Introduction

This section is for gay and bisexual men who have been diagnosed with prostate cancer. It contains information to help you understand your diagnosis and your options for treatment and care. It may also be helpful for your partner, family and friends to read this booklet.

In Australia, prostate cancer is the most commonly diagnosed cancer in men. It is estimated that in 2014, about 21,000 Australian men will be diagnosed with prostate cancer, accounting for approximately 30% of all new cancers in men.

Compared with other cancers, prostate cancer has one of the highest 5–year survival rates after diagnosis (92%). This means that of all the men diagnosed with prostate cancer in Australia between 2006 and 2010, it is estimated that 92% will still be alive five years after their diagnosis.

“When I was at the [doctor’s], he said to me, ‘Oh, would you like your partner to come?’ [I said] ‘My partner’s a male.”

An extra challenge for gay and bisexual men diagnosed with prostate cancer is that they may have to tell health professionals about their sexual activities and orientation. Although you may fear discrimination, it’s important to know that discrimination is illegal in Australia. There are laws in every state and territory to protect people’s rights (see Australian Human Rights Commission).

Nonetheless, it can often feel that the healthcare system assumes everyone is straight. Some doctors may not use language that can make gay and bisexual men feel included and comfortable. It is important that you find health professionals with whom you feel comfortable. Feeling at ease with your health professionals will help you get all the information you need. 

For some men, the impact of diagnosis may be minimal or quickly resolved. For others, this impact can be more difficult, requiring further support and help.

Your cancer journey

After being diagnosed with prostate cancer, it’s common for you to see a number of health professionals with different expertise who work together as a team, called a multidisciplinary team (also known as a healthcare team). Best practice treatment and supportive care for people with cancer involves a team of different health professionals. Each team member brings different skills that are important in managing care and in making decisions around your individual needs. The team includes health professionals who are involved in diagnosing your cancer, treating your cancer, managing symptoms and side effects, assisting you with your feelings or concerns during your cancer journey.

The cancer journey is your personal experience of cancer. It’s not the same for everybody, even with the same type of cancer. Depending on your stage of prostate cancer and other underlying conditions, your experience may be quite different.

Diagnosis: Your cancer journey

As the diagram above shows, it can be useful to think of the journey in stages that may include detection, diagnosis, treatment, follow–up care and survivorship. For some, it may include end of life care. Take each stage as it comes so you can break down what feels like an overwhelming situation into smaller, more manageable steps. 

Many people want to take an active part in making decisions about their care. Gaining information about prostate cancer and its treatment will help you make decisions. The aim of this booklet is to provide you with information that you can then use as a guide to further discussions with your doctor and healthcare team about your situation. Being informed enables you to participate in decisions about your care and leads to improved experiences and better care.

What is the prostate?
The male reproductive system (where the prostate is)
The male reproductive system

The prostate is a small gland below the bladder and in front of the rectum in men. It surrounds the urethra, the passage in the penis through which urine and semen (‘cum’) pass. For men, particularly gay and bisexual men, having their prostate massaged during sex can be pleasurable and make orgasms more intense but this is a personal preference.

The prostate is part of the male reproductive system (see diagram). It produces most of the fluid that makes up semen, which enriches and protects sperm. The prostate needs the male hormone testosterone to grow and develop. Testosterone is made by the testicles.

The prostate is often described as the size of a walnut and it is normal for it to get bigger as men age. Sometimes this can cause problems, such as difficulty with urinating. These problems may not be symptoms of cancer. 

What is prostate cancer?
‘I knew very little about prostate cancer … but I also thought it was a cancer that affected men older than myself.’

Prostate cancer occurs when abnormal cells develop in the prostate, forming a malignant tumour (cancerous growth). These cells have the potential to multiply in an uncontrolled way, and possibly spread outside the prostate into nearby or distant parts of the body. 

Prostate cancer is generally a slow–growing disease, and the majority of men with prostate cancer live for many years or decades without painful symptoms, and without it spreading and becoming life–threatening.

 

Symptoms of prostate cancer

In the early stage of prostate cancer, there are usually no symptoms. Later stage prostate cancer may cause symptoms that include:

  • Feeling the frequent or sudden need to urinate
  • Finding it difficult to urinate (e.g. trouble starting, or not being able to urinate when the feeling is there, poor urine flow)
  • Discomfort when urinating
  • Finding blood in urine or semen (‘cum’).

These symptoms are not necessarily caused by prostate cancer. However, it is very important that you speak with a doctor if you have any of these symptoms.

 

The beginning of cancer

Normal Cells
Abnormalcells
Noninvasive
Invasive
What are the tests for diagnosing prostate cancer?

A blood test and/or a physical examination are usually what a doctor will initially do to check the health of the prostate and for possible prostate cancer.

