The following information is based on the general experiences of many prostate cancer patients. Your experience may be different. If you have any questions about what prostate cancer treatment services are covered by your health insurance, please contact your health care provider or health insurance provider. This education material was made possible by a Grant from the California Department of Justice, Antitrust Law Section, from litigation settlement funds to benefit Californians diagnosed with cancer or their families.
You and your doctor may be talking about using hormone therapy to control your prostate cancer. It is important for you to learn about hormone therapy so that you will know what to expect and how best to take care of yourself before, during, and after treatment. You will learn:
It is important to think about how you will work these things into your everyday life if you and your doctor decide that hormone therapy is the best way for you to control your prostate cancer..
To help you understand what hormone therapy (or androgen deprivation therapy) is and how it may affect your prostate cancer, it is good for you to understand what hormones are and how they work in your body. Hormones control or manage your body’s activities. Hormones are made by glands in your body and are carried by your blood to all areas in your body. Glands are groups of cells in your body that make and release materials needed by your body.
Testosterone is the main male hormone in your body. It makes you grow hair on your face and body and have a man’s body shape and controls your desire for sex. Testosterone also controls your prostate gland. Your testicles make most of the testosterone in your body. A small amount of testosterone is also made by your adrenal glands. Your adrenal glands are located on top of each kidney. Your adrenal glands also make other hormones.
Prostate cancer is hormone sensitive or hormone dependent. This means that the testosterone in your body helps your prostate cancer to grow. The goal of hormone therapy is to lower the amount of testosterone in your body to stop or slow the growth of your prostate cancer. You can lower the amount of testosterone in your body by taking medicines or having surgery.
Prostate cancer cells need testosterone to grow. These hormones act like a fuel to feed your prostate cancer cells and keep them active. Hormone therapy works by:
By reducing or changing the way your prostate cancer cells get testosterone, your cancer cells will either die or slow down and stop growing.
No, hormone therapy cannot cure your prostate cancer. The goal of hormone therapy is to stop or slow the growth of the prostate cancer cells in your body. Hormone therapy can shrink prostate cancer tumors and may stop or limit the spread of your prostate cancer. Hormone therapy is used to control your prostate cancer.
On its own, hormone therapy can be a good way to control the growth of your prostate cancer. It can also be used with another prostate cancer treatment to help it work better. You should keep in mind that the following things will affect when you have hormone therapy and if you have hormone therapy along with another type of prostate cancer treatment:
Your stage, grade, and Gleason score are determined by a pathologist. A pathologist is a specially trained physician who reviews biopsy results in order to find changes in your body caused by cancer. When you had your prostate biopsy, the pathologist looked at the tissue samples taken from your prostate gland and prepared your biopsy report. The report tells you and your doctor the following information:
This information is used to help your doctor chose the most effective type of hormone therapy for you. The types of hormone therapy include:
Neoadjuvant (ne-o-aj-uh-vuhnt) hormone therapy
If you have early stage prostate cancer, you and your doctor may decide on a course (a series of doses or amounts of medication) of hormone therapy prior to the start of your main prostate cancer treatment. This is called neoadjuvant (ne-oaj- uh-vuhnt) or pre-therapy. This type of hormone therapy is used to help shrink your prostate cancer tumor. This helps make your main treatment more effective. This is very common with men who get radiation therapy.
Adjuvant hormone therapy
Adjuvant (aj-uh-vuhnt) therapy is given to you at the same time you have your main prostate cancer treatment.
Salvage hormone therapy
Sometimes, your prostate cancer can come back or recur after you have surgery or radiation therapy. This recurrence may have happened because some prostate cancer cells moved outside your prostate gland before your treatment. These cells may not have been found because they were too small or there were not enough of them to be found. These cells then started to grow in the area where your prostate gland used to be or in another part of your body. If your PSA (Prostate-Specific Antigen) level starts to rise or your doctor finds an irregularity in your DRE (Digital Rectal Exam) after surgery or radiation therapy, your doctor may start you on hormone therapy. Please see the IMPACT patient education brochure, “When Prostate Cancer Returns,” for more information.
The amount of testosterone your body makes can be lowered by:
There are several types of medicines you can take to lower the amount of testosterone in your body. These are temporary ways to lower the amount of testosterone. When you stop taking these medicines, your testosterone level will begin to go up.
