By Jane Elliott
Health reporter, BBC News
When Sue Keir was diagnosed with breast cancer the care she got was superb.
I have tumours in my lungs
A breast care nurse was assigned to support her through all the stages of diagnosis and treatment.
When she was diagnosed with secondary breast cancer, just two years later in October 2005, it was a completely different story.
Despite being told that she there was no cure for her cancer, which had spread to her lungs and possibly her bones, Sue, aged 51, from Leeds, was offered no support network.
When she pressed for a survival rate she was told the textbooks predict she could survive between 12-15 months after diagnosis, but that it could be much longer.
Because of her positive experience with the NHS when she was initially diagnosed, Sue assumed she would automatically get a breast nurse to support her the second time.
But she she was left to come to terms with the realisation that she had a terminal illness without any support at all.
"I just thought they would refer me again to a breast nurse," said Sue.
"But the care was very different when I was diagnosed with secondary breast cancer (when it spreads to another part of the body, generally the bone, liver or lungs).
"They told me what it was and then sent me home.
"When I was diagnosed with the primary cancer my breast care nurse came in and supported me all through my treatment.
"I had a mastectomy and reconstruction and then chemotherapy."
Luckily, Sue was initially deemed eligible for a drugs trial.
Even though she was later ruled out of the trial because her tumour was slightly too small, it did enable her to get access to specialist support care from a Macmillan nurse.
But Sue said had this not happened she would not have know who to go to for advice about secondary breast cancer.
"When I asked them why nobody had referred me for support, they said I was meant to be referred by my GP.
"But after the initial appointment to see him all my contact was with the hospital so how could he have referred me for help?
"There are things in place to help people like me, but the system fails.
"When you are given such a diagnosis a lot of women would not have to energy to telephone round to get help, it should be offered to them."
The charity Breast Cancer Care believes there could be hundreds of women in Sue's position who are not getting the levels of support they need.
It has set up a Secondary Breast Cancer Taskforce to give these women a voice.
Over the next two years the taskforce will compile statistics and then use the data to lobby for better levels of care.
Maria Leadbeater, secondary breast cancer nurse at Breast Cancer Care, said: "The situation for these women, and men, is very different from when they got their primary breast cancers, because although their symptoms are treatable their cancer is no longer curable.
"They need help to help them through what is a very difficult time.
"But what we have found is that at the time they are diagnosed with the cancer the care is often not there. They are almost like a missed population of people."
She said that as well as the practical care needed, those with breast cancer had a multitude of questions that needed answering such as what treatments were available, whether they should give up work, what benefits they were entitled to and whether they were able to get insurance to travel.
She said she hoped the taskforce would ensure that people were empowered and given the appropriate help.
Sue, who is taking part in the taskforce, said she is determined to fight for her life.
Six months on from diagnosis she is feeling well and determined to enjoy as much time as possible with husband David, children Emma and Jamie and grandchildren Amy and Ben.
But she admits that, despite her positive attitude, there are still times when she feels low and needs to rely heavily on her faith.
"There are times, especially in the middle of the night or when I think about the future and the uncertainty that denotes for me, I do become fearful.
"I deal with this fear by trying to focus on the positives as I do believe it is a very slippery slope down but a hard climb up.
"I am a Christian and my faith is my strength.
"I just think life has allowed me the chance to fight, so I am going to. I thought I can't change the diagnosis, but I can change my responses.
"I can either think 'woe is me', or I can think this has happened and I can't change it so I am going to live and fight with all my muscles and fight it head on.
"The people around me do not want to see me with a long face.
"The cancer does change me, but my prayer is that it will enhance me rather than take things away from me."