By Jane Elliott
BBC News Health Reporter
Tracey says women need more advice
When Tracey Springthorpe's breast cancer spread to her bones and skin she knew the prognosis was poor.
As a former Macmillan Cancer nurse, she was aware of the treatments available to prolong her life and where to go for help.
But she found little if any support mechanisms available for women with secondary cancer (where the breast cancer cells have broken away from the initial tumour and spread to another part of the body where it may form a new tumour).
"There seems to be a gap between people with primary breast cancer and end of life care. These have well established services, but we sort of fall in the middle.
"There are lots of treatments and the women have lots of questions, but there is no-one to discuss them with.
"The most important thing is to get more secondary breast cancer nurses. To do this sort of work you need to have somebody who is highly skilled because it is dealing with oncology symptom control and emotional support."
That is why Tracey has enrolled to fill in a questionnaire by two leading breast cancer charities.
Breast Cancer Care and Breast Cancer Campaign hope to recruit about 300 women like Tracey to help them determine what improvements they would like to see to secondary breast cancer care.
They will recruit women from two cancer centres in Southampton and Portsmouth as well as women who complete their online questionnaire.
From those who take part in the study, 30 women will be invited to go on to the second phase. This will involve hour- long interviews, three times over the period of a year (at the beginning, after six months and at 12 months), to construct personal accounts of their practical and emotional experience of their illness.
It is hoped that the findings of this research will improve the experience of those women who are living with secondary breast cancer by providing information for patients.
It is also hoped that the findings will offer clinicians, health service leaders and policy makers a better understanding of the impact of the disease on those that are affected by it so that health services can be developed to provide for their needs.
Tracey first noticed her lump the morning after her wedding in 2000. Two years later she was told the grim news that her cancer had spread.
She said she became aware she was venturing into unknown territory as everything appeared to be geared up for the women with primary breast cancer and not women like herself.
"Everyone is worried that there cancer will spread and women like me are a reminder that it can.
"Even the medical profession can be embarrassed because they have not cured you and they think that they have failed. But it is all about giving us quality of life for as long as they can.
"I knew about cancers and treatments and had treatment at the Royal Brompton and the Marsden, but it is vital for everybody to know what is available. If you do not have this information how do you know where to go and who to ask.
"It is nice to be able to ring someone and discuss it with them. Someone to be able to say 'what if' to and someone to ask whether a symptom is a problem. There are lots of people around that can support you, but nobody around you can ask the right questions to."
Tracey said women, like herself, are living longer thanks to medical advances, but they need to be told the positive news.
"People assume women give up when they get a secondary breast cancer diagnosis and I almost did.
"But if you can get over that you can almost live a normal life.
"Over the last three years for a lot of the time I have been well and living a normal life and enjoying myself. I do try not to get bogged down in the nitty gritty and live life to the full. My husband Geoff and I have bought a house in France and we are doing it up.
"Of course I do think will I see it done up?
"But it is like when somebody plans a wedding for 18 months away I think to myself will I be there, but then the next thing is that I am.
"I had a round of chemotherapy which turned out to be very positive. I had been sent home last Christmas and told to have a nice Christmas and though nobody said it was going to be my last Christmas that was the implication, but here I am getting ready for this Christmas."
Liz Reed, breast cancer nurse and researcher on the project said women like Tracey need support.
"Nobody has ever asked these women what it is like to live with secondary breast cancer. When we have finished with this survey hopefully we can use it to influence service provisions for these women.
"We are going to do this by allowing the women to tell their stories. This scheme is quite unique. We have already generated a lot of interest and we are inviting more women to take part.
"These women are part of a growing population and the services are not keeping pace with them."
Jessica Corner, Professor of Cancer and Palliative Care agreed: "Past evaluations of Breast Cancer Care's clinical services for women with secondary breast cancer reveal some common themes, indicating that this group of women can feel isolated and unsupported and that many are having to find their way through health and social services provision by themselves."
For more information call the Breast Cancer Care helpline free on 0808 800 6000 (text phone 0808 800 6001) and to complete the survey log onto their website.