LHRH [(luteinizing-hormone releasing hormone) (loo-tee-uh-nahyzng)] is a normal human hormone that tells your body to make testosterone. An LHRH agonist is a man-made hormone similar to the one made naturally in your body. LHRH agonists work like a light switch to shut off the production of testosterone in your body. When you are given this medicine, your body will stop making the LHRH hormone and your testicles will stop making testosterone. When you are first given this medicine, your body will continue to make testosterone for a couple of weeks. This means that your testosterone level may go up for a week or two and then begin to drop. This type of medicine works as well as having an orchiectomy (an operation to remove your testicles). These medicines are given either monthly or every three months in a shot (injection). The medicine may also be placed as small implants under your skin. The implant gives you a steady dose of medicine. Depending on the type of implant the medicine may last from one to 12 months.
Anti-androgens act like a brick wall. They block the small amount of testosterone made in your adrenal glands from reaching your prostate cancer cells. This keeps your prostate cancer cells from growing. These medicines are pills that are taken orally (by mouth) one to three times a day.
Before you begin taking hormone therapy medicines, your doctor and health care team will tell you:
While these medicines are effective at controlling the growth of your prostate cancer, they do cause side effects or unwanted changes in your body. These side effects and how you can manage them will be talked about later in this booklet in the section “Are there side effects with hormone therapy.”
Hormone therapy medicines may be used alone, with another type of hormone therapy, or with another type of prostate cancer treatment.
Monotherapy is when only one type of hormone therapy medicine is used to lower the amount of testosterone in your body. Monotherapy can be effective in shrinking a prostate cancer tumor, slowing the spread of your prostate cancer, and relieving pain caused by your prostate cancer. Monotherapy may be used with neoadjuvant therapy or adjuvant therapy. Please read “When is Hormone Therapy Used for Prostate Cancer?” to learn more about neoadjuvant and adjuvant therapy.
Combination therapy is when two different types of hormone therapy are used together to lower the amount of testosterone in your body. For example, an LHRH agonist might be used with an anti-androgen medication to keep your body from making any testosterone. This is sometimes called Complete or Maximal Androgen Blockade (CAB or MAB). CAB may be used with neoadjuvant therapy to reduce the size of your prostate cancer. CAB may also be used to help lower the side effects of a medication. For example, men using an LHRH agonist may experience a side effect call a “tumor flare.” This may happen when you start taking an LHRH agonist because it takes a week or two for your testosterone level to go down after you start taking this medicine. Your doctor may give you an anti-androgen for a week to ten days before you start taking your LHRH agonist to lower your risk of getting this side effect.
The majority of the testosterone in your body is made by your testicles. You can lower your testosterone with an operation called an orchiectomy. An orchiectomy is a simple and effective way to lower the amount of testosterone in your body. However, it is a permanent form of hormone therapy.
Before your orchiectomy, you will be given anesthesia. Anesthesia is a medicine given to you by an anesthesiologist so that you do not feel pain during your operation. An anesthesiologist is the doctor who gives you medicine to make you sleep during the surgery and who carefully watches you during the operation. Your doctor will make a small cut (incision) in your scrotum and remove your testicles. Most men who have an orchiectomy go home the same day of their surgery. Your penis and scrotum, the pouch of skin that holds your testicles, will not be damaged during this operation. It will take you about two weeks to heal from the surgery.
Some men are concerned about how their body will look after their testicles are removed. There are testicular prostheses (pros-thee-sez), or artificial testicles, that can be placed in your scrotum to replace the testicles removed during your surgery. The prostheses make your scrotum look like it did before surgery. If you
are concerned about how your body will look, speak with your doctor or health care team about artificial testicles.
Your scrotum may feel a little bit sore and may be swollen. You will be given medicines to relieve the soreness. You may use ice packs for the first day or two after your orchiectomy to help with the swelling. Remember, do not put the ice pack directly on your scrotum. Put a towel or piece of clothing over your scrotum, then place the ice pack on top of it. You will need to keep your incision clean and dry. Your doctor and health care team will tell you how to clean your incision. You will need to avoid heavy lifting or hard activity for one to two weeks following your surgery.
After your orchiectomy, your doctor and health care team will do simple blood tests to check your PSA (Prostate-Specific Antigen) level and to make sure that you do not have anemia. Anemia is when you do not have enough red blood cells to carry oxygen throughout your body. Your doctor may also order a test to check for osteoporosis (os-tee-oh-puh-roh-sis). Osteoporosis is a very common side effect from hormone therapy. When your testosterone level drops it can weaken your bones making them brittle and easier to break.
Possible side effects
An orchiectomy causes sudden hormone changes in your body. This can cause you to have a variety of side effects. These side effects will be talked about later in this booklet in the section, “Will there be side effects with hormone therapy?”
