at all ‘ normal’ for me!

Is this all expected even this long after finishing treatment?
Like many of us, I’m worried it’s a sign of cancer returning somewhere (I experienced fatigue before my diagnosis).

I know we are all different, but I guess I’m wondering whether I just need to get on with it, or what, really! Thanks for reading such a ramble.

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Hi noots
I can’t help you but I can sympathize. Your description almost mirrors my feelings. I am retired which gives me more time but I am so weary I cannot get enthused to do much. I really hope you can get some helpful advice and regain your stamina.
Be kind to yourself.

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Hi @noots your level of fatigue is not normal for you and that’s all that matters. I would imagine it is a combination of all of the active treatment which your body works hard to recover from, thereby depleting energy levels quickly, plus the Letrozole, which I also take and still have patches of fatigue two and a half years in. On top of that, and this is something I know a lot about, grieving after a major bereavement whilst dealing with the physical and emotional impact of a cancer diagnosis is almost too much for a body to bear. I had stopped work before everything hit me like a ton of bricks so how you are combining it with multiple shifts of busy, physical work is almost beyond me. If you can get to a Maggie’s Centre or a MacMillan centre, both offer advice and support for handling fatigue including exercise classes, relaxation classes, complimentary therapies and support groups all focused on fatigue. You should also speak to your GP about it all, if you haven’t already. You may be given something to help you sleep which is a start but fatigue goes beyond sleep so perhaps a short course of antidepressants may help? I refused them myself as I am retired but would have considered them if I still had to earn a wage. The fatigue will pass in time but it is undoubtedly a challenge whilst it is ongoing. .

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Thank you! I take anti-depressants, I might consider increasing the dose.
There isn’t a Maggie’s really convenient, and I’ve been fortunate enough to benefit from some therapies from MacMillan already.
I suspect I do too much, or not enough… !

I appreciate the “not normal for you” comment. It’s made me reflect somewhat… I think my fear is what ‘work will think’, which stems from long-past experiences with very different managers. And yes, the impact of bereavement is often underestimated…

Thanks.

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Thank you, I wish I could pack in work - but as well as the ££, I need the social aspect!
Being kind to ourselves is so important, isn’t it.
Xxx

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Did you have a phased return to work? Regardless of how many hours your total is, you still need time to adjust back into it. You have been out of the routine for over a year, thats a long time. Your body and mind have both been through the mill in between.
IME, I went back to work in October, used my holiday accrued for a phased return, and got to full time hours in January. Its end of May, and I don’t quite have the energy I started with, and being back full time is a hard slog. I don’t expect I ever will thanks to menopause, but a lot of symptoms I put down to radiotherapy- I can do that, as didn’t need chemo luckily. I had 19 fractions, so nearly as much as you, and been surprised by how much it can have a long lasting effect on sapping energy levels. That’s despite trying hard to keep up with exercise.
Maybe see if you can space your work days out more, or have some added rest time in your day, your employer should make reasonable adjustments for you under the disability at work act. You should have some protected rights.

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Thank you for sharing.
I am fortunate to have amazingly good and supportive managers, in a company that is very aware of health issues including menopause (which they extend to include hormone issues akin to menopause, howsoever caused!).
I have had a phased return, choosing when to work.
The last week has taught me that I am nowhere near ‘back to normal’! I shall think about what I can do, etc, and will speak to managers next time I’m in - they are still completely supportive and there is scope for flexibility in my shifts at the moment.
However, I just don’t know if it’s “normal” - whatever that is - to be so fatigued still.

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Hello noots,

Thanks for your post. It sounds like a very difficult time for you and it’s understandable to ask if it’s normal to feel fatigued following your breast cancer treatment.

Nearly everyone who has been treated for cancer worries about it coming back (recurrence) and you’re not alone in being anxious about this. The uncertainty and fear of breast cancer returning is very real. At first, every ache or pain may frighten you, but most people find the anxiety lessens as the time goes on.

Many people are surprised at how emotional they feel when their treatment finishes. Adapting to life after treatment can be difficult and often the need for information and support continues.

Some people may benefit from talking therapy, such as counselling, to explore ways of managing these worries and concerns. You can speak to your treatment team or GP about this. Some people find mindfulness can also be helpful.

Experiencing fatigue (extreme tiredness) after receiving treatment for breast cancer is very common. It doesn’t always go away with rest or sleep and may affect you physically and emotionally. We hear from many people taking hormone therapy, such as letrozole, that one of the side effects is extreme tiredness. Many people find that they start to get their energy levels back as time passes after treatment, but for some fatigue can continue for months or sometimes years.

Other factors may also contribute to fatigue, such as: the emotional impact of a breast cancer diagnosis, as @Tigress says; altered sleep patterns; reduced activity and poor diet.

It’s unsurprising that you feel your brain ‘is scrambled.’

There are things you can try to help manage fatigue as discussed in the previous links. You may want to keep a diary to record when you feel most tired. This can help you plan activities you enjoy in the times when you have more energy. Trying to stay physically active can help. Eating a healthy well balanced diet is also important. The following tips for better sleep may also be helpful.

You may find this Facebook Live session with Dr Mike Scanlan, Sleep Expert, offers some useful ways to manage insomnia as this is a problem for you.

If you have not done so already, do discuss how you are feeling with your treatment team, breast care nurse or GP. It’s important they are aware of any side effects you are experiencing and how they are affecting your daily life. There are a few situations where fatigue can be due to other conditions such as anaemia, (too few red blood cells in the body) or thyroid problems, so it’s important these are ruled out.

You may be interested in our resources that are particularly for those who have come to the end of their hospital-based treatment. These are known as our Moving forward services and include our Moving Forward book and Moving Forward courses.

You may also be interested in getting support with Life after cancer.

Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

Macmillan Cancer Support produce a range of information to help support people returning to work. As @entropy says, as you now come under the Equality Act, your work place are obliged to make reasonable adjustments. Do contact your line manager or human resource manager to discuss your concerns.

We offer a range of other free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.

You’re welcome to call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

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Best wishes

Addie

Breast Care Nurse

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