Everything aches

Hello Aunty Social,

Thanks for getting in touch and a warm welcome to the Online Community. I’m Heidi one of the Cancer Information Nurses here on the Macmillan Support Line.

I can see you have joined our breast cancer forum and I hope that you are finding it supportive.

I am glad to hear that the lumpectomy removed all of the tumour and that the cancer hadn’t spread which must have been very reassuring for you.  

As you mentioned one of the side effects of letrozole is aching or pain in the joints or muscles and I am sorry to hear that you are experiencing aches all over your body.

Sometimes symptoms improve with time but for others they can be more severe and longer lasting.

Letrozole reduces the amount of the hormone called oestrogen in the body and can be used in oestrogen or ER-positive breast cancers. This is to stop breast cancer cells from growing when someone has been through the menopause.

A small amount of oestrogen is still produced in the fatty tissues, muscle, and skin after the menopause. This happens using a type of protein (an enzyme) called aromatase. Letrozole works by blocking this enzyme to reduce the amount of oestrogen in the body. It is a type of drug called an aromatase inhibitor.

Sometimes symptoms can be relieved with mild pain relief like paracetamol or an anti-inflammatory drug such as ibuprofen. Before using anti-inflammatory pain relief, ask your doctor about the correct dose, how long you should use it for and any possible side effects, especially if you have a stomach ulcer or asthma.

If the pain is severe, it may be helpful to see a pain management specialist at a pain clinic. You might want to keep a symptom or pain diary to help your specialist team work out the best way of managing your symptoms.

Some people benefit from switching to a different hormone therapy if the pain is difficult to cope with.  Your doctor may suggest changing the type of aromatase inhibitor you take. If that does not work, they may suggest you take tamoxifen instead. Tamoxifen causes fewer problems with joint pain.

Small studies suggest that for women with lower levels of vitamin D, taking vitamin D3 supplements may improve symptoms. Talk to your doctor before taking a supplement to make sure it is safe for you.

Research is going on to discover if a drug called glucosamine may help some women with joint pain from aromatase inhibitors. Glucosamine is often used to treat arthritis. You can buy it over the counter in shops and pharmacies, but it is not suitable for everyone. For example, it is not suitable for women with diabetes, because it may change your blood sugar levels. Please do talk to your GP or specialist team before taking this drug.

Your doctor can refer you to a physiotherapist, they may be able to suggest exercises that are beneficial.  Doing regular exercise to strengthen the muscles around your joints can help to keep them flexible and reduce pain. Non-weight-bearing exercises, such as swimming and cycling may feel more comfortable than other types of exercise. Exercises that gently stretch your joints or strengthens your muscles such as yoga and pilates can also help to improve symptoms.  

Acupuncture may help to reduce pain from joint symptoms for some women. Some hospitals and primary care practices offer acupuncture on the NHS. The needles should not be used on the arm of the affected side.

Complementary therapies such as massage may be helpful for some women. Some hospitals offer massage on the NHS. It is very important to talk to your doctor or specialist nurse before starting complementary therapies. They can talk to you about any possible harmful impacts they could have on your cancer treatment, and about any possible side effects.

The key thing is that if you experience any unwanted side-effect or symptom as a result of treatment then you must make your team aware, they will always be best placed to assess and manage these symptoms.

 If you have any new, worsening, or ongoing symptoms we would always recommend you contact your specialist team, your GP or NHS 111.  

Coping with side effects of treatment can be tough and it is important to think about your own wellbeing, to put you first sometimes. Breast Cancer Now has a course called Moving Forward which is designed specifically for woman that have completed their initial treatment, but may still be coping with the longer term effects of on-going treatment and the emotional impact of their diagnosis.

Penny Brohn UK has some gentle resources for self-care and living well through treatment for cancer that you might find really helpful.   

Dealing with cancer can be an emotional time and you might find it helpful to read our web pages about getting emotional support. You can also check our webpage to find details of support and information organisations in your area.

I hope the information is useful, sometimes talking things through can help so please don’t hesitate to call the nursing team on 0808 808 0000 – we are here every day from 8am to 8pm.

Best wishes and take care,

Heidi

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

Ref/LA/HC