TNBC logo TNBC Support has been developed and funded by Gilead Sciences Ltd for people living with TNBC and their carers in the UK and Ireland

I have been diagnosed with TNBC

ABOUT TNBC

There are many different types and stages of breast cancer, which can be confusing and sometimes overwhelming. However, by understanding which type of cancer you have, you will be able to work with your healthcare team to develop the best treatment plan.
About TNBC

What does ‘triple-negative’ mean?

Breast cancer can be divided into different groups by testing for three proteins that are sometimes present on the surface of the cancer cells.

These are oestrogen receptor (ER), progesterone receptor (PR) and human epidermal growth factor receptor 2 (HER2). The ‘triple-negative’ of TNBC relates to the fact that none of these specific proteins are found on the surface of the cancer cells.i

What other definitions are used?

Breast cancer is also defined by:

  • The stage, which relates to the size of your tumour and whether it has spread to other parts of your body. Stages are typically numbered stage 1-4.ii
  • The grade, which relates to how abnormal the cells look through a microscope and gives an idea of how slowly or quickly the cancer may develop.ii

You can find out more about the staging and grading of breast cancer here if you live in the UK: Macmillan Cancer Support – Staging and Grading of Breast Cancer

Or here if you live in Ireland: Irish Cancer Society - Staging and Grading of Breast Cancer

Some other terms you might hear as you navigate TNBC are:

  • Primary: When the term ‘primary’ is used in breast cancer, it means the cancer hasn’t spread beyond the breast or the lymph nodes under the arm.iii
  • Secondary: When cancer spreads from its original or ‘primary’ location, for example, settling and growing in other organs, this is known as ‘secondary’ cancer.iv
  • Advanced: Similarly to ‘secondary’, this means that cancer has spread to other organs beyond the primary site (i.e. within the breast).v
  • Metastatic: When cancer ‘metastasises’, this means it has spread from the primary location to other organs. ‘Metastatic’, ‘advanced’ and ‘secondary’ can all be used to describe when cancer has spread in the body.v If you have advanced, secondary or metastatic breast cancer, your doctor may still refer to the ‘primary cancer’ in the breast as this is where the cancer originated.
Who can get tnbc

who can get tnbc?

While TNBC can affect anyone, including menvi, some groups are more likely to be diagnosed with the triple-negative subtype than others:

  • Women diagnosed with breast cancer under the age of 40 are almost twice as likely to be diagnosed with the triple-negative subtype than women over the age of 50.vii
  • Black women are also disproportionately affected and twice as likely to be diagnosed with TNBC than white or Asian women.viii
Who can get tnbc

How many people have TNBC?

You may hear TNBC referred to as ‘rare’, however of the 50,000 people diagnosed with breast cancer in the UK each year, about 1 in 8 cases are TNBC.xiii Some people find it useful to connect with others with the same diagnosis and share experiences. There are lots of options available to you, such as support groups or online community forums, some of which are anonymous, depending on your preference.

Is TNBC inherited?

Sometimes, people will inherit a gene that can increase the likelihood of developing certain cancers, including breast, ovarian and prostate cancers. One of these genes is called BRCA.

TNBC accounts for 70% of breast tumours caused by BRCA1 mutations, and 16-23% of those caused by BRCA2 mutations.ix

Depending on your diagnosis, you may be offered genetic testing. You can read more about this here if you live in the UK: Breast Cancer Now – Genetic testing for altered breast cancer genes

Or here if you live in Ireland: Irish Cancer Society - Cancer and Genes

what happens
after diagnosis

In the UK and Ireland, you will be referred to a group of cancer specialists who will work with you at your appointments to provide you with the best treatment and care.

Many people find it difficult to take in information during these appointments and so it often helps to take a friend or family member along to hear what is discussed so they can take notes to refer to later. It is also a good idea to write down your questions and/or concerns before your appointment to make sure you cover everything you wanted to talk about.

You can find some suggestions on the types of questions you might want to ask here: Macmillan Cancer Support – Questions to ask your healthcare team

Diagnosis

Additional tests

Waiting for results

  • Waiting to know the stage and grade of your cancer can be a worrying time. There are several options available if you need someone to talk to.

