Bone problems

Anyone, even people who have never had cancer, can develop bone problems. However, some cancer treatments can increase the risk. It is important that you recognize and understand symptoms and signs that may indicate bone problems.

What are bone problems?

Bones support the body, work together with muscles to enable movement, and protect the organs. Sometimes problems occur that make bones break more easily:

Low bone mineral density: the bone cells contain too few minerals, making them weaker and more likely to break.
Osteoporosis due to low bone mineral density: the body produces too few new bone cells.
Osteonecrosis: bone cells receive insufficient blood supply and die. Osteonecrosis can occur in any bone, but most often affects the thigh bone and the upper arm bone.

Bone problems in young people are rare. You can reduce the risk of bone problems by staying physically active and ensuring adequate intake of calcium and vitamin D. Most people get enough calcium and vitamin D from their diet. Vitamin D is also obtained from sunlight. Sometimes additional supplements are needed.

Who has an increased risk of bone problems?

Anyone, including people who have never had cancer, can develop bone problems. However, some conditions and cancer treatments can increase the risk.

Conditions that can increase the risk of low bone mineral density

Testosterone or estrogen deficiency: the testicles or ovaries produce too few sex hormones
Growth hormone deficiency: the pituitary gland in the brain produces too little growth hormone

Treatments that can increase the risk of low bone mineral density

Treatment with corticosteroids for four weeks or longer
Radiotherapy to the brain or to an area where the brain is located
Total body irradiation (TBI)

The risk of low bone mineral density is higher if you are underweight or if you smoke or have smoked. The risk is also higher if you are male and/or White.

Treatments that can increase the risk of osteonecrosis

Treatment with corticosteroids for four weeks or longer
Allogeneic stem cell transplantation (from a donor) with graft-versus-host disease
High-dose radiotherapy

You can check your treatment summary to see whether you received one or more of these treatments. If you do not have a summary, you can contact the LATER clinic or the hospital where you were treated. Bone problems are not always caused by treatment. Other causes may include calcium or vitamin D deficiency or insufficient physical activity.

What are symptoms and signs of bone problems?

Certain symptoms and signs may indicate bone problems. Even if you do not have these symptoms at the moment, it is important to recognize them in case you develop them in the future.

Symptoms and signs of low bone mineral density or osteoporosis

Bones that break easily
Sudden severe back pain or chronic back pain
Loss of height (due to collapsed or fractured vertebrae)

Symptoms and signs that may indicate osteonecrosis

Pain in a joint, especially during exercise, but sometimes also at rest
Stiff joints
Difficulty bending and stretching

If you recognize one or more of these symptoms or signs, contact your general practitioner or LATER doctor.

I have an increased risk of bone problems. Which tests are needed and when?

During a visit to the LATER clinic, specific attention is paid to bone problems as part of the medical history and physical examination.

If you have an increased risk of low bone mineral density due to radiotherapy, it is recommended to have a DEXA scan at your first visit to the LATER clinic and again at the age of 25 to measure bone density. Additional scans may be needed if necessary.

Children and adolescents: a DEXA scan of the lower spine and the whole body (excluding the head)
Adults: a DEXA scan of the lower spine and the hip

If you have an increased risk of low bone mineral density due to corticosteroids, you and your LATER doctor will decide together which care is most appropriate. If you have an increased risk of osteonecrosis, it is recommended to have an appointment with your general practitioner or LATER doctor at least every five years.

Advantages and disadvantages of regular DEXA scans

Advantages

Low bone mineral density and weak bones can be detected at an early stage
Treatment (before the end of puberty) may be more effective and help prevent bone fractures

Disadvantages

Sometimes there is a misdiagnosis: bones may appear weak, but there is no increased fracture risk
It is uncertain whether early treatment of weak bones leads to better long-term health

What happens if I have bone problems?

If you have bone problems, your doctor will likely refer you to a specialist. Depending on your symptoms and signs, this may be:

Endocrinologist (specialist in hormones and metabolism)
Rheumatologist (specialist in autoimmune and inflammatory diseases of muscles and joints)
Orthopedic surgeon (specialist in bones and joints)

The specialist will discuss treatment options with you.

What else can I do?

Living with (an increased risk of) bone problems can be difficult. Talking with friends and family can help. Contact with others in a similar situation can also be supportive, for example through a patient organization such as VOX, part of the Childhood Cancer Association Netherlands.

Take good care of yourself. A healthy lifestyle can reduce the risk of bone problems. Physical activity is especially important, as it helps strengthen bones. Aim to be physically active for at least 2.5 hours per week, for example by cycling, playing tennis, or doing household chores. In addition, do bone-strengthening activities twice a week, such as running or strength training with weights or resistance bands. Also take care of your mental well-being. Small changes can already have a positive effect on your physical and mental health.

Calcium and vitamin D are important for keeping bones strong. Aim for at least 10 µg (micrograms) of vitamin D and at least 500 mg (milligrams) of calcium per day.

Calcium

Calcium is found in dairy products, nuts, kale, and bread. The Calcium Calculator of the Osteoporosis Association provides an overview of calcium content in foods.
Fatty fish, margarine, low-fat spreads, and mushrooms contain vitamin D.

Vitamin D

Your body also produces vitamin D when exposed to sunlight. Keep in mind that sunlight can be harmful, so always use sunscreen with a high protection factor (SPF 30 or higher).
If you do not get enough calcium or vitamin D from food or sunlight, you can take calcium and/or vitamin D supplements. The Health Council advises women over the age of 50 to take 10 micrograms (µg) of vitamin D daily.

If you are underweight, ask your doctor whether you need nutritional supplements. If you have fragile bones, consider ways to prevent falls. For example, remove tripping hazards at home, have your eyesight checked, and wear supportive footwear. An occupational therapist may help if needed.

It is important to know that you have an increased risk of bone problems and to recognize the symptoms and signs. If you have questions or feel worried after reading this information, contact your general practitioner or LATER doctor.

Where can I find more information?

Healthy lifestyle
Mental health
Second cancer: bone tumor

The PanCare PLAIN Language Summaries provide links to reliable information in English. You can search online for information about bone problems, but keep in mind that this information may not always be up to date or accurate.

Disclaimer

This information is based on the PLAIN-language summary of the guideline prepared by the PanCare PLAIN Information Group and has been adapted where necessary to the Dutch LATER guideline. Do not rely solely on this information for symptoms or signs; consult your GP, LATER physician, or specialist.