Is there anyone out there who like me has non hormonal breast cancer?
I was first diagnosed in Dec2005 and had a lumpectomy and 8 lymphnodes removed. Dec 06 I felt a lump in my arm pit that was cancerous so I had a total anx. clearance. Two weeks ago another lump in my breast appeared again cancerous. Now a mastectomy. I am dealing with this well because I am quite proactive in my treatment. However I am finding it difficult to find much information on non-hormonal cancer, which means there are no follow drugs or Herceptin available to me.
Anyone any advice?
By the way folks try reading Coping with Breast Cancer by Terry Priestman page 66 is a real lift. The best book I found to read.
By your posting I presume you are not only non- hormonal but HER2 negative too. In other words Triple neg.
I am triple neg and that accounts for 10-15% of BC cancer. Unfortunately we dont get a look in on the wonder drugs, which makes you feel a bit vulnerable. You don’t say if you had chemo last time.
Triple neg cancer is aggressive, although not sure if more or less aggressive than HER2 pos.
However, there is good news, and that is triple neg responds best to chemo.
hi
I’m tripke negative too, diagnosed july this year and I’m currently undergoing chemo. At first I thought this was a great thing but then I was reading an article in amoena life ,which examined the different traetment options for hormone negative cancers, like you