BONE PROBLEMS

This page is part of the PanCare PLAIN summaries about late effects and recommendations for long-term follow-up care for survivors of childhood, adolescent, and young adult cancer. Click here, for more information on the PLAIN summaries.

Bone problems

All the bones in our body make up our skeleton. We need our bones to stay upright, help us move and to protect our organs. Each bone has a hard, calcified layer of bone on the outside. Underneath this hard layer is a softer, spongy bone.

Inside the bone are bone cells (osteoblasts), which are responsible for keeping the bone healthy. They do this by constantly removing old layers of bone and producing new bone to take its place. For this process, bone cells need oxygen and nutrients from the bloodstream.

Sometimes problems can occur with the bones which makes them easier to break. Bone problems include:

  • Low bone mineral density, where the bone cells have too little minerals and, therefore, become weak and break more easily. This can also lead to osteoporosis where the bone cells make too little new, healthy bone to replace the old bone.
  • Osteonecrosis (avascular necrosis), where bone cells do not get enough blood and die. Osteonecrosis can happen in any bone, but is most common in the thigh bone and upper arm bone.

Bone problems are very rare, especially in young people. There are a number of things anyone can do to lower your risk of bone problems, such as having enough exercise and taking enough calcium and vitamin D. Often, people get enough calcium and vitamin D from their diet, but in some cases taking supplements can be helpful.

Am I at higher risk of bone problems?

Anyone, including people who have never had cancer treatment, may develop bone problems. However, there are some medical conditions and treatments that may increase the risk of having bone problems. The problems that can occur depend on the type of cancer treatment received.

The following medical conditions can increase the risk of low mineral bone density:

  • Hypogonadism, where the testes or ovaries produce too little sex hormones
  • Growth hormone deficiency, where the pituitary gland in the brain produces too little growth hormone

The following treatments can increase the risk of low mineral bone density:

  • Treatment with corticosteroids
  • Radiotherapy to the brain or spinal cord or an area including the brain or spinal cord
  • Radiotherapy to the entire body, also known as total body irradiation (TBI)

You are at higher risk of developing low bone mineral density if you are underweight or if you (have) smoke(d). Your risk is also higher if you are a male or if you are of white ethnicity.

The following treatments can increase the risk of osteonecrosis:

You can find out if you had any of these medical conditions or treatments by looking at your treatment summary. If you do not have a treatment summary or if you have any questions, do contact your treating hospital.

If you experience bone problems, it does not always mean that they are caused by your cancer treatment. Bone problems may have other causes, such as lack of calcium or vitamin D or little exercise.

What are the symptoms and signs of bone problems?

There are symptoms and signs that can tell you if you might have bone problems. You might not have these symptoms and signs at the moment, but it is important to be aware of them in case they may develop in the future.

Symptoms and signs of low bone density or osteoporosis (and its complications) are:

  • Breaking bones easily
  • Sudden, severe back Pain or chronic back pain
  • Loss of height (due to breaking vertebrae)

Symptoms and signs of osteonecrosis are:

  • pain in a joint, especially during exercise, but sometimes also when resting
  • Joint stiffness
  • Reduced range of motion

If you recognise any of these symptoms or signs in yourself, please contact your general practitioner or follow-up care specialist. These symptoms and signs are often caused by something else.

I am at higher risk of bone problems. What tests should I have and when?

If you received radiotherapy to the brain or spinal cord or to the entire body and, therefore, are at higher risk of low bone mineral density, it is advised to:

  • Have a DXA scan (bone density scan) once at entry into long-term follow-up (LTFU) and/or once at 25 years of age and more often if needed. For children and adolescents, it is advised to have a DXA scan of the lumbar spine and of the total body (without head). For adolescents and adults it is advised to have a DXA scan of the lumbar spine and the hip.

If you received corticosteroids and, therefore, are at higher risk of low bone mineral density, you and your follow-up care specialist will discuss and jointly decide what the preferred follow-up care for you is (this is called shared-decision making).

Testing for low bone mineral density has its advantages and disadvantages, for example:

Testing for low bone mineral density 
Advantages Disadvantages
  • You may feel reassured if you have normal bone mineral density at this time.  
  • Having bone mineral density screening may help to identify the disease in an early stage. This would allow doctors to monitor the bone mineral density course over time.
  • You may be more likely to have weak bones detected at an earlier time point when certain interventions may be most effective (before the end of puberty), and as a result, bone fractures may be prevented. 
  • You may experience anxiety and stress about having bone mineral density screening and what the test results will show.  
  • You may feel more like a patient rather than a healthy survivor if you decide to have bone mineral density screening.
  • You may be incorrectly diagnosed with weak bones (misdiagnosis), or diagnosed with weak bones that never would have caused fractures (overdiagnosis), although your doctor carefully considers treatment.
  • We do not know if early treatment of weak bones leads to better health in survivors. 
  • The diagnosis of weak bones may affect your ability to obtain healthcare and/or life insurance. 