More hormone treatment
When your testicles are removed, the amount of testosterone your body makes is greatly lowered. However, small amounts of testosterone are still made in your adrenal glands. Your doctor may decide to give you an anti-androgen to stop your adrenal glands from making testosterone.
Yes, there are side effects or unwanted changes in your body caused by hormone therapy. Side effects are different from person to person, and may be different from one treatment to the next. Some people have no or very mild side effects. The good news is that there are ways to deal with most of the side effects. The side effects that you have depend on:
The side effects you have from hormone therapy may be acute or chronic. Acute side effects are sometimes called "early side effects." These types of side effects happen soon after the treatment begins and usually go away after you finish your hormone therapy. Other side effects are called chronic side effects or "late side effects." These side effects may happen several months after you start hormone therapy.
In order to reduce your chance of having side effects, your doctor may give you intermittent (on-again, off-again) hormone therapy. If you are on intermittent hormone therapy, your doctor and health care team will carefully watch your PSA (Prostate-Specific Antigen) level. As it begins to go up, you are given hormone therapy medicine to lower your PSA. Another way for you to get intermittent hormone therapy is to take a medicine for a set period of time and then stop for a set period of time. For example, you may take a medicine for six months, stop for six months, and then start again for six months.
The side effects that you may have after you start hormone therapy include: erectile dysfunction or impotence (difficulty in getting or keeping an erection), lower sexual desire (libido), hot flashes, fatigue (or tiredness), weight gain, breast enlargement, osteoporosis, anemia, memory loss, and cardiovascular (kahr-deeoh- vas-kyuh-ler) problems. The following side effects can happen as soon as you start your treatment.
Erection problems (impotence)
Difficulty getting or keeping an erection is a common side effect of hormone therapy for prostate cancer. This is also called impotence. Hormone therapy lowers the amount of testosterone in your body or stops your body from making testosterone.
Lower sex drive (libido)
Testosterone is a hormone that makes you interested in sex. With hormone treatment, you may find that you are not interested in sex. Some men on hormone therapy say that their sexual desire is still strong, but they have problems getting an erection. Or they may have problems reaching orgasm. These side effects are common with all forms of hormone therapy but are different from man to man. Some men are able to feel desire and have erections and orgasms. Your ability to have an erection and your interest in sex may get better several months after your hormone treatment ends. It may be possible for you to have erections again once the treatment stops. This can take three months to a year, or even longer, after you stop the treatment. It depends on the type of hormone therapy you had. Your doctor or healthcare team will speak with you about what might work best for you if you have erectile dysfunction. For more information please read the IMPACT patient education booklet, “Dealing with Erectile Dysfunction During and After Prostate Cancer Treatment.”
Hot flashes and sweating
Hot flashes and sweating are a very common side effect of hormone therapy. They can be upsetting. They are the same as the hot flashes women friends and relatives may have had when going through menopause. Hot flashes happen when your body suddenly feels warm and may begin to sweat, even if the temperature in the room has not changed. When you have a hot flash your face may become flushed and bright red. After a hot flash you may get very cold before you begin to feel a normal temperature again. Hot flashes are caused by your testosterone levels dropping. They may slowly get better as you get used to the treatment. Hot flashes are most common with LHRH agonists, since these medicines stop your body from making testosterone. Unfortunately, in some men hot flashes keep on happening as long as you take the medicine. If hot flashes are a problem for you, ask your doctor or health care team about prescription medicines or alternative medicine approaches to help you. There are also things you can do to make your hot flashes better:
Breast tenderness or growth
Some men may find that their chest becomes sore and that their breasts get a little bit swollen. This is called gynecomastia (gahy-ni-koh-mas-tee-uh). There are medicines and treatments that you doctor or health care team can give you to help with this side effect.
The drop in your testosterone level may make you feel very tired. You may feel tired all the time or you may get tired more easily when you do your daily activities. This is known as fatigue or tiredness. There are things you can do to help deal with this treatment side effect.
Tumor flare pain
Tumor flare pain can worsen when you start hormone treatment and is very common when you take an LHRH agonist. Tumor flare may happen when you start taking an LHRH agonist because it takes a week or two for your testosterone level to go down after you start taking this medicine. Your doctor may give you an anti-androgen for a week to ten days before you start taking your LHRH agonist to lower your risk of getting this side effect. If your pain continues, your doctor or health care team can give you medicines to treat it.
The following side effects may happen if you take hormone treatment for a long period of time. These are:
While you are on hormone therapy you may put on weight. When you have less testosterone, you may lose muscle mass and increase your body fat. This can make it hard to keep your weight down. Watching your diet and exercising regularly may help. Speak with your doctor or health care team if you need help on how to eat healthy or what exercises you can do.
