HER2 Support Group Forums - View Single Post - To those who have survived 6 or more years at stage IV

Christine MH-UK · 08-22-2006, 01:26 PM

I was recently very troubled by something another patient told me. I was telling her not to give up hope: stage IV her2positive Jane Tomlinson, after all, had been diagnosed as terminally ill nearly six years ago, but because she lucked out and got on the herceptin trial for secondaries, was still alive (although now quite ill) and cycling across the US to raise money for cancer. She's gone all the way from California to Ohio so far.

Well, this patient had told her that she had heard that the original cancer diagnosis was a misdiagnosis, a rumour I have heard, but I always thought it came from really ignorant people, since how could someone be so badly misdiagnosed yet end up on a trial. Astonishingly, the patient said that the person who had told her this was her breast cancer nurse! Now, the nurse did not know Jane Tomlinson personally, but she just assumed that there was no way that someone could live that long with secondaries since she personally didn't know of any other cases, but I know from chatrooms that there are some people who live a long time, even if they do not reach NED. I personally know someone who has declared terminal and managed at least three years on just herceptin and aromatase inhibitors.

Well, this just makes me really feel sick. There Jane Tomlinson giving 110% to raise money for cancer research and bringing hope to people with cancer and ignorant people are cutting her achievement down. OK, maybe she is unusual, but surviving six years is not impossible. I fear, too, that these unfounded rumours are affecting her fundraising. Anyway, I was thinking that if some long-time stage IV survivors wrote into the blog http://janesappeal.com/?m=2006&w=34 that they too had survived a long time, this might help to quiet these damaging rumours that seem to be based on nothing more than idle speculation.

I don't think that she should be told about these rumours, since she has alot to do (get to NYC by early September) and needs alot of encouragement (due to being rather poorly and dog attacks).

A big thank you to anyone who writes to her.

08-22-2006, 01:26 PM	#1
Christine MH-UK Senior Member Join Date: Sep 2005 Posts: 414	To those who have survived 6 or more years at stage IV I was recently very troubled by something another patient told me. I was telling her not to give up hope: stage IV her2positive Jane Tomlinson, after all, had been diagnosed as terminally ill nearly six years ago, but because she lucked out and got on the herceptin trial for secondaries, was still alive (although now quite ill) and cycling across the US to raise money for cancer. She's gone all the way from California to Ohio so far. Well, this patient had told her that she had heard that the original cancer diagnosis was a misdiagnosis, a rumour I have heard, but I always thought it came from really ignorant people, since how could someone be so badly misdiagnosed yet end up on a trial. Astonishingly, the patient said that the person who had told her this was her breast cancer nurse! Now, the nurse did not know Jane Tomlinson personally, but she just assumed that there was no way that someone could live that long with secondaries since she personally didn't know of any other cases, but I know from chatrooms that there are some people who live a long time, even if they do not reach NED. I personally know someone who has declared terminal and managed at least three years on just herceptin and aromatase inhibitors. Well, this just makes me really feel sick. There Jane Tomlinson giving 110% to raise money for cancer research and bringing hope to people with cancer and ignorant people are cutting her achievement down. OK, maybe she is unusual, but surviving six years is not impossible. I fear, too, that these unfounded rumours are affecting her fundraising. Anyway, I was thinking that if some long-time stage IV survivors wrote into the blog http://janesappeal.com/?m=2006&w=34 that they too had survived a long time, this might help to quiet these damaging rumours that seem to be based on nothing more than idle speculation. I don't think that she should be told about these rumours, since she has alot to do (get to NYC by early September) and needs alot of encouragement (due to being rather poorly and dog attacks). A big thank you to anyone who writes to her.