Castration-resistant prostate cancer: what it means and how it is managed in the UK

Most prostate cancer cells depend on testosterone to grow. Hormone therapy works by lowering the amount of testosterone in the body or by blocking its effect on cancer cells, and Cancer Research UK notes that it can control or shrink the cancer and reduce symptoms. Surgical or medical lowering of testosterone is sometimes called castration, which is where the phrase in this page title comes from. It describes the hormone level, not anything about gender or identity.

Castration-resistant prostate cancer is the stage at which the cancer carries on growing even though testosterone is being kept low. Cancer Research UK says doctors may also describe it as hormone resistant prostate cancer. Prostate Cancer UK uses plainer wording for the same situation: it says that over time the cancer may change and may start to grow again.

It is worth separating the label from the outlook. The term describes how the cancer is behaving at a point in time and tells the team that the treatment plan needs reviewing. Both charities stress that there are further treatments to consider.

People on hormone therapy for advanced prostate cancer are monitored. Cancer Research UK says you have regular blood tests to check the level of prostate specific antigen (PSA), and you may have scans such as CT, MRI and bone scans during treatment. Your doctor will also ask about symptoms such as bone pain. Prostate Cancer UK adds that regular blood tests look at whether the cancer is affecting other parts of the body, such as the liver, kidneys or bones.

While hormone therapy is working, Cancer Research UK says the PSA level should stay stable or go down. A rising PSA, new changes on a scan or new symptoms can prompt the team to look more closely. A single raised reading does not settle the question, so doctors usually weigh the trend, the scans and how you feel before changing treatment.

• PSA blood tests at regular intervals, as set by your team.

• Scans such as CT, MRI or bone scan when the team wants to see what the cancer is doing.

• A conversation about symptoms, including pain, tiredness and urinary problems.

The NHS lists lower back pain and losing weight without trying as possible symptoms of advanced prostate cancer, alongside changes in the way you pee and blood in urine or semen. Prostate Cancer UK adds that advanced prostate cancer can cause fatigue, bone pain and problems urinating, and that which symptoms you have depends on where the cancer has spread. Prostate cancer most commonly spreads to the bones and lymph nodes.

Tell your clinical nurse specialist or oncology team about new or worsening pain, new weakness, or changes in how you pass urine, rather than waiting for the next routine appointment. Prostate Cancer UK has a page on metastatic spinal cord compression, which is a situation that needs urgent attention, so ask your team how to reach them out of hours and what to do if you develop new back pain with leg weakness or numbness.

Prostate Cancer UK says you will usually stay on your first type of hormone therapy, even if it is not working so well, because it still helps keep the amount of testosterone in your body low. Other treatments can then be added. Cancer Research UK lists the same broad options for when hormone therapy stops working: a different type of hormone therapy, chemotherapy with or without steroids, an extra hormone therapy drug, radioisotope therapy such as radium-223, and a targeted cancer drug called olaparib.

Which of these is suitable depends on several things. Prostate Cancer UK names your general health, how your cancer has responded so far and which treatments you have already had. Olaparib is a targeted drug, and the way these are chosen links to genetic findings, which is covered in our guide to prostate cancer and BRCA mutations.

Cancer Research UK also describes anti-androgen withdrawal response. If you are taking an anti-androgen tablet, your doctor may ask you to stop it, and in some cases this can make the cancer shrink or stop growing for some time.

Cancer Research UK lists changes to your sex life such as erection difficulties and less desire, hot flushes and sweating, feeling tired and weak, and breast tenderness and swelling as the main side effects of hormone therapy. Side effects of long-term treatment include weight gain, loss of muscle strength, memory problems, mood swings and depression, bone thinning and a risk of heart problems and diabetes.

Prostate Cancer UK explains that long-term hormone therapy can make bones weaker and cause osteoporosis, which can make fractures more likely, and that it may slightly increase the chance of heart disease, stroke, type 2 diabetes and blood clots. These are reasons to keep up with monitoring and to mention new symptoms. Prostate Cancer UK and Cancer Research UK both say that there are ways of reducing side effects, so it is worth raising them with your team.

Prostate Cancer UK says no one can tell you exactly what your outlook will be, because it depends on where the cancer has spread, how quickly it has spread and how well you respond to treatment. It adds that some men may not respond well to one treatment but may respond better to another, and that if a first treatment stops working there are others that can help keep the cancer under control for longer.

The NHS says that if cancer cannot be cured, your care team will respect your decision about whether to continue treatment, and that a palliative care or symptom control team can help manage symptoms and support you and your family. Palliative care in this sense can run alongside active treatment.

In the UK, advanced prostate cancer is usually managed by an NHS multidisciplinary team that includes a urologist and an oncologist, with a clinical nurse specialist as the main contact. Some people also choose to see a private oncologist, often for a second opinion or faster access to a consultation. Which drugs are routinely available can depend on where you live: Prostate Cancer UK notes, for example, that the first-line choice of newer hormone therapy differs between Scotland and England, Wales and Northern Ireland. Ask your team what is funded for your situation and what the alternatives are.