Some men feel that their memory gets worse when they’ve been on hormone treatment for a while. This will not get better while you are taking the hormone treatment, but should get better once you stop hormone therapy. It is natural to feel cheated and upset if you have this particular side effect. There are things you can do to help yourself if you are having memory problems:
Anemia is when you do not have enough red blood cells to carry oxygen throughout your body. The oxygen your red blood cells carry is the fuel your body needs to stay active. There are things you can do to help deal with this treatment side effect:
Bone thinning (osteoporosis)
Men who get hormone therapy for long periods of time may develop thinning of the bones. As your testosterone level drops, it can weaken your bones making them brittle and easier to break. Your doctor may follow the density of your bones during hormone therapy and give you medicines to keep you from having problems from osteoporosis.
There are several ways you can help to lower your osteoporosis risk
Cardiovascular problems are related to your heart and your blood vessels. When your testosterone level drops your blood pressure and cholesterol may increase. This can put you at risk for cardiovascular problems such as a heart attack. The longer you are on hormone therapy the greater your risk is. Your doctor and health care team will carefully watch you for cardiovascular problems while you are on hormone therapy.
What you are able to do will depend on which side effects you have and how bad they are. Many men are able to work, cook meals, and enjoy their usual daily activities when they have hormone therapy for their prostate cancer. Other men find that they need more rest than before they started hormone therapy so they can’t do as much. You should try to keep doing the things you enjoy as long as you don't get too tired.
Nearly all men being treated for prostate cancer say that they feel emotionally upset at different times during their hormone therapy. It's not unusual to feel anxious, depressed, afraid, angry, frustrated, alone, or helpless. Hormone therapy may affect your emotions because it lowers the amount of testosterone in your body.
Some men find it helps to learn about their disease and treatment because it makes them less afraid of their treatment. Find out as much as you want to know. Do not be afraid to ask questions. Your emotional health is as important as your physical health.
Talking with an understanding friend, relative, minister or another patient may be helpful. Your doctor’s office may be able to give you a list of local prostate cancer support groups. There will be men in the support groups who have had hormone therapy. You may also contact the American Cancer Society at 1-800-227-2345 or the National Cancer Institute’s Cancer Information Line at 1-800-422-6237 to find out about cancer resources in your local community.
Many people don't understand prostate cancer or its treatment. They may stay away from you because they're not sure what to say or how to help. Try to be open when you talk to other people about your illness, treatment, needs, and feelings. People will often be willing to lend their support. If you get tired easily, limit your activities and do only the things that mean the most to you.
It is ok if you want to find out about other prostate cancer treatments or ways to help manage the side effects from your treatment besides the ones your doctor tells you about. You might like to try new things to help you deal with treatment and its side effects, such as meditation or relaxation exercises. Make sure that you tell your doctor about other treatments, vitamins, or herbal medications you may take. Remember everyone needs some support during difficult times. Don’t be afraid to ask for help from your doctor or health care team, during or after your treatment.
If you and your doctor are talking about hormone therapy as a way to control your prostate cancer, you should think about the following things:
Yes, you will need regular medical checkups while getting hormone therapy. During these checkups your doctor will look at your medical history and give you a physical exam. Your checkup may include blood tests and imaging tests. For example:
Imaging studies are ways used by doctors to take pictures of the inside of your body, such as x-rays or a CT Scan (also known as a CAT Scan). These check-ups are important because:
During each visit, you should tell your doctor about any:
It is important for you to look out for changes in your health and to tell your doctor or health care team so that they can help you.
Planning Before You Start Hormone Therapy
These tips may help you keep track of the information you and your doctor talk about during your visits:
These questions may be useful to you when you talk to your doctor about your hormone therapy:
About hormone therapy
About your treatment
About Side Effects
About Contacting Your Doctor
It is important for you to keep a copy of your prostate cancer treatment records. You may not always see the same doctor for your follow-up care, so having this information to share with another doctor can be very helpful. The following is a list of medical information you may want to keep.
Remember, you have the right to copies of all your medical paperwork and the actual slides, x-rays and any other information about your health care and treatment. A good idea would be to create two copies of your medical information and keep them in folders. Keep one folder at home and take the other one with you to your doctors’ appointments. Whenever you see a new doctor, it is important for you to let them know about your prostate cancer and any treatment that you have had.
You learned about:
If you have any questions, please talk to your doctor or healthcare team. It is important that you understand what is going on with your treatment. This knowledge will help you take better care of yourself and feel more in control so that you can get the most from your treatment..
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