The Importance of Conversation Following a Prostate Cancer Diagnosis

If you have been recently diagnosed with prostate cancer, there will be many emotionally challenging conversations that you will need to have. They will range from speaking to your doctor about the symptoms and available treatments to telling your family and loved ones about your diagnosis. Opening up and talking about your diagnosis can be scary, but these extremely important conversations can make a big difference to the way your prostate cancer is managed, the way you live your daily life and the long-term outcome of your disease.

The information that we provide throughout this resource gives you some important guidance on the different conversations and decisions that you might need to have following your prostate cancer diagnosis. But, because no two diagnosis are identical and each man is different, it’s important that you have conversations and make decisions based on what personally feels right for you. Always remember, there are no rules on how to do things when faced with prostate cancer.

How Prostate Cancer Can Affect You Mentally 

Receiving a prostate cancer diagnosis is a life-changing experience for yourself and your family. During and after your treatment you are likely to experience a whole range of emotions. Common emotions include sadness, anxiety, fear and anger. It’s natural to feel overwhelmed and frightened when finding out about a prostate cancer diagnosis. It can have a huge impact on the way you live your life during treatment and beyond as well as the lives of the people that care about you.

There is no set way for you to feel and your emotions may fluctuate to extremes. Some days you might feel very positive and others very anxious. Some less well informed people might actually tell you to remain positive following prostate cancer diagnosis and that your mood can affect the effectiveness of your treatment. This is completely not true, and some men can find this extremely hurtful. It might make you feel even more anxious and frightened but don’t worry; it isn’t going to affect the efficacy of your treatment.

How to Deal With The Various Emotions

Just as prostate cancer affects your physical health, it can bring up a range of emotions you’re not used to dealing with. It can also make existing emotions seem more intense. They may change daily, hourly, or even every minute. This is true whether you’re currently undergoing treatment or have finished your course of treatment. But, the most important thing to remember is that these feelings are all to be expected.

Worry and Anxiety 

When you receive a prostate cancer diagnosis, you are likely to worry about the impact it will have on you, your loved ones, and what the future might hold. Prostate cancer can affect your entire family and talking to each other openly can help you all cope together. You may get anxious and worry about appointments for treatment or tests. These feelings might come and go, or you may experience them a great deal of the time. If worry and anxiety gets out of control, then it may affect your everyday life, and you may feel tired (but not able to sleep), unable to concentrate and irritable. The physical symptoms of worry and anxiety can include:

  • Heart palpitations
  • Feeling nauseous
  • Difficulty focusing
  • Heavy sweating
  • Restlessness

Part of coping with prostate cancer is looking after your mental health. So, it’s very important to speak to your doctor if you are having problems with worry and anxiety. Some GPs and hospitals have in-house counsellors that you can talk to. Just discussing how you feel and what’s making you anxious can help you put things into perspective.

Anger 

Having prostate cancer can sometimes make you feel angry because you might not be able to do the things you used to before your diagnosis. But, feeling angry is a natural response, and you shouldn’t feel guilty about having these emotions. However, anger does become a problem is starts to affect the relationships you have with your family and friends. This is because they might feel that you are angry with them rather than because you have prostate cancer. They might also feel angry that you have to deal with the cancer or that it has also affected the way they live their daily lives. Your family and friends might find that it helps to speak to someone about how they are feeling too.

Depression

Feeling sad isn’t unusual when living with prostate cancer. However, an on-going low mood that doesn’t go away after a couple of weeks can be a sign of depression. If you have suffered from depression in the past, then you may be more likely to get depression following a prostate cancer diagnosis. But, don’t worry, depression is common and can be treated. If you are depressed, you may suffer from low moods all the time and no longer enjoy the things you used to before your diagnosis. Some symptoms can include difficulty getting to sleep, feeling restless and having no appetite. You might not even realise that you are suffering from depression because it comes on gradually, and the people around you might notice it first. They might try to approach and talk to you about it and then suggest that you get some help.