If you are at higher risk of osteonecrosis, it is advised to:

  • Discuss your medical history and whether you experience(d) any symptoms and signs of osteonecrosis with your general practitioner or follow-up care specialist at least every 5 years.

What happens if I have bone problems?

If you have bone problems, your general practitioner or follow-up care specialist will probably refer you to a specialist. Depending on the symptoms and/or signs you experience, you may be referred to an:

  • Endocrinologist (physician specialised in hormones and metabolism)
  • Rheumatologist (physician specialised in autoimmune and inflammatory diseases that affect the muscles and joints)
  • Orthopaedic surgeon (surgeon specialised in bones and joints)

The specialist may discuss different treatment options with you.

What else can I do?

Knowing that you may be at increased risk of bone problems can be difficult. Talking to friends and family can be helpful as well as specialist counselling and/or contact with support groups, such as patient organisations. For more information on taking care of your mental health, please read: Mental health problems.

To lower your risk of bone problems, it is very important to live a healthy lifestyle. In particular, it is important to exercise to strengthen your bones. It is advised to do exercises (such as cycling, tennis or doing housework) for at least 150 minutes a week. Additionally, perform bone strengthening activities (such as lifting weights, running or exercising with resistance bands) twice a week. Taking care of your mental health may be beneficial; even small changes to your lifestyle can have a positive impact on both your physical and mental health. For more information on taking up a healthier lifestyle, please read: Health promotion.

The nutrients calcium and vitamin D are especially important to keep your bones strong. It is advised to consume at least 10 micrograms (µg) of vitamin D per day and at least 500 milligrams (mg) of calcium per day. Calcium rich foods include dairy products, nuts, kale and bread. Fatty fish, margarine, halvarine and mushrooms are great sources of vitamin D. The body also produces its own vitamin D when exposed to sunlight. However, be aware that too much sun exposure can be harmful. If you cannot get enough of these nutrients through your diet, it might be necessary to take supplements with calcium and vitamin D.

If you have a low BMI or if you are underweight, it is important to consider taking nutritional supplements to support your bone health.

It is also important to consider fall prevention. This can involve making sure that your home is safe and has no fall hazards, having your vision regularly checked on and wearing appropriate footwear.

It is important that you are aware of the possibility of developing bone problems and that you know the symptoms and signs. If you have any further questions or if the information in this brochure concerns you, please contact your general practitioner or follow-up care specialist.

Where can I find more information?

You may find more information about bone problems online. However, it is important to be aware that this information is not always up to date or accurate.

On this website, you can also find more information related to this topic:

Please note

This PLAIN summary is based on the PanCareFollowUp guideline about “Bone problems” [1], which is based on the consensus of different national guidelines, and the IGHG* guideline for “Bone mineral density” [2].

While the PanCare PLAIN information group strives to provide accurate and complete information that is up-to-date as of the date of publication, you can check with your general practitioner or follow-up care specialist if this summary reflects the most up-to-date information available and whether it is relevant for you.

Please do not rely solely on this information. It is best to also seek the advice of a qualified medical practitioner if you have questions regarding a specific medical condition, disease, diagnosis or symptom.

No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information. PanCare has produced the English version and PanCare is not responsible for the translated versions of this summary.

The PanCare materials are free to use for anyone aiming to inform about late effects and long-term survivorship care. However, no financial advantage may be achieved. All communication should reference PanCare and link to the PanCare website.

*International Guideline Harmonization Group for Late Effects of Childhood Cancer

[1] van Kalsbeek, R. et al. (2021) European PANCAREFOLLOWUP recommendations for surveillance of late effects of childhood, adolescent, and Young Adult Cancer, European journal of cancer. Available at: https://www.ejcancer.com/article/S0959-8049(21)00368-3/fulltext

[2] Van Atteveld, J.E. et al. (2021) Bone mineral density surveillance for childhood, adolescent, and young adult cancer survivors: evidence-based recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Available at: https://www.thelancet.com/journals/landia/article/PIIS2213-8587(21)00173-X/fulltext