August 28, 2012 at 11:39 pm #289PanKeymaster
Thanks to members of the forum who first mentioned that a new UK trial of active screening for LFS patients I cam confirm that the SIGNIFY trial is close to being approved in the UK.
Initial details here: [url=http://www.anticancer.org.uk/2012/08/signify-new-uk-lfs-study.html]http://www.anticancer.org.uk/2012/08/signify-new-uk-lfs-study.html[/url]
More details will be posted as and when they become available.March 20, 2013 at 11:11 pm #346Helen HParticipant
Thank you for this information. Thought I would put on the link to the site about this trial. I’m not eligible because I’ve had cancer less than five years ago but they were very helpful when I rang. The link is http://clinicaltrials.gov/show/NCT01737255
Hope this helpsApril 11, 2013 at 2:23 am #347sandra_mayParticipant
I’m so upset about this trial. I have had cancer twice within the last five years (2009 & 2011) so do not fit the criteria. I only found this out today when I received a copy of a letter from Prof Evans in Manchester to my genetics team up in Newcastle. I spent a good few hours crying after I read the letter. I was feeling so relieved that I would have the chance of the regular screening by being a part of this trial as I currently receive no screening whatsoever and I have to say that I am going through a bit of a bad patch at the moment and struggling to cope with having this gene fault. I’m not ill at the moment but I am constantly worried that I am with every ache or pain recently.
I’m still waiting for an appointment from Prof Evans for a clinical full body MRI after seeing him back in November. I’ve been chasing it up and apparently I’m still in the system but thats as much as they can tell me.
I am struggling to understand how they can exclude people for having had a cancer within the last five years. Surely that’s making an unnecessary reduction to an already limited number of possible candidates especially when the terrible nature of the gene fault is that it leaves us all so susceptible to cancer. If anybody could explain this I would greatly appreciate it although I doubt I will ever agree that there is a good reason to exclude me and others like me from this trial.April 11, 2013 at 12:20 pm #348PanKeymaster
Sandra, that’s awful. But despite not being eligible for the trial, surely you can ask to have the same screening off-trial? Doctors can still ask for screening regardless of the trial.
It’s also been agreed that women with a high risk of breast cancer, and that includes women with LFS, should be eligible for Tamoxifen as a preventative measure. Have you asked about that?April 11, 2013 at 1:58 pm #349sandra_mayParticipant
From what the copy of the correspondence says they are looking into whether I can have screening but I can’t help feeling pessimistic. My own genetics team at Newcastle have refused any screening which is why I asked to be referred to Manchester.
My two previous cancers (2009&2011) were both breast and I had a mastectomy each time so not sure where I would stand with the Tamoxifen. I will drop the docs a line and see what they say about it.
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