If you think you have depression, the first you need to do is book an appointment to see your GP or consultant. There are a range of treatments they may recommend including cognitive behavioural therapy (CBT), counselling and antidepressant medication. Your doctor might suggest one or more of these, but there are also ways that you can help yourself.

The First Conversation Is With Yourself

Receiving a prostate cancer diagnosis can be a huge shock. That is why the first conversation you need to have is with yourself. As you try to process all the information you have been provided, it can take weeks or months for all of it to fully sink in. But, please remember that this is completely fine. Take all the time you need (within the parameters of the urgency of treatment pathway) and don’t be afraid to ask for support from others.

The Conversation With Your Loved Ones

Spend some time thinking about who you want to tell about your diagnosis and how much detail you want to go into. This is likely to differ across the range of people that you have in your life, such as a partner or spouse, children, brothers (who may be at higher risk of prostate cancer), friends and co-workers.

You might be nervous about having a conversation about your diagnosis with the people you care about for a few reasons, such as not wanting to upset them, not wanting to show them that you are upset, or you’re worried about how they might react. All people respond differently to bad news and can become upset or angry together with being supportive and sympathetic, and it can be very difficult to deal with unexpected responses. But, remember that there is always someone who is completely unconnected to you who can help you in these difficult situations.

Healthcare organisations and patient helplines offer the chance to speak to doctors, cancer specialists and other men living with prostate cancer.

Talking to Your Partner About The Sexual Effects

Prostate cancer and the treatment you receive can affect you sexually, and the majority of men find that their sex life changes. Some men question their masculinity when they cannot get an erection or find that they have no libido. If you experience this, then you might find it upsetting. Even if you use medication to help, having sex with your partner may take some getting used to as it may well be different to before your diagnosis. But, you can talk to your doctor about these feelings and counselling may also help. You might think that this is unnecessary if you are in a long term relationship and presume that you know everything about your partner, but this isn’t always the case.

Many men return to a level of acceptable functionality following treatment but be able to find satisfying ways to have a sex life even though your erectile function may not be optimal. Your partner may also have concerns about the way you feel about your sex life as well as concerns about your health. So, talking about your feelings is extremely important during this time. You need to remember that you can’t guess or assume what your partners wants. You need to have an open and honest discussion with each other.

Remember, You’re Not Alone

Talking about prostate cancer isn’t easy because it’s hard to know what to say. And, it’s difficult to know how family and friends are going to react. You might avoid talking about it because you don’t want people to get upset, but it’s important to talk and remember that you are not alone. It can help you understand the way you are feeling and help you feel more in control. It can help make your relationships stronger and help others understand what you’re going through. Once they know what you’re going through, they will want to help in any way they can.

There is no right or wrong way to talk about prostate cancer. Who you talk to may differ and depend on the type of relationship you have with each person. However, some of these tips can give you some ideas.

Prepare Yourself

First, you need to decide who you want to tell and how you want to tell them (that being maybe over the phone or in-person). Think about what you want to say and how much detail you want to go into. Try to also think of the questions that people might ask and come up with some simple answers.

Be As Honest As You Can About Your Feelings

You don’t need to protect people by hiding behind your emotions; it’s healthy to express them. If you are not sure how you feel, then say so. Once you start talking, you might find that it comes naturally.

Ease Yourself Into The Conversation

It’s important to ease into the conversation slowly by letting the person know that you have something serious that you need to tell them.

Give Information in Small Chunks

People will find it easier to understand if you give them information in small chunks by using a few sentences at a time. Also, check that the person you are talking to understands what you are saying.

Don’t Force Your Words

Most men find that are times when they want to share information and times when they don’t feel comfortable doing so. Be completely honest if there are times when you don’t want to talk but also respect others who are not ready to talk either.

Choose Someone To Speak on Your Behalf

It can get exhausting to keep talking about your diagnosis or provide people with updates when you are receiving treatment. And, you don’t have to tell everyone personally. You can ask a close friend or family member to share the news with as many people as you are comfortable with.