UK:

Macmillan – Waiting for results

Breast Cancer Now - Waiting for breast biopsy results can be a scary time

Ireland:

Irish Cancer Society - Waiting on results

Diagnosis
For more information and support click here

Understanding your treatment decisions

  • When considering treatment options, you should have the opportunity to talk to your specialist breast care nurse or doctor at the hospital in detail and agree the best plan together.
  • If you are unsure about anything to do with your diagnosis or treatment, don’t hesitate to ask for another appointment. This could be with your GP, consultant, or another member of the team, such as a specialist breast care nurse, to discuss your situation.

    More information on the treatment approaches for TNBC can be found at:

    Information on primary TNBC > Treatment options for primary TNBC

    Information on secondary TNBC > Treatment options for secondary TNBC

  • If you are still not comfortable with the decisions being made, you may consider getting a second opinion. Don’t worry that this might upset your doctor; they often ask the opinion of a colleague, especially for complex cases. However, there are advantages and disadvantages to doing this that you should consider.

You can read more on this here if you live in the UK:

Macmillan Cancer Support - Getting a second opinion

Or here if you live in Ireland:

Irish Cancer Society - Getting a second opinion

Information on
primary TNBC

Click to read more >

Useful things to know

  • Being diagnosed with breast cancer can be a lot to process and can feel incredibly isolating. Know that there are people around you to support you and that you can talk to:

UK:

Macmillan – Waiting for results

Breast Cancer Now - Waiting for breast biopsy results can be a scary time

Ireland:

Irish Cancer Society - Waiting on results

Treatment options for primary TNBC

The treatment for TNBC is usually a combination of:

  • Surgery to remove some or all of your breast and lymph nodes (in your armpit)x
  • Chemotherapy which aims to destroy cancer cells using anti-cancer drugs.xi It is often used prior to surgery in people with TNBC to reduce the size of the tumour.
  • Radiotherapy which destroys cancer cells using high-energy x-rays.xi It is often used after surgery and chemotherapy in people with TNBC.
  • Immunotherapy which is a type of treatment that helps the body’s own immune system to seek out and kill cancer cells.xii

More information on these treatments can be found here:

UK:

(note these pages are not TNBC specific)

Macmillan Cancer Support – Types of treatment

Breast Cancer Now – Going through breast cancer treatment

Ireland:

Irish Cancer Society - How is triple negative breast cancer treated

What about hormone therapy?

You may have heard of hormone therapy that is used to treat many breast cancers. However, hormone therapy works by targeting hormone receptors in the breast cancer cells. Because these receptors are not present in triple-negative breast cancer, these treatments are not effective and so chemotherapy is often the main treatment option.

What about clinical trials?

Clinical trials are research studies involving people. They can investigate a lot of different things, including how well a new treatment option works, whether it is safe or is an improvement on currently available treatments.

There are very strict regulations around conducting clinical trials and any new treatment will have gone through a rigorous testing in laboratories before it is given to any humans. There are also lots of different types of trials so understanding exactly what would be involved and taking sufficient time to consider is important, before you give consent to take part. Note that by giving your consent, you are agreeing to take part, however, you can withdraw from the trial at any time without giving a reason.

Finding out about clinical trials

Your oncologist or specialist breast care nurse may discuss clinical trials with you, or you can ask them if there are any in your area that might be suitable for you. Clinical trials have very strict guidelines about who can be involved and so be prepared that you might not be able to take part in a trial. In addition, if you feel that taking part in a trial is not the right option for you, you can decline without giving a reason. This will not affect the care you will receive.

More information on clinical trials including a database of breast cancer clinical trials in the UK can be found here: Cancer Research UK – Research and clinical trials

Information on clinical trials in Ireland can be found here: Irish Cancer Society - Clinical trials

What happens after treatment?

  • After your treatment, you will have regular follow-up appointments and usually a mammogram every year. It is natural to worry during this period and these appointments offer an opportunity to discuss any concerns you have. You can also contact your cancer doctor or nurse at any time if you have concerns or notice new symptoms.

