Coping with long-term side effects of treatment

As more New Zealanders survive breast cancer thanks to advances in screening and treatment, there’s a greater chance they’ll experience long-term side effects of breast cancer treatment. This is currently an under-researched field and we would like to know more about the long-term and late side effects of treatment that affect the lives of New Zealanders.

Thank you to those who completed our online survey in 2023 to help us better understand the experiences of Kiwi breast cancer survivors. 

The responses to this survey continues to help us to inform inform doctors, the Government and our own support services to make sure more Kiwis live well after breast cancer.

These responses were captured in our webinar: Long-term effects of treatment, where our expert panel discuss the most common side effects, providing information on the best ways to manage them.

Talk to your doctor about your risks of developing treatment side effects. Your risk will depend on your individual treatment plan and your overall health. If you’ve had treatment that is known to cause long-term or late side effects, you may be advised to have certain physical examinations such as scans or blood tests.

After a lumpectomy to treat breast cancer, the breast may be scarred and may have a different shape or size than before surgery. After a mastectomy there is a long scar and an area of numbness across the chest, and sometimes the area around where you had surgery can become hard.

If lymph nodes were removed as part of the surgery or affected during treatment, lymphoedema may occur, and this can happen many years after treatment.

In some cases, nerve pain may persist into the longer term and require assessment and management by a specialist pain team.

Radiation therapy causes changes to the skin and underlying tissues so the breast may feel firmer and be slightly smaller after treatment. Small “spider-veins” may be visible on the skin.

Radiation pneumonitis

Some patients experience breathlessness, a dry cough, and/or chest pain two to three months after finishing radiation therapy. This is because the treatment can cause some inflammation and scarring of the lung, called radiation pneumonitis. These symptoms may seem similar to the symptoms of pneumonia but do not go away with antibiotics. They can be treated with steroids, and most patients fully recover with treatment. Talk with your doctor if you develop any new symptoms after radiation therapy or if the side effects are not going away.

Heart problems

People having left breast radiation therapy are at an increased risk of heart problems over time. This risk can now be reduced using measured breath holding, which shifts most of the heart out of the radiation field.

Brachial plexopathy

This is a rare side effect caused by damage to the brachial plexus, the bundle of nerves which arises from the spinal cord and branches into each arm. Symptoms include burning, tingling or numbness in the shoulder, arm or hand. Talk to your doctor if you’re experiencing these symptoms. Treatment ranges from physiotherapy and pain management to surgical repair.

Hormone therapy for early breast cancer affects people differently. Some people experience more side effects than others and it’s not something you can predict before treatment. Many women find that the side effects are often worse at the start of treatment, and can settle down after weeks or months, but some symptoms persist for the duration of treatment.

Hormones occur naturally in the body and control the growth and activity of cells. We know that the female hormones, oestrogen and progesterone, can help some types of breast cancer to grow. Hormone therapy works by reducing the amount of oestrogen in the body or blocking its effects. You can have side effects from hormone therapies because they lower your levels of oestrogen or stop your body from being able to use it.

The side effects you experience will depend on the type of hormone treatment you are on.

Take hormone (endocrine) therapies as prescribed:

If you have been prescribed endocrine therapy it’s very important to take it exactly as prescribed. Research has shown that many women don’t take their medication every day, either because they forget or because of the side effects. Endocrine therapy reduces the chance of breast cancer recurrence and when not taken as prescribed, the drugs are less effective.

Managing side effects:

Hot flushes
Regular exercise has been shown to reduce the frequency and intensity of hot flushes. Take note of anything which might trigger your hot flushes, e.g. hot drinks, alcohol, spicy food, hot temperatures. Wear loose, natural fabrics (especially cotton) and dress in layers. It may be helpful to carry a small portable fan with you. If your hot flushes/night sweats are intolerable, talk to your doctor to see if you might be able to change medications or try some medication to reduce the flushes. It is not advised to take herbal products such as Black Cohosh. These often contain phytoestrogens (plant oestrogens) and the safety of taking these supplements with hormone therapy for breast cancer has not been clearly established.

Vaginal dryness, irritation
Lowered oestrogen levels cause the tissues of the vagina to become thin, dry and less elastic. The vagina becomes slightly shorter and narrower. (These changes also happen with menopause.)

Water-based lubricants such as Sylk can reduce the discomfort, particularly during sex. Vaginal moisturizers such as Replens (available online and from some pharmacies) help to hydrate the vaginal tissue and have a long lasting effect (up to three days at a time).

Vaginal discharge
A small amount of clear or white vaginal discharge is normal for many women but hormone therapy for breast cancer may cause an increase in the discharge volume. Wear loose, cotton underwear and panty liners if needed. Report any odour or discolouration such as blood to your doctor.

Nausea
This is quite common when starting hormonal therapy and often passes as your body learns to tolerate the drug. It may help to take the medication with food or at night before going to bed.

Bone and joint pain
It’s important to stay physically active to keep the muscles around your joints flexible. Regular exercise has been shown to reduce joint pain caused by hormone therapy.

Common mild analgesics such as paracetamol or some anti-inflammatories can also help, so talk to your doctor to see if these medications are appropriate for you. Hot packs may be soothing, yoga may be helpful and some people have gained relief with acupuncture.

Loss of bone density
If you have a strong family history of osteoporosis or a personal history of a fracture after a minor fall, talk to your doctor about having a DEXA scan to measure your bone density. Ensure you have a healthy diet incorporating adequate calcium. You can use this tool to see if you have adequate nutritional calcium intake.

Weight bearing exercise and resistance training also help maintain bone density.

You can estimate your risk factors for osteoporosis using this PDF.

Rare side effects

Deep vein thrombosis, pulmonary embolus and endometrial cancer are rare side effects of Tamoxifen. It’s important to urgently report any calf pain and swelling, shortness of breath or abnormal vaginal bleeding to your doctor.

Patients who received Herceptin or chemotherapy drugs called anthracyclines may be at risk of heart problems. These treatments can reduce the heart muscle’s ability to pump efficiently. Talk with your doctor about the best ways to check for heart problems in the future. It’s important to keep blood pressure and cholesterol levels within a healthy range.

Women recovering from chemotherapy might also experience some of the following long-term side effects:

Neuropathy is numbness or weakness caused by damage to nerves as a result of treatment. Usually it begins in the toes, but can affect legs, arms and hands.

The most common symptoms include:

• pain, tingling, burning, weakness, tickling, or numbness in arms, hands, legs and feet 
• sudden, sharp, stabbing, or shock-like pain sensations
• loss of touch sensation
• trouble using hands to pick up objects or fasten clothing.

Many people describe problems with memory and thinking, concentration and multi-tasking following chemotherapy and often while taking endocrine therapy. This is often referred to as chemo brain and may occur for just for a short time after treatment or in some cases, may go on for years. Not much is known about the direct causes of chemo brain so there is no specific treatment.

It may help to:

• Use a daily planner
• Make sure you get adequate sleep
• Exercise both your brain and your body
• Track your problems and you may notice a pattern, enabling you to change your routine to fit
• Don’t try to cope with too many tasks at once
• Ask for help when you need it.

Clinical trials, such as the MAGLEV trial in NZ, have investigated whether magnesium supplementation can help to improve cognitive function in women on endocrine therapy.

If you are experiencing any unpleasant side effects don’t suffer in silence. Talk with your breast care/oncology nurse or doctor about any side effects you may be having. There may be ways to reduce the intensity of your symptoms or there may be alternative medications that suit you better.

Find out more about the side effects of different hormone therapies.