Patient Support Groups 

Many men with prostate cancer find that attending a support group really helps them. People often imagine that these types of support groups consist of sitting together in a circle and telling each other about yourself. But, this simply isn’t the case. Patient support groups often involve talks and activities that have nothing to do with prostate cancer. Information and advice is also provided by other patients and healthcare professionals on the management of prostate cancer. Many men like the fact that people in these support groups are not linked to their personal life so they can be more honest about their mental health and how they feel about living with prostate cancer.

Most importantly, attending a patient support group is a chance to meet other men that are living with prostate cancer. Never underestimate how much of a positive impact this can have or how much you can help other men just by having an honest conversation with them. Many support groups also welcome the families of men who have prostate cancer, so if you want to bring your loved ones with you for further support, then this is possible.

We Are Here If You Need Guidance 

Prost8 UK as a charity is working with forward-looking hospitals and clinicians (and you the public) to raise funds to deploy better equipment to accelerate access to minimally invasive treatments as the least impact the treatment has on your lifestyle after cancer then the less impact it will have on your mental health too. Prost8 UK is also lobbying the NHS to roll better treatments out faster than currently planned. However, we are also here for all men who need guidance about talking to their loved ones about a prostate cancer diagnosis. We are often able to help direct you to the best sources of help and/or resources.  If you would like help then please do not hesitate to get in touch today by visiting our contact page. We want to help men feel as comfortable as they can when speaking about their prostate cancer diagnosis.

Prostate Cancer Grading and The Gleason Score Explained

When prostate cancer is graded, a system is used known as the Gleason Score to determine how aggressive the cancer is. The Gleason Score ranges from 1-5 and describes how much of the tissue taken from a biopsy looks like healthy tissue or abnormal tissue.

When you are diagnosed with cancer, you may find that the doctors looking after you may talk about your Gleason score and what the stage of your prostate cancer is. Your doctors will try and explain things in easily understood language, but some of the terminology used can be somewhat confusing. The following will help to explain the terminology and clarify any questions you may have. If you do not understand what your doctor is saying, tell them and ask for further clarification.

How The Gleason Score Is Determined

Pathologists grade prostate cancer using number from 1-5 based on what tissue looks like under a microscope. This grading system is what is known as The Gleason Score. Because prostate cancers often have areas with different grades, 2 grades are assigned to make up the majority of cells affected by the cancer. These 2 grades are added to yield the Gleason score. The highest a score can be is 10.

The first number that is assigned is the grade that is most common in the cancerous tumour. For example, if the score is written as 2+3, this means that the tumour is grade 2 and less is 3, which is added up to make a Gleason Score of 5. The higher that the score is, the most likely it is that the cancer will grow and spread more quickly than a lower score.

Grades 1 and 2 are not usually used for biopsies; the lowest score found on a biopsy is 6. These types of cancers are typically called low-grade and are likely to be less aggressive. Cancers that score 8-10 are considered high-grade. They are likely to grow and spread quickly. However, a cancer that scores 9-10 is twice as likely to grow and spread quickly as cancer with a score of 8 would.

Can The Gleason Score Really Tell The Cancer Grade for The Entire Prostate?

Biopsies are samples of tissues that are taken from different areas of the entire prostate. The Gleason Score that is determined following a biopsy reflects the cancer’s overall grade. In most cases, multiple biopsies are taken from the prostate to reduce the risk of over or underscoring.

TNM Staging

TNM staging is a system that is used by doctors to stage prostate cancer. Doctors use this information to determine what the best course of treatment is for a patient. The most suitable treatment option depends on the stage of the cancer, the severity of symptoms and a man’s general health status. TMN stands for Tumour, Node, Metastasis.

T – Tumour

Tumour (T) describes the size and extent of the area affected by the cancer (tumour). There are 4 stages of cancer stage in prostate cancer. This is T1 to T4.

T1

T1 staging means that the cancerous cells are too small to be seen on a scan or felt during a prostate examination. T1 is divided into T1a, T1b and T1c.