Will the cancer come back?

  • Even after successful treatment, it is possible for your cancer to return.
  • Although research suggests the risk of TNBC coming back or spreading is higher in the first few years than in some other types of breast cancer, after around five years the risks are similar to, and may be lower than, other types of breast cancer.i
  • You can read more about the possible symptoms of breast cancer recurrence here: Breast Cancer Now – Breast cancer recurrence symptoms

Information on
secondary TNBC

Click to read more >

Useful things to know

  • Being diagnosed with breast cancer can be a lot to process and feel incredibly isolating. Know that there are people around you to support you and that you can talk to:

    • UK:

    Macmillan – Waiting for results

    Breast Cancer Now - Waiting for breast biopsy results can be a scary time

    Ireland:

    Irish Cancer Society - Waiting on results

  • Secondary (or metastatic or advanced) breast cancer refers to breast cancer that has spread to other parts of the body. When you have secondary breast cancer, your doctor may still refer to the cancer in the breast as ‘the primary cancer’.
  • Some people may be diagnosed with secondary breast cancer having already been diagnosed and treated for breast cancer, or if their cancer has already spread when they are diagnosed.
  • In secondary breast cancer, the main aim of treatment is to control and slow down the spread of your cancer any further. When the cancer is at bay and there are no visible tumours present, this is known as remission. Even when in remission, there will always remain a risk that the cancer will return.

I didn’t have triple-negative breast cancer before?

  • In some cases, the nature of the breast cancer may have changed between a primary and secondary diagnosis. For example, where a primary tumour may have been hormone receptor positive, the secondary breast cancer may have transformed into triple-negative breast cancer.

Treatment options for secondary TNBC

The treatment for secondary TNBC is usually a combination of:
  • Chemotherapy which aims to destroy cancer cells using anti-cancer drugs.xi It can often be used prior to surgery to reduce the size of the tumour.
  • Radiotherapy which destroys cancer cells using high-energy x-rays.xi It is sometimes used during treatment for secondary breast cancer.
  • Immunotherapy which is a type of treatment that helps the body’s own immune system to seek out and kill cancer cells.xii

More information on these treatments can be found here:

UK:

(note these pages are not TNBC specific)

Macmillan Cancer Support – Types of treatment

Breast Cancer Now – Going through breast cancer treatment

Ireland:

Irish Cancer Society - How is triple negative breast cancer treated

What about hormone therapy?

You may have heard of hormone therapy that is used to treat many breast cancers. However, hormone therapy works by targeting hormone receptors in the breast cancer cells. Because these receptors are not present in triple-negative breast cancer, these treatments are not effective and so chemotherapy is often the main treatment option.

What about clinical trials?

Clinical trials are research studies involving people. They can investigate a lot of different things, including how well a new treatment option works, whether it is safe or is an improvement to currently available treatments.

There are very strict regulations around conducting clinical trials and any new treatment will have gone through a rigorous testing in laboratories before it is given to any humans. There are also lots of different types of trials and so understanding exactly what would be involved and taking sufficient time to consider is important before you give consent to take part. Note that by giving your consent, you are agreeing to take part, however, you can withdraw from the trial at any time without giving a reason.

Finding out about clinical trials

Your doctor or specialist nurse may discuss clinical trials with you, or you can ask them if there are any in your area that might be suitable for you. Clinical trials have very strict guidelines about who can be involved and so be prepared that you might not be able to take part in a trial. In addition, if you feel that taking part in a trial is not the right option for you, you can decline without giving a reason. This will not affect the care you will receive.

More information on clinical trials including a database of breast cancer clinical trials in the UK can be found here: Cancer Research UK – Research and clinical trials

Information on clinical trials in Ireland can be found here: Irish Cancer Society - Clinical trials

Supportive care

  • Supportive care (also known as palliative care) is available to anyone to help relieve and prevent certain symptoms, such as pain and fatigue, or to provide psychological support in living with secondary breast cancer. It is often provided alongside your regular medical treatment.
  • Supportive or palliative care is not necessarily end-of-life treatment and can be useful at any time when living with secondary breast cancer.
References