Hormone problems
What are hormone problems?
The pituitary gland and hypothalamus, located in the brain, together regulate the hormone system. This complex system controls many processes in the body, such as metabolism, growth, puberty development, and stress hormone release. The hypothalamus and pituitary form the HP-axis. The main hormones are:
Growth hormone
Thyroid hormone
Sex hormones
Stress hormone
Sometimes problems arise when the pituitary produces insufficient or no hormones.
Do I have an increased risk of hormone problems?
Anyone, including people who have never had cancer, can experience hormone problems. However, certain cancer treatments can increase the risk.
The following conditions can increase the risk of hormone problems:
A tumor in or near the HP-axis
Hydrocephalus: increased pressure in the head due to excess cerebrospinal fluid (often a drain is placed)
The following treatments can increase the risk of hormone problems:
Radiotherapy to the HP-axis or an area including the HP-axis
Surgery in or near the HP-axis
You can check your treatment summary to see if you have had any of these conditions or treatments. If you do not have a summary, you can contact the LATER clinic or the hospital where you were treated. Hormone problems do not always result from a brain tumor or treatment; there may be other causes.
What are the symptoms and signs of hormone problems?
Certain symptoms and signs may indicate hormone problems. Even if you do not currently have these symptoms, it is important to recognize them in case they occur in the future.
Severe fatigue (fatigue may also have other causes)
Growth hormone deficiency:
Growth problems in children before or during puberty
Loss of strength and increased need for rest during/after exercise
Body changes, such as more fat around the waist
Thyroid hormone deficiency:
Growth problems in children before or during puberty
Weight gain
Hair loss or thinning hair
Dry skin
Constipation
Feeling cold easily
Concentration problems
Sex hormone deficiency:
In children:
No signs of puberty by age 13 (girls) or 14 (boys), or no further pubertal development for at least 6 months
Signs of early puberty include underarm and pubic hair, breast development (girls), penis and testicle growth (boys)
In men:
Low or no sexual desire
Difficulty achieving an erection
Fertility problems
Mood swings
Loss of facial and/or body hair
In women:
Irregular or absent menstruation
Fertility problems
Mood swings
Low or no sexual desire
Hot flashes
Loss of pubic hair
Stress hormone deficiency (during physical stress or infection):
Low blood pressure, fainting
Nausea, vomiting, abdominal pain
Confusion
If you recognize any of these symptoms or signs, contact your general practitioner or LATER doctor.
I have an increased risk of hormone problems. What tests are needed and when?
If you have an increased risk of hormone problems, the advice is:
During the first 15 years after diagnosis, regularly visit your LATER doctor. Together with your LATER doctor, decide how follow-ups will be scheduled afterwards.
The tests you receive depend on your age.
Before or during puberty, your pediatric oncologist or LATER doctor can:
Measure your growth and puberty development every 6 months
Ask annually about symptoms indicating hormone problems
Perform a physical examination annually
Perform annual blood tests to measure hormone levels
After puberty, your LATER doctor can:
Ask annually about symptoms indicating hormone problems
Perform a physical examination annually
Perform annual blood tests to measure hormone levels
It is advisable to ask your doctor for a referral to a (pediatric) endocrinologist (specialist in hormones) if you have had:
A tumor and/or surgery in or near the HP-axis
Radiotherapy (30 Gy or more) to the HP-axis or an area including the HP-axis
What happens if I have hormone problems?
If you have hormone problems, your general practitioner or LATER doctor will likely refer you to a (pediatric) endocrinologist. The specialist will discuss treatment options with you, such as hormone replacement therapy.
What else can I do?
It can be difficult to live with (an increased risk of) hormone problems. Talking with friends and family can help. Contact with others in a similar situation can also be helpful, for example through a patient organization such as VOX, part of the Dutch Childhood Cancer Organization.
Take good care of yourself. A healthy lifestyle can help reduce some symptoms. Take care of your mental health as well. Small changes can already have a positive effect on your physical and mental well-being. It is important to recognize that you may develop hormone problems and to know the symptoms and signs. If you have questions or concerns after reading this information, contact your general practitioner or LATER doctor.
Where can I find more information?
This LATER website also provides information about:
Healthy lifestyle
Mental health
Premature menopause
Precocious puberty
Fertility problems and sexual complaints in men
The PanCare Plain Language Summaries provide links to reliable information in English. You can search online for information about hormone problems, but be aware that it 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 if you have symptoms or concerns, but consult your GP or LATER specialist.