  • Digital Rectal Examination (DRE) – This allows your doctor to feel the size of the prostate and check if there are any abnormalities. Occasionally a cancer can be felt this way, but not always. A normal DRE exam does not rule out prostate cancer. 
  • Blood test (Prostate Specific Antigen – PSA) – PSA is a protein produced in the prostate and can be measured by a blood test. This test identifies whether there has been an increase in this specific protein in your blood

It is possible that the result of the blood test can be inaccurate if the prostate gland has been recently stimulated, such as through anal sex. This means if you had been the receptive partner (‘bottom’) in anal sex prior to the blood test, the result may not be correct. Ejaculation can also affect PSA levels. If you know you’re having a PSA test, it may be a good idea not to have receptive anal sex and ejaculate for at least 48 hours before the test. Talk with your doctor if you’re unsure about anal sex, ejaculation and the PSA test.

As a result of these tests, your doctor may request repeat tests and refer you to a urologist, a doctor who specialises in the urinary and reproductive area. Other tests that your doctor may suggest include:

  • Free PSA test: If you have a moderately raised PSA score and your doctor is not sure whether you need a biopsy, you may have another test to measure the free PSA in your blood – that is, the PSA molecules that are not attached to other blood proteins. A decreased level of free PSA can indicate prostate cancer.
  • Prostate Health Index (PHI): A combination of three blood tests that measure different forms of PSA protein. When reviewed together they provide a personalised risk assessment for prostate cancer. 
  • PCA3: A urine test which measures the level of the PCA3 gene and which, when looked at in conjunction with the PSA test, can help your doctor decide whether you need a biopsy.
  • Biopsy: This is the only way a diagnosis of prostate cancer can be made. Your urologist removes small samples of tissue from your prostate using a very thin, hollow needle, guided by an ultrasound. The prostate is either accessed through the rectum (transrectal) or the perineum (transperineal), which is the area between the anus and scrotum. A biopsy is usually done as an out–patient procedure and your doctor will likely advise a course of antibiotics afterwards to reduce the chance of infection. The tissue is sent to a pathologist to identify whether the cells are malignant (i.e. cancerous) or benign (i.e. non–cancerous). 

If you’re taking medications, let your treating doctor know what they are before the biopsy to reduce the chance of problems.

After the procedure, you may:

  • feel some soreness
  • have light bleeding from your rectum
  • have blood in your urine or stools for a few days
  • notice blood or a rust–coloured tint in your semen (this can last for several weeks after the biopsy but depends on how often you ejaculate).

If you’re concerned about any of these symptoms, tell your treating doctor. 

The results of these tests are looked at together, giving an overall picture of the prostate cancer. It is only then that the correct treatment options can be discussed with you. You can read more about treatment options in one of the booklets in this series: Treating prostate cancer in gay and bisexual men.

Medicare covers some of the costs of procedures and tests used to diagnose prostate cancer, but there may be some ‘out–of–pocket’ costs. Your doctor or a member of your healthcare team can answer your questions about why you need certain procedures and tests, the financial outlay and you can prepare by being informed of the potential financial outlay.

Talk to a member of your healthcare team (e.g. social worker) about what financial and practical support services are available. Talk to your local Medicare office about the ‘Pharmaceutical Benefits Scheme Safety Net’ and the ‘Medicare Safety Net’ on costs of medications and medical bills.


Grading and staging prostate cancer

How your cancer is treated will depend on its grade and stage.

  • Cancer grade – The grade gives an idea of how quickly the cancer may develop. The Gleason system (see overleaf) is used to grade prostate cancer. Low–grade, or low–risk, prostate cancer usually grows slowly and is less likely to spread. Higher grade prostate cancer may be more likely to grow quickly and spread to other body parts.
  • Cancer stage – Stage is a term used to describe the cancer’s size and the extent of its growth within or beyond the prostate. That is, how far it has spread.

Cancer cells on the Gleason grade scale – from 1 (least aggressive) to 5 (most aggressive) 
Gleason Score

As well as using the Gleason score system to grade prostate cancer, your doctor can tell you about the stage of the cancer.

Grading: the Gleason System

Normal tissue has an ordered pattern of growth, but in cancer tissue the pattern is not ordered because of the unpredictable way cancer cells grow. The Gleason scoring system is used to show how abnormal or different the cancer tissue is, when compared with normal tissue. The two most common patterns of growth seen in the biopsy sample are each given a number from 1 to 5, and then these two numbers are added together to give the Gleason grade (e.g. 4+3=7). The greater the difference from the normal tissue pattern, the higher the Gleason score, and the more aggressive the cancer acts in the body. The lowest Gleason score of a cancer that can be found on a prostate biopsy is 6.


Staging: the Tumour–Node–Metastasis (TNM) System

The standard TNM system is used to determine the stage of the cancer – that is, how far it has spread from the prostate. The TNM system has three scores: 

  • T (tumour) StageBy doing a digital rectal examination (DRE), your doctor can feel if the tumour is in the prostate or whether it has spread just outside the prostate and into nearby areas. An MRI scan can also be used for this purpose.
  • N (node) StageThis shows if the cancer has spread to nearby lymph nodes in the pelvic region. A CT (computerised tomography) or MRI (magnetic resonance imaging) scan is used for this purpose.
  • M (metastasis) StageThis shows if the cancer has spread to other parts of the body such as bones. A bone scan is used for this purpose.

