“I’m sorry to keep banging on about womb cancer but it really is too little talked about and for the sake of 8,500 women a year in the UK diagnosed we need to change that. One of the consequences of the lack of focus on womb cancer compared to, say, breast cancer, is that women really struggle to find the information we need.
Where women with breast cancer have the brilliant Breast Cancer Care service where they can consult a huge range of trusted information all in one place and tailored to their specific needs, women with womb cancer are left scrabbling around, searching different sites and resources.
Information on hysterectomy is a good example. As a pre menopausal woman who underwent a total hysterectomy for womb cancer, I struggled to find information about what this would mean for me. TheMacmillan site warned me I would undergo a surgical menopause; a sideways step to general hysterectomy information sites told me what I might experience physically and mentally. It did not answer my questions about whether I could take Hormone Replacement Therapy (HRT) or how to handle getting back in shape when four weeks post operatively I was starting a challenging 18-week course of chemotherapy.
Lymphoedema is another example. Many women with womb cancer undergo removal of lymph nodes and with that comes an increased risk of lymph fluid collecting in our legs. Add the damage to lymph nodes for those who undergo pelvic radiotherapy and the risk grows. It’s a frightening prospect. Yet a straw poll from an online womb cancer support community suggests that too few women are aware of this risk and that information about how to reduce the risk and manage the condition is difficult to find.
Good, trusted, tailored information helps women to take better care of ourselves. It helps us make choices. It helps give us the language to talk about what’s happening to our bodies and helps us to help those caring for us. It removes fear and anxiety and puts control back in our hands at a time when we feel as if our world is spinning out of control.
I know that developing information is expensive and time consuming. Breast Cancer Care employs a team of people full time to work on their resources. I do think it’s time women with womb cancer had access to the same type of service.”
Journalist and health writer Daloni Carlisle was diagnosed with womb cancer in February 2014.