My primary was in 2002. I have recently found out that I have secondary cancer after having a massive pleural effusion that contained metastatic breast cancer cells. It is in my bones. I also have a nodule in my liver that showed up on the CT scan which may or may not be tumour. My original tissue was requested so that HER2 testing could be done. This has been reported as being positive. I was under the impression that Herceptin was always given if HER2 was positive but have been told that I may not be given the treatment. After initially being put back on Tamoxifen I am now on Letrozole. I was told today that they want to see what effect that has on the tumour before they consider any other treatment. Has this happened to anyone else?
Hi Murdoc,
I’m sorry to hear of your latest diagnosis but you’ve come to the right place for some good, honest support from the many informed users of this site. I have put for you below the link to one of BCC’s secondary publications you might find helpful. Also each Tuesday evening between 8.30pm and 9.30pm our Live Chat service runs, this is where you can ‘talk’ to others in real time about anything you may be concerned about. The session is hosted by a nurse and a moderator so there’s always someone to talk to. I’ve put you the link below for you to have a look at. I hope this helps.
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc58
breastcancercare.org.uk/community/chat
Take care,
Jo, Moderator
Hi murdoc
Sorry to hear the wretched BC is back, something none of us want to hear.
I have had secondary BC since 2008, primary was in 2003. Initially it was ‘only’ in my bones but earlier this year it also showed up in my liver. My previous treatment has been chemo followed by hormones, Arimidex plus bone strengtheners. Since the liver mets showed up I have been re tested for HER and am now also positive for that, as well as being hormone positive. Unfortunately, due to a heart problem brought on by the earlier chemo, I cannot have Herceptin at the moment. This totally floored me earlier this year when I knew I couldn’t have it but I did read of another lady, with mets, on here who said her oncologist would only be prescribing Herceptin once there was further progression and this had taken a year to happen. It made me realise that although HER positive BC is seen as more aggressive it doesn’t automatically mean it goes through your body like wild fire! Which is what I thought when I knew I couldn’t have Herceptin. I have been on Capecitabine since Feb of this year and it has shrunk my liver tumours by about half and also my bones are showing healing on the new, bone strengthening drug, Denosumab.
In your position however I would ask how effective the change to an AI is to be checked and also whether you will be getting a bone strengthening treatment as well as a hormonal.
Nicky x