  • T1a means the cancer consists of no more than 5% of the removed tissue.
  • T1b means the cancer of consists of more than 5% of the removed tissue.
  • T1c cancers are normally found following a biopsy, for example, after a raised PSA level has been discovered.

T2

T2 staging means the cancer is entirely inside the prostate gland. T2 is divided into T2a, T2b and T2c.

  • T2a means the cancerous cells are only in half of one side of the prostate gland.
  • T2b means that the cancer is in more than half of one side of the prostate but has not grown and spread to the other side of the gland.
  • T2c means the cancer has affected both sides of the prostate gland. But, hasn’t spread to other parts of the body.

T3

T3 staging means the cancer has broken through the covering of the prostate gland. T3 is divided into T3a and T3b.

  • T3a means the cancer has broken through the covering of the prostate which is known as the capsule.
  • T3b means the cancer has grown and spread to the seminal vesicles.

T4

T4 means the cancer has grown and spread to other organs.

N – Node

Node (N) describes whether the cancer has spread to the lymph nodes. Lymph nodes are part of the immune system and are found throughout the body. The lymph nodes close to the prostate gland are a commonplace for prostate cancer to spread to. Symptoms depend on which lymph nodes are affected by the cancer. The most common is swollen lymph nodes. N is split into N0 and N1.

  • N0 means that the lymph nodes don’t contain cancerous cells.
  • N1 means there are cancerous cells in the lymph nodes.

M – Metastasis

Metastasis (M) means that the cancer has spread to other parts of the body from where it first started. M0 and M1 are the 2 stages of Metastasis.

  • M0 means the cancer hasn’t spread to other parts of the body.
  • M1 means the cancer has grown and spread to other parts of the body outside the pelvis. M1 is split into M1a, M1b and M1c.
  • M1a means there are cancerous cells in the lymph nodes that are outside of the pelvis area.
  • M1b means there are cancerous cells in the bone.
  • M1c means there are cancerous cells in other body parts or organs.

Treatment

The Gleason Score helps a medical team decide the best course of treatment. But, the type of treatment will also depend on a few other things, including:

  • Age and general health status
  • PSA blood test levels
  • The type of cells that the cancer originated from
  • How a patient feels about the suggested treatment(s)
  • What the cells look like under a microscope

A patient might not receive treatment straight away. Sometimes a medical team like to monitor cancer and start treatment if it starts to grow or spread. If a patient does start to receive treatment, this can include:

  • Surgery to completely remove the prostate
  • Chemotherapy
  • Internal or external radiotherapy
  • Hormone therapy
  • Cryotherapy (Focal Ablation)
  • High Intensity Focal Ultrasound (Focal Ablation)

HIFU and Why Prost8UK Are Campaigning

At Prost8 UK, we strongly believe in promoting less invasive treatment options for men with early-stage non-metastatic prostate cancer, including Focal Ablation. The most common version of Focal Ablation is HIFU (high intensity focal ultrasound) which focuses sound waves to create a point of heat which destroys the cancerous cells with minimal damage to surrounding healthy tissue. We also campaign for earlier awareness of the symptoms through newer, simpler and more accurate prostate cancer screening. If you would like to support our very important cause and help us help all men in the UK, then please visit our donation page today.

Prostate Cancer Grading and The Gleason Score Explained

Written by Lloyd Parkinson. 

Endorsed by: 

Professor Hashim U. Ahmed PhD, FRCS(Urol), BM, BCh, BA(Hons) – Chair & Professor of Urology, Imperial College London. Chair, NCRI Prostate Research Group. 

Major Mark Vertue TD MBA, BSc Hons, Cert Ed, RN – Head of Department and Trustee & Clinical Director at Prost8 UK. 

Victor Griffin – Expert clinical application specialist of the HIFU system with Sonacare Medical Inc., supporting clinical trials in the UK and surgical teams internationally. 

Paul Sayer – CEO Prost8 UK and lead for the campaign to access less invasive treatment pathways for men with early stage prostate cancer.