This information combined with your Gleason score informs decisions about the best treatment approach.

Diag 2a -T1

The tumour or cancer cannot be felt by the doctor during examination


Diag 2b - T2

The cancer can be felt but it has not spread outside of the prostate


Diag 2c - T3

The cancer has spread outside of the prostate into nearby tissues


Diag 2d - T4

The cancer has spread into nearby organs such as the bladder

Listed below are some questions you may want to ask members of your healthcare team about your diagnosis:
  • What are my results? What do they mean?
  • What is my biopsy result? What does it mean?
  • What is the stage of my prostate cancer? Can you please explain it to me? 
  • What is my Gleason Score? Can you please explain it to me?
  • Do I need more tests? What would these results tell me?
  • Where can I go to get more information about prostate cancer?

These are not the only questions to ask, there may be others that are more useful for you. The important thing is to get information so you understand the diagnosis.

The different stages of prostate cancer

The stage of prostate cancer depends on whether the cancer has spread outside of the prostate or not.

When the cancer is found only in the prostate gland, this is known as localised prostate cancer or early prostate cancer. 

For some men, their prostate cancer grows slowly and is not aggressive. But in other men, the type of cancer grows more quickly and spreads to other parts of the body – this is called advanced prostate cancer.

There are different stages of advanced prostate cancer:

  • Locally advanced – the cancer has extended beyond the prostate and may include seminal vesicles (tumour stage T3) or other surrounding organs such as the bladder or rectum (tumour stage T4)
  • Metastatic – the cancer has spread to distant parts of the body such as bone.

If you want to learn more about other stages of advanced prostate cancer, a series of free booklets on advanced prostate cancer is available through PCFA.

What happens next?

After being diagnosed with prostate cancer, you may want to know what treatment options are available for you. The most appropriate treatment option for you depends on the grade and stage of the disease, the severity of symptoms and your general health. Also, because your prostate cancer may be slow–growing and treatment side effects could be more uncomfortable than your current symptoms, you and your doctor may decide initially on management options such as watchful waiting or active surveillance as ways of monitoring your prostate cancer.

If active treatments are needed, treatment options such as surgery or radiotherapy might be offered. However, all treatments options come with side effects (e.g. sexual difficulties, incontinence, and infertility). Learning about side effects can help you with your treatment decision.

You can read more about management and treatment options in one of the booklets in this series: Treating prostate cancer in gay and bisexual men.

Listed below are some questions you may want to ask members of your healthcare team about your treatment options:
  • Do I need active treatment immediately?
  • What are my treatment options for my stage of prostate cancer?
  • Which option would you recommend for my situation and why? 
  • What is the goal of each treatment option?
  • How will treatment affect my day–to–day life?
  • What are the side effects?

These are not the only questions to ask, there may be others that are more useful for you. The important thing is to get information so you understand the diagnosis.

You can read more about treatment options and side effects in the booklets that are parts of this series: Treating prostate cancer in gay and bisexual men and Managing prostate cancer treatment side effects in gay and bisexual men.

 

Multidisciplinary care

As mentioned at the start of this booklet, during your cancer journey, you will meet a number of health professionals (your healthcare team) who will provide you with advice, treatment and support relating to your prostate cancer. This team of medical and allied health professionals will meet to discuss the treatments that are best for you in your situation and work with you to develop a treatment plan specific for you, and to provide care and follow–up care. 

Generally, there is a member of the healthcare team who will be your main contact person. This person may change during your cancer journey. If you’re unsure who this person is, ask one of the health professionals you’re seeing. Your contact person can talk with other health professionals on your behalf to make sure all your health care needs are met.

The benefits to you in having a healthcare team include:

  • improved communication, coordination and decision making between health professionals about your care
  • improved treatment planning because all treatment types and options are considered by a range of health professionals
  • improved coordination of services
  • improved delivery of services
  • improved quality of life.
When working with your healthcare team, you might see the following health professionals:
  • General Practitioner (GP): Your first port of call who can provide referrals to other specialists and who will monitor your health
  • Urologist*: A specialist in treating diseases of the urinary tract system and male reproductive organs 
  • Radiation Oncologist*: A specialist in the treatment of cancer using radiation therapy
  • Medical Oncologist*: A specialist doctor who uses different drugs to treat cancer (such as chemotherapy) 
  • Endocrinologist*: A doctor who specialises in hormones, body chemistry and bone density
  • *These health professionals also use hormone therapy, also known as androgen deprivation therapy (ADT), as part of their treatment.
  • Pathologist: Conducts tests to assess the stage and aggressiveness of cancer
  • Radiologist: A specialist doctor who examines scans, X–ray and other imaging results
  • Nurse (also known as Urology or Prostate Care Nurse): Provides treatment, support and assistance through all treatment stages
  • Cancer Nurse Coordinator: Guides you and your family through cancer treatments and liaises with other care providers 
  • Continence Nurse: Helps you manage any problems related to continence (urinary or bowel) care after treatment 
  • Pharmacist: Dispenses medications and offers medication advice 
  • Dietitian: Recommends the best eating plan while in treatment and recovery 
  • Physiotherapist: Specialises in movement and function of the body, advises on resuming normal physical activities 
  • Exercise Physiologist: Specialises in the benefits of exercises to help people get fitter for overall health or help people with a medical condition through exercise
  • Occupational Therapist: Helps with the physical side of daily life by providing rehabilitation exercises
  • Social Worker: Advises on support, practical and legal matters, and provides strategies to cope with emotional, social and spiritual challenges
  • Psychologist, Psychiatrist or Counsellor: Provides strategies for decision making, problem solving, and dealing with psychosocial issues; including providing emotional and practical support, and managing anxiety and depression
  • Palliative Care Specialist: Expert in pain and symptom control who works closely with your treatment team
  • Sex Therapist: Helps with sexuality issues by identifying the level of sexual functioning available, and enhancing sexual and relationship functioning
  • Fertility Counsellor: Specialises in helping people with fertility concerns and issues, and can advise on fertility preservation options before starting treatments.
Questions you may want to ask your healthcare team
‘Our relationship with the urologist is very different to our relationship with the GP … you don’t get a half–hour consultation with the urologist …’

Limited consultation time with health professionals can be managed by being prepared. Before your appointment, think about and note down the questions you want to ask. Because of what you may be feeling, it may make it difficult to remember and understand information given to you when you’re talking with your healthcare team. It can be useful to have someone with you to make notes or help remember information you may have missed.

‘[Taking] your partner or friend, sometimes just the friend, is good … and they’ll ask these questions, and they write down the answer … That’s really quite good.’
Listed below are some questions you may want to ask members of your healthcare team about your prostate cancer:
  • Outlook – e.g. What can I expect after I start treatments? What would happen if I don’t start treatment straight away? How will the treatment affect my quality of life?
  • Overall health – e.g. Should I see a dietitian? How can I maintain my energy levels?
  • Support – e.g. Can you give me a referral to a counsellor? Is there a support group for men with prostate cancer or my partner/family? How do I talk with my (male relatives) about their chances of developing this disease?
  • Relationship – e.g. What do I tell my partner and family about prostate cancer? Who could I see to deal with changes in my relationships with my partner or family? How will treatment affect my sex life?
  • Fertility – e.g. How would treatments affect my fertility? What can I do around my fertility before starting treatments?
Taking your time

Being diagnosed with prostate cancer can make you feel like you have no time to think about your treatment options or plan what you want to do next. When information about your cancer is available, for example the grade and stage, your healthcare team can give you some perspective about how much time you have to make decisions, and the sort of decisions you need to make. In many cases, you will have a reasonable amount of time. It is important you take your time to research, gather information, think about how each option may affect you, and talk with your partner, close family or friends about your choices. If you don’t have a partner or feel uncomfortable talking about prostate cancer with your family or friends, you can speak to other gay and bisexual men with prostate cancer through a support group (for details, please see www.pcfa.org.au).

Making the decision about treatment

Making the decision about what treatment to have and when to start it can be challenging. However, the ‘right’ treatment for you depends on a number of things such as:

  • your age
  • the stage of your prostate cancer
  • your current or future relationship plans
  • your current health status
  • the benefits and risks of each treatment option
  • your quality of life.
Listed below are some questions you may want to ask members of your healthcare team about your treatment options: 
  • What are the treatment options available to me?
  • What do the treatments do? (What is the aim of my treatment?)
  • What are the treatment procedures?
  • What are the benefits and how likely are they?
  • How will the treatments be monitored?
  • What are the costs involved with the treatments?
  • How may the treatments affect other health conditions I may have?
  • What are the possible side effects?

The value of being informed

Understanding as much as you can about prostate cancer is one way to take charge and feel in control of your situation and the decisions you need to make. While there is a wide range of information available on the internet, it can be confusing, inaccurate, out of date and sometimes just plain wrong or not relevant to your particular situation.

‘I need to be able to read things beforehand, so that I know what to go and ask [healthcare providers].’

Always make sure information is from credible and reliable sources (e.g. the information is from a known institution or the writer has the relevant expertise and qualifications). Your treating health professionals can assist you with what information is most useful for your situation or whether the information you have is accurate and current.

You can read more about treatment options for prostate cancer in one of the booklets in this series: Treating prostate cancer in gay and bisexual men.

The value of a second opinion

When it comes to your prostate cancer diagnosis, it can be valuable for you to get a second opinion about your results and your treatment options. This doesn’t mean you have less faith in your health professional. Talking it through with another doctor or health professional who understands prostate cancer can help clear up some concerns you have, and help you understand the best treatment option for you.

What feelings am I likely to have?

