Helping you through breast cancer treatment

Some key points about secondary breast cancer

If you’re a primary breast cancer patient, or you’ve had primary breast cancer, you might want to find out a little bit more about secondary breast cancer once you have completed your treatment (or even during your treatment). It can be quite worrying to think about the recurrence and spread of cancer, but if you want to know more, here is some information to get you started and some signposts directing you to more information and support …

Many thanks to Liz O’Riordan, (breast surgeon, co-author of best-selling ‘The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control’ and speaker) for contributing to and checking this page.

1.What is secondary breast cancer? Secondary breast cancer is stage 4 breast cancer and is also known as “advanced” breast cancer or “metastatic” breast cancer. It happens when breast cancer cells that have been ‘sleeping’ in the blood or lymphatic system wake up and spread to other parts of the body, despite all your previous treatment to try to prevent this happening. Roughly five in every 100 people with breast cancer already have secondaries when their cancer is first diagnosed * and some people who’ve had primary breast cancer go on to develop secondary breast cancer a number of years after their primary diagnosis. According to Liz (breast cancer surgeon and co-author of ‘The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control’ ) up to a third of people who’ve had primary breast cancer will go on to develop metastatic cancer. Your risk depends on lots of different factors, and this doesn’t mean that everyone has a 1 in 3 chance of getting secondary breast cancer. It is estimated that around 35,000 people are currently living with secondary breast cancer in the UK.**  There is currently no cure for secondary breast cancer.  Depending on a number of factors (including how far the cancer has spread, where it has spread to and for how long the cancer has been spreading) the length of time that someone can survive after a diagnosis of secondary breast cancer varies greatly (up to a number of years) and it’s spread can often (but not always) be controlled with treatments.

*Statistics courtesy of Cancer Research UK

**Statistics courtesy of Breast Cancer Now

2. What is the difference between secondary breast cancer and a recurrence of breast cancer? It is also worth pointing out here that there is also a risk of developing primary breast cancer again (maybe in the other breast for example) or a local recurrence of the same primary breast cancer that you originally had. The chances of you having a local recurrence depends on your type/stage/grade of breast cancer, your reaction to treatment and various other factors that are all personal to you. There are ways in which oncologists can calculate a patient’s risk of a recurrence – some oncologists will tell you as a matter of course what your risk is, whilst others will not. If you want to know, you can ask – but think very carefully before asking because once you know, you can’t un-know the answer. For more information on recurrence take a look at the Breast Cancer Now information page.

3. You may, or may not, be told by your oncologist about the risks and signs of developing secondary breast cancer when you finish primary breast cancer treatment. Not all oncologists will discuss this with you. In fact, it seems fairly common to not be told, so if you want to know more about this, don’t be afraid to ask your oncologist about the risks of secondary breast cancer and what you should be looking out for. See our list of suggested questions that you can ask your oncologist here. These will provide you with a starting point from which to have a conversation about this.

4. Educate yourself. Don’t be afraid to ask your medical team about secondary breast cancer and to read around a bit on the topic. If you’re not up to googling (and actually that is probably not the best thing to do as you don’t know what you might find), then use the resources in this article as a starting point and just read what you feel comfortable reading. I’ve listed below, lots of places where you can find reliable information about secondary breast cancer.

5. Familiarise yourself with the risks, including your own risk. As part of your reading-up on the subject, you may come across various statistics about the proportion of women who will go on to develop secondary breast cancer after being successfully treated for primary breast cancer. This can be worrying and confusing to read about. So you may want to put this into a personal context and talk to your oncologist about your own personal risks.

6. The trouble with statistics. Remember that statistics (including any statistics relating to your personal risks) are a guide and can be wrong.

7. Familiarise yourself with the signs of secondary breast cancer. These infographics from ABC Diagnosis are a great way of understanding the signs. It should be noted that there are different signs depending on whether you had ductal or lobular primary breast cancer (they spread differently). Remember that you can always take the ABC Diagnosis infographics to your appointment and discuss them with your oncologist or breast care nurse.

Dr. Leanne Bennett is a GP with secondary breast cancer. She has provided this helpful list of common symptoms of secondary breast cancer and suggests that if you experience a persistent new symptom for a few weeks then you should get it checked out:

  • Bony mets – Persistent unexplained pain e.g. back pain. Tends to be worse at night. If pain persists you should contact your GP or breast care nurse
  • Brain – Persistent headaches, nausea or vomiting, visual disturbance or any unusual numbness especially in the arms or legs, loss of balance, behavioural change, memory problems
  • Lung – Cough lasting more than 3 weeks with no other signs of infection. Persistent chest pain
  • Liver – Jaundice (yellow skin) or unexplained itching, bloating in the stomach, pain in your right side
  • Skin – unusual skin lesion like a new nodule, persistent unexplained rash
  • New lymphoedema – swelling of the arm hand or breast area (this is very common post node clearance surgery and radiotherapy, and is not necessarily a symptom of SBC)
  • Lymph – unusual lumps or bumps especially around the breast armpit or collarbone
  • Also feeling generally not right like extreme fatigue, losing your appetite and unintentional weight loss can be a sign of a problem elsewhere.
  • Dr Leanne Bennett also notes: “I remember asking my surgeon and breast care nurse what to do if I had persistent back pain etc or was worried about metastasis, they told me to contact them immediately and they would arrange assessment and scans etc. In my area once you’re finished chemo and targeted therapy etc, you are discharged from oncology, but the breast clinic allow you to have an open appointment for 10 years. You can contact the nurses if you’re worried about a recurrence. This varies in different areas of the UK, you should check with your individual hospital trust.

8. Trust your instincts. Get to know your body and what is normal for you.Insist on checkups and scans when you feel that something isn’t right. Don’t let anyone make you feel like a hypochondriac. You know your body better than anyone else. Don’t be embarrassed to make an appointment if you are worried about something.

9. Always get professional medical advice. Always ask your breast surgeon, oncologist, breast care nurse or medical team about anything is worrying you. Don’t be afraid or embarrassed to ask ANYTHING and as helpful as the cancer community on social media is, don’t rely on social media for medical advice.

10. Live your life and enjoy every day! Despite the risks of recurrence and secondary breast cancer, don’t let it take over your life and cause constant stress and anxiety. Take steps to help with any anxiety (here are some tips) and go out and live your life!

11. What happens if you are diagnosed with secondary breast cancer?
There are lots of treatments and clinical trials for people with secondary breast cancer and there is a huge amount of support available for women with secondary breast cancer. Take a look at this page on Secondary Breast Cancer Resources to point you in the direction of support and advice.

Resources where you can find out more information about the risks and signs of secondary breast cancer:

The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control by Professor Trisha Greenhalgh and Dr Liz O’Riordan – this book covers the risks and signs of SBC plus the questions to ask your oncologist.

Advanced Breast Cancer Community Information to help you and your loved ones learn more about your disease.

Breast Cancer Now Dedicated page on secondary breast cancer.

Cancer Net A list of questions to ask your medical team after a secondary breast cancer diagnosis.

Cancer Research UK dedicated page on secondary breast cancer.

Macmillan Dedicated page on secondary breast cancer.

Make 2nds Count A patient and family focused charity based in Edinburgh – their website provides helpful information as well as being a support community.

Secondary 1st provides some additional statistics about the progression of primary breast cancer to secondary breast cancer.

Please note that no medical advice is being given in this page and you are advised to discuss all concerns and questions with your medical team.

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