We are all aware of the dangers of Googling, even to the point that some nurses have resorted to advising people with triple-negative breast cancer (TNBC) ‘don’t Google’.
Communicating a diagnosis and planned treatment pathway is difficult enough without coping with myths or just misunderstandings.
But patients tell us that not knowing is even worse! So we have produced a new website, www.ukcharityfortnbc.org, which all health professionals can use and can recommend with confidence to people with TNBC, their families and carers.
There are, of course, other reliable websites from other well-established organisations, but the amount of content on TNBC is inevitably limited to the basics, and it’s not always clear to patients what applies to them and what does not.
By exclusively covering TNBC, we are able to make clear the differences in the biology of TNBC and better explain the differences and similarities of treatments compared to other forms of breast cancer.
The new website has also incorporated the learnings from a number of roundtables with people with TNBC, such as the importance of using more of the language they use and understand, and also explaining the medical terms that they will hear from health professionals. For example, the word ‘aggressive’, often used to describe TNBC, is particularly stressful unless used in the correct context.
We have also created individual sections for people with early stage/primary disease and another for those where the cancer has spread from the breast, advanced/metastatic TNBC, as well as separate information leaflets which are printable on any A4 printer. It is still important that information is available for those who prefer paper, or just need something to take home. This once again ensures there is, as far as possible, clarity of communication.
We have also endeavoured to create a more ‘balanced’ narrative. People with TNBC tell us it is often presented with ‘gloom and doom’, even the name is negative! Without ‘hope’, it makes the treatment journey even harder to endure. The website makes it clear that if diagnosed early and treated quickly, many people can be cured. Also in secondary cancer, while not curable, there are an increasing number of treatments available. However, the difficulties and realities of TNBC are also made clear.
Another recurring theme from our roundtables was how difficult it is for patients to find and meet other people ‘just like me’. They can join plenty of breast cancer groups, but again, much of the conversation does not apply to them.
The new website now incorporates a forum incorporating four communities, where people can discuss or just read anything of interest to them online. There is a different community for people with early stage and one for advanced TNBC, plus one for those who have completed their treatment.
Finally, a community for breast cancer nurse specialists to join to make new contacts and discuss experience and advice.
Please come and join in the conversation about TNBC!
Additional information
Who are the UK Charity for Triple Negative Breast Cancer?
The charity (no. 1192952) intends to provide up-to-date, comprehensive and easy-to-understand information to people with triple-negative breast cancer (TNBC), as well as their family and friends.
We represent the ‘voice of TNBC’ to public bodies and health organisations to raise awareness of the needs of people with TNBC and so improve their care.
Donations can be made online, including using PayPal and giving Gift Aid.
What is TNBC?
There are four main types of breast cancers and there are differences in how they behave and are treated. In every case, a biopsy is carried out where a small part of the tumour in the breast is taken to a laboratory to test for ‘receptors’, which are proteins that are on the surface of breast cancer cells.
There are three types of receptors and most breast cancers have one or more of these receptors, but about one in six breast cancers either have none or very few. They are therefore ‘negative’ for all three and are said to be ‘triple-negative’.
There are treatments designed to target receptors, but for people with TNBC, however, these treatments do not work as no receptors are present. TNBC can, however, be treated with chemotherapy and other new treatments are becoming available.
What else is the charity doing for nurses?
In addition to providing the website, the charity has sponsored educational webinars and created a panel to give advice and information on all future activities.
A foundation is to be launched this summer to fund nurses for educational opportunities which include TNBC, and later this year, study days to educate, engage and enthuse breast cancer nurse specialists in TNBC.
If you are interested in either of these things, please make contact by emailing info@ukcharityfortnbc.org