Most people are concerned that the cancer is likely to be life–threatening. It can take some time for the news of the diagnosis to ‘sink in’. It is common to feel worried or think about it all the time. You may also struggle to take in all the information given to you, and to get clear on making treatment decisions. Even if you’re told you have low–risk prostate cancer, you may be worried about your future. Even after being treated, there may be concerns about whether the cancer may return.

Whether you’re in a relationship or single, you may be worried about the effects that treatments may have on your sex life and future relationships. If you want to have children (e.g. be a donor), you may be worried about infertility. And if you are already in a relationship, you may be worried about the impact of prostate cancer on your partner. Also, some of the treatments may cause worry about body image, and sexual performance with your partner and other sexual partners, which may affect the way you feel about yourself.

‘At the time that I was diagnosed, [having a] social worker or a counsellor who could take me into a different room and talk to me about what I was experiencing just be able to support me would have been very important, which is what my counsellor has ultimately done very well.’

Talking with members of your healthcare team, partner, friends and family can help you deal with these feelings because they may be able to suggest useful ways to manage them.

What should I tell people who are important to me?

Only you can decide when you are ready to tell people who are important to you that you have prostate cancer. As prostate cancer affects the male reproductive system, some men feel shy or uncomfortable about talking about it. Some of the advantages of talking with other people are that they can:

  • help you deal with what is happening for you
  • talk with you in a way that helps you think through problems or consider different viewpoints
  • help you clarify the questions you have and the answers you need
  • identify who is available to support you
  • help you identify other help, resources or information you may need.

You can read more about ways of coping and living with prostate cancer in one of the booklets in this series: Maintaining wellbeing in gay and bisexual men with prostate cancer.

Where to go for help and information

Prostate Cancer Foundation of Australia (PCFA)

PCFA has support groups specifically for gay and bisexual men with prostate cancer
contact-phone-sm 02 9438 7000 or
spacer 1800 220 099 (freecall)
contact-letter-sm enquiries@pcfa.org.au
contact-mouse-sm www.pcfa.org.au (PCFA state offices are listed on the website)


Cancer Australia

Providing national leadership in cancer control and improving outcomes for Australians affected by cancer
contact-phone-sm 02 9357 9400 or
spacer 1800 624 973 (freecall)
contact-mouse-sm www.canceraustralia.gov.au


Cancer Council Australia

Reducing the impact of cancer in Australia through advocacy, research, education and support
contact-mouse-sm www.cancer.org.au


Cancer Council Helpline

A free, confidential telephone information and support service run by Cancer Councils in each State and Territory
contact-phone-sm 13 11 20


Andrology Australia

Providing information about prostate cancer and male reproductive health
contact-phone-sm 1300 303 878 
contact-letter-sm info@andrologyaustralia.org
contact-mouse-sm www.andrologyaustralia.org


Impotence Australia

Providing information about impotence, treatments and accessing support
contact-phone-sm 1800 800 614)
contact-letter-sm admin@impotenceaustralia.com.au
contact-mouse-sm www.impotenceaustralia.com.au


Talk It Over - Men's Line Australia

contact-phone-sm 1300 789 978
contact-mouse-sm www.menslineaus.org.au


beyondblue - The National Depression Initiative

contact-phone-sm 1300 224 636
contact-mouse-sm www.beyondblue.org.au


Lifeline Australia

contact-phone-sm 13 11 14 (24 hour service)
contact-mouse-sm www.beyondblue.org.au


Continence Foundation of Australia

Providing information about bladder and bowel health and accessing support
contact-phone-sm (03) 9347 2522
contact-mouse-sm www.beyondblue.org.au


Cancer Connections

contact-phone-sm 13 11 20
contact-mouse-sm www.cancerconnections.com.au


Black Dog Institute

contact-phone-sm 02 9382 4523
contact-letter-sm blackdog@blackdog.org.au
contact-mouse-sm www.blackdoginstiture.org.au


Relationships Australia

Providing relationship support services for individuals, families and communities
contact-phone-sm 1300 364 277
contact-mouse-sm www.relationships.org.au


Cancer Councils

Providing practical and emotional support, financial and legal assistance, information services and more


Cancer Council ACT

contact-phone-sm 02 6257 9999
contact-letter-sm reception@actcancer.org
contact-mouse-sm www.actcancer.org


Cancer Council NSW

contact-phone-sm 02 9334 1900
contact-letter-sm feedback@nswcc.org.au
contact-mouse-sm www.cancercouncil.com.au


Cancer Council Northern Territory

contact-phone-sm 08 8927 4888
contact-letter-sm admin@cancernt.org.au
contact-mouse-sm www.cancercouncilnt.com.au


Cancer Council Queensland

contact-phone-sm 07 3258 2200
contact-letter-sm info@cancerqld.org.au
contact-mouse-sm www.cancerqld.org.au


Cancer Council South Australia

contact-phone-sm 08 8291 4111
contact-letter-sm tcc@cancersa.org.au
contact-mouse-sm www.cancersa.org.au


Cancer Council Tasmania

contact-phone-sm 03 6233 2030
contact-letter-sm infotas@cancertas.org.au
contact-mouse-sm www.cancertas.org.au


Cancer Council Victoria

contact-phone-sm 03 9635 5000
contact-letter-sm enquiries@cancervic.org.au
contact-mouse-sm www.cancervic.org.au


Cancer Council Western Australia

contact-phone-sm 08 9212 4333
contact-letter-sm inquiries@cancerwa.asn.au
contact-mouse-sm www.cancerwa.asn.au


Gay and Bisexual men specific:

The following organisations can provide you with information and contact details of ‘gay friendly’ health professionals.


