Useful Links and Resources

Directory of “what is breast cancer?” and related questions

Posted by Sara Liyanage on 08 May 2018

Before I had breast cancer, writes Sara, I thought that there was just “breast cancer”. I was surprised to learn that actually there are all sorts of different types of breast cancer. Here’s a very basic introduction to breast cancer with lots of links where you can find more information.

First, there is primary breast cancer. This is the most common form of breast cancer and it is cancer which manifests in the breast and has either not spread outside the breast, or has just spread to the lymph nodes. Under the umbrella of “primary breast cancer” there are different types, such as inflammatory breast cancer and lobular breast cancer, to give two examples. Have a read of this page from CRUK which provides some excellent information about the different types of breast cancer.

Breast cancer can be found at different points of growth and spread and this is what is commonly known as “grade” (how different the cancer cells are to normal breast cells and how quickly they are growing) and “stage” (the size of the cancer and how far it has spread – breast cancer may be described as stage 1, stage 2, stage 3 or stage 4).

And then there are things called “receptors” which are proteins on the breast cancer cells that hormones or other proteins can attach to and stimulate the cancer to grow. For example, some people have “oestrogen positive breast cancer” which means that oestrogen stimulates the growth of breast cancer cells. Some people have “progesterone positive breast cancer” which means progesterone stimulates the growth of breast cancer. Some people have “HER2+ve” breast cancer which means that the breast cancer cells have a higher than normal level of a protein called HER2 (human epidermal growth factor receptor 2) on their surface, which stimulates them to grow. Some people can have a combination of more than one type of receptor (for example, I had oestrogen positive and HER2+ve breast cancer). And equally, some people may not test positive for any receptors and they have what is called “triple negative” breast cancer (i.e. they test negative for all three receptors).

All of these factors (the type of breast cancer, the stage, the grade and the existence or not of receptors) affect the treatment that will be given (there are many different treatments) and the prognosis. According to Breast Cancer Now, the prognosis for those diagnosed with primary breast cancer is good with almost nine in 10 (87%) women surviving breast cancer for five years or more. (Looking at the survival statistics for breast cancer is complicated and we won’t attempt to cover that in this article – ask your oncologist about this if you want to know more).

But now, let’s move on to a lesser known aspect of breast cancer: secondary breast cancer (this is stage 4 breast cancer and is also known as “advanced” breast cancer or “metastatic” breast cancer). Those of you who haven’t been affected by breast cancer may not even have heard of it.

Secondary breast cancer is where breast cancer cells spread from the first (primary) cancer in the breast through the lymphatic or blood system to other parts of the body. 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.  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

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

For more information please follow the links below…

Further information

Breast Cancer Now: A UK breast cancer charity which provides care, information and support to people affected by breast cancer. The website provides advice on everything from diagnosis to after treatment, including how to tell the children. The website offers information pages, booklets to download or order, a magazine to subscribe to, blogs by people affected by breast cancer, forums where people can talk to others about all aspects of breast cancer, plus a nurses helpline.

Cancer Research UK: This website is not all about research but also provides plenty of helpful information and advice for people going through breast cancer. They have a good list of resources and organisations to help breast cancer patients.

Macmillan: The Macmillan website covers all types of cancers, not just breast cancer. It provides advice for all stages of breast cancer from diagnosis to life after treatment has ended. There are information pages, booklets to download or order, information about support groups near you and a nurses helpline. There is also a lot of information for people supporting someone with cancer.

NHS: The NHS website is vast. The section on breast cancer provides advice for breast cancer patients from symptoms to living with breast cancer.

Glossary of breast cancer terminology – an excellent A to Z list of terms and words you may come across during your breast cancer journey, and what they mean.

The Breast Cancer Now website is a helpful place to start to learn more about what it is, stages, grades and statistics.

Information about breast cancer treatment – If you would like to know more information about diagnosis, tests, staging and grades of breast cancer and treatment then you may wish to download (or order a hard copy to be sent to you in the post) of one of the Breast Cancer Now booklets. They have a booklet on every topic you might want to know about.

Abcdiagnosis – Information about secondary breast cancer and breast reconstruction (whether primary or secondary). This is a website which was set up by Jo who is living with secondary breast cancer with the aim of “supporting primary and secondary breast cancer patients make informed choices with information and up to date news on treatments, breast surgeries, consultants, hospital and useful links.

The Complete Guide to Breast Cancer by Liz O’Riordan and Trisha Greenhalgh is an excellent book where you can learn more about breast cancer.

Breast Cancer Now Guide to Secondary Breast Cancer

BRCA1 and BRCA2 information sheet from the Royal Marsden Hospital

NHS information

Breast Cancer Now Family History of Breast Cancer Guide

Being Dense – this is a super website raising awareness about breast density.

Triple Negative Breast Cancer Foundation – this provides more information about TNBC.

The information and content provided in this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

Reviewed August 2021


Claire diagnosed in 2016
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