Gay and Lesbian Welfare Association (Queensland)

Peer-to-peer telephone counselling service, offering support, referral and information to the Queensland LGBT community 
contact-phone-sm (07) 3017 1717 or
contact-phone-sm 1800 184 527
(freecall) 
contact-mouse-sm www.glwa.org.au


ACON (NSW)

Health promotion organisation based in the gay, lesbian, bisexual and transgender community 
contact-phone-sm (02) 9206 2000 or
contact-phone-sm 1800 063 060 (freecall) 
contact-mouse-sm www.acon.org.au 
contact-letter-sm acon@acon.org.au


Gay & Lesbian Counselling Services of NSW

A volunteer–based community service providing free, anonymous and confidential telephone counselling, information and referral services and support groups for gay men, lesbians, bisexual and transgender persons (GLBT) and people in related communities throughout New South Wales – 7 days 5:30pm – 10:30pm 
contact-phone-sm (02) 8594 9596 or
contact-phone-sm 1800 184 527 (freecall) 
contact-mouse-sm www.glcsnsw.org.au


Gay &; Lesbian Community Services SA/NT

A fully volunteer run and operated peer telephone support, referral and advocacy service for the LGBT community and the wider community of South Australia and Northern Territory – 7pm – 10pm each night 
contact-phone-sm  (08) 8193 0800 
contact-letter-sm  glcs@glcssa.org.au 
contact-mouse-smwww.glcssa.org.au


Further reading

Cancer Council Australia. (2010). Localised prostate cancer – a guide for men and their families. (You can get a free copy of this book by contacting PCFA – Tel: 02 9438 7000/1800 220 099 (freecall) Email: enquiries@pcfa.org.au 

Perlman, G. (Ed.). (2013). What every gay man needs to know about prostate cancer: The essential guide to diagnosis, treatment, and recovery. New York: Magnus Books. 

Perlman, G., & Drescher, J. (Eds.). (2005). A gay man’s guide to prostate cancer. Binghamton: Haworth Medical Press. 

Other sections in this series on prostate cancer for gay and bisexual men: 

Treatment: Treating prostate cancer in gay and bisexual men – The range of treatment options available to you 

Side effects: Managing prostate cancer treatment side effects in gay and bisexual men – The side effects of treatment for prostate cancer with tips on how to cope

Wellbeing: Maintaining wellbeing in gay and bisexual men with prostate cancer – How to deal with the practicalities of living with prostate cancer

Glossary & Sources

Adjuvant therapy or adjuvant treatment – Treatment given in addition to the primary treatment. In prostate cancer, adjuvant treatment often refers to hormone therapy or chemotherapy given after radiotherapy or surgery, which is aimed at destroying any remaining cancer cells. 

Advanced prostate cancer – Prostate cancer that has spread to surrounding tissue or has spread to other parts of the body.

Alternative therapy – Therapy used instead of standard medical treatment. Most alternative therapies have not been scientifically tested, so there is little proof that they work and their side effects are not always known.

Anaemia – A drop in the number of red blood cells in your body. Anaemia decreases the amount of oxygen in the body and may cause tiredness and fatigue, breathlessness, paleness and a poor resistance to infection. 

Brachytherapy – A type of radiotherapy treatment that implants radioactive material sealed in needles or seeds into or near the tumour. 

Biopsy – The removal of a small amount of tissue from the body, for examination under a microscope, to help diagnose a disease. 

Cancer – A term for diseases in which abnormal cells divide without control. 

Chemotherapy – The use of drugs, which kill or slow cell growth, to treat cancer. These are called cytotoxic drugs. 

Clinical trial – Research conducted with the person’s permission, which usually involves a comparison of two or more treatments or diagnostic methods. The aim is to gain a better understanding of the underlying disease process and/or methods to treat it. A clinical trial is conducted with rigorous scientific method for determining the effectiveness of a proposed treatment. 

Cultural engagement – actively involve people with respect to their cultural needs.

Cells – The building blocks of the body. Cells can reproduce themselves exactly, unless they are abnormal or damaged, as are cancer cells. 

Diagnosis – The identification and naming of a person’s disease. 

Digital rectal examination (DRE) – An examination of the prostate gland through the wall of the rectum. Your doctor will insert a finger into the rectum and is able to feel the shape of the prostate gland. Irregularities in the shape and size may be caused by cancer. 

Erectile dysfunction – Inability to achieve or maintain an erection firm enough for penetration.

External beam radiotherapy (EBRT) – Uses x-rays directed from an external machine to destroy cancer cells.

Fertility – Ability to have children.

Grade – A score that describes how quickly the tumour is likely to grow. 

Hormone – A substance that affects how your body works. Some hormones control growth, others control reproduction. They are distributed around the body through the bloodstream. 

Hormone therapy/treatment – Treatment with drugs that minimises the effect of testosterone in the body. This is also known as androgen deprivation therapy (ADT).

Incontinence – Inability to hold or control the loss of urine or faeces. 

Locally advanced prostate cancer – Cancer which has spread beyond the prostate capsule and may include the seminal vesicles but still confined to the prostate region.

Lymph nodes – Also called lymph glands. Small, bean-shaped collections of lymph cells scattered across the lymphatic system. They get rid of bacteria and other harmful things. There are lymph nodes in the neck, armpit, groin and abdomen. 

Lymphoedema – Swelling caused by a build-up of lymph fluid. This happens when lymph nodes do not drain properly, usually after lymph glands are removed or damaged by radiotherapy.

Metastatic prostate cancer – Small groups of cells have spread from the primary tumour site and started to grow in other parts of the body – such as bones.

Multidisciplinary care – This is when medical, nursing and allied health professionals involved in a person’s care work together with the person to consider all treatment options and develop a care plan that best meets the needs of that person. 

Osteoporosis – A decrease in bone mass, causing bones to become fragile. This makes them brittle and liable to break. 

Pelvic floor muscles – The floor of the pelvis is made up of muscle layers and tissues. The layers stretch like a hammock from the tailbone at the back to the pubic bone in front. The pelvic floor muscles support the bladder and bowel. The urethra (urine tube) and rectum (anus) pass through the pelvic floor muscles. 

Perineal (perineum) – The area between the anus and the scrotum. 

Prognosis – The likely outcome of a person’s disease. 

Prostate cancer – Cancer of the prostate, the male organ that sits next to the urinary bladder and contributes to semen (sperm fluid) production. 

Prostate gland – The prostate gland is normally the size of a walnut. It is located between the bladder and the penis and sits in front of the rectum. It produces fluid that forms part of semen.

Prostate specific antigen (PSA) – A protein produced by cells in the prostate gland, which is usually found in the blood in larger than normal amounts when prostate cancer is present. 

Quality of life – An individual’s overall appraisal of their situation and wellbeing. Quality of life encompasses symptoms of the disease and side effects of treatment, functional capacity, social interactions and relationships and occupational functioning.

Radical prostatectomy – A surgical operation that removes the prostate. 

Radiotherapy or radiation oncology – The use of radiation, usually x-rays or gamma rays, to kill tumour cells or injure them so they cannot grow or multiply.

Self-management – An awareness and active participation by people with cancer in their recovery, recuperation and rehabilitation, to minimise the consequences of treatment, promote survival, health and wellbeing.

Shared decision-making – Integration of a patient’s values, goals and concerns with the best available evidence about benefits, risks and uncertainties of treatment, in order to achieve appropriate health care decisions. It involves clinicians and patients making decisions about the patient’s management together.

Side effect – Unintended effects of a drug or treatment. 

Stage – The extent of a cancer and whether the disease has spread from an original site to other parts of the body. 

Staging – Tests to find out, and also a way to describe how far a cancer has spread. Frequently these are based on the tumour, the nodes and the metastases. Staging may be based on clinical or pathological features. 

Standard treatment – The best proven treatment, based on results of past research. 

Support group – People on whom an individual can rely for the provision of emotional caring and concern, and reinforcement of a sense of personal worth and value. Other components of support may include provision of practical or material aid, information, guidance, feedback and validation of the individual’s stressful experiences and coping choices. 

Supportive care – Improving the comfort and quality of life for people with cancer. 

Survivorship – In cancer, survivorship focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to follow-up care, late effects of treatment, second cancers, and quality of life. 

Testicles – Organs which produce sperm and the male hormone testosterone. They are found in the scrotum. 

Testosterone – The major male hormone which is produced by the testicles.

Tumour-Node-Metastasis (TNM) System – A staging system used by clinicians to describe how advanced a particular cancer is, which then informs the type of treatment provided. 

Tumour – An abnormal growth of tissue. It may be localised (benign) or invade adjacent tissues (malignant) or distant tissues (metastatic). 

Urethra – The tube that carries urine from the bladder, and semen, out through the penis and to the outside of the body. 


Sources 

  • American Cancer Society. (2012). Prostate cancer www.cancer.org/acs/groups/cid/ documents/webcontent/003134–pdf.pdf 
  • Australian Institute of Health and Welfare. (2013). Prostate cancer in Australia. Cancer Series no. 79. Cat. No. CAN 76. Canberra: AIHW. 
  • Australian Institute of Health and Welfare. (2012). Cancer in Australia: an overview, 2012. Cancer series no. 74. Cat. no. CAN 70. Canberra: AIHW. 
  • Australian Institute of Health and Welfare. (2012). Cancer incidence projections: Australia, 2011 to 2020. Cancer Series no. 66. Cat. No. CAN 62. Canberra: AIHW. 
  • Branfman, J., & Ekberg Stiritz, S. (2012). Teaching men’s anal pleasure: challenging gender norms with “prostage” education. American Journal of Sexuality Education, 7(4), 404–428. 
  • Cancer Council Australia. (2009). Localised prostate cancer – a guide for men and their families. 
  • Cancer Council Australia (2010). Advanced prostate cancer – a guide for men and their families. 
  • Chambers, S. (2013). Facing the tiger – a guide for men with prostate cancer and the people who love them. Toowong: Australian Academic Press. 
  • Chapman, S., Barratt, A., & Stockler, M. (2010). Let sleeping dogs lie? What men should know before getting tested for prostate cancer. Sydney: Sydney University Press. 
  • Crawford, E. D., Rove, K. O., Trabulsi, E. J., Qian, J., Drewnowska, K. P., Kaminetsky, J. C., Huisman, T.K., Bilwus, M. L., Freedman, S. J., Glover, W. L., & Bostwick, D. G. (2012). Diagnostic performance of PCA3 to detect prostate cancer in men with increased prostate specific antigen: a prospective study of 1,962 cases. The Journal of Urology, 188(5), 1726–1731. 
  • Department of Health. (2012). Multidisciplinary cancer care – literature review. Melbourne: State Government of Victoria. 
  • Department of Human Services. (2006). Patient management framework – genitourinary tumour stream: prostate cancer. Melbourne: State Government of Victoria. 
  • Dowsett, G., Mitchell, A., & O’Keeffe, D. (2012). ‘They just assume everyone’s straight’ – a technical report on prostate cancer and health promotion for gay and bisexual men for the Prostate Cancer Foundation of Australia. Melbourne: Australian Research Centre in Sex, Health & Society, LaTrobe University. 
  • Irwin, L. (2007). Homophobia and heterosexism: implications for nursing and nursing practice. Australian Journal of Advanced Nursing, 25(1), 70–76. 
  • Kirby, R. S., Partin, A. W., Parsons, J. K., & Feneley, M. R. (Eds.). (2008). Treatment methods for early and advanced prostate cancer. London: Informa Healthcare. 
  • Klein, L. T., & Lowe, F. C. (1997). The effects of prostatic manipulation on prostate–specific antigen levels. Urologic Clinics of North America, 24(2), 293–297.
  • Diagnosing prostate cancer in gay and bisexual men 
  • Loeb, S., & Catalona, W. J. (2008). What to do with an abnormal PSA test. The Oncologist, 13(3), 299–305. 
  • Mazokopakis, E. E., Batistakis, A. G., & Starakis, I. K. (2007). The effect of ejaculation on serum total and free prostate–specific antigen concentration. Hellenic Journal of Nuclear Medicine, 10(2), 119. 
  • National Cancer Institute. (2011). Support for people with cancer – taking time (Department of Health & Human Services USA). 
  • Nichol, M. B., Wu, J., Huang, J., Denham, D., Frencher, S. K., & Jacobsen, S. J. (2012). Cost– effectiveness of Prostate Health Index for prostate cancer detection. BJU International, 110(3), 353–362. 
  • Rajaei, M., Momeni, A., Kheiri, S., & Ghaheri, H. (2013). Effect of ejaculation on serum prostate specific antigen level in screening and non–screening population. Journal of Research in Medical Sciences, 18(5), 387–390. 
  • Santillo, V. M., & Lowe, F. C. (2005). Prostate cancer and the gay male. In G. Perlman & J. Drescher (Eds.), A gay man’s guide to prostate cancer (pp. 9–27). New York: Haworth Medical Press. 
  • Tarhan, F., Orçun, A., Küçükercan, Ì., Çamursoy, N., & Kuyumcuoglu, U. (2005). Effect of prostatic massage on serum complexed prostate–specific antigen levels. Urology, 66(6), 1234–1238.

Further reading: 

Cancer Council Australia. (2010). Localised prostate cancer – a guide for men and their families. (You can get a free copy of this book by contacting PCFA – Tel: 02 9438 7000/1800 220 099 (freecall) Email: enquiries@pcfa.org.au 

Perlman, G. (Ed.). (2013). What every gay man needs to know about prostate cancer: The essential guide to diagnosis, treatment, and recovery. New York: Magnus Books. 

Perlman, G., & Drescher, J. (Eds.). (2005). A gay man’s guide to prostate cancer. Binghamton: Haworth Medical Press. 

Other booklets in this series on prostate cancer for gay and bisexual men: 

  • Treatment: Treating prostate cancer in gay and bisexual men – The range of treatment options available to you 
  • Side effects: Managing prostate cancer treatment side effects in gay and bisexual men – The side effects of treatment for prostate cancer with tips on how to cope 
  • Wellbeing: Maintaining wellbeing in gay and bisexual men with prostate cancer – How to deal with the practicalities of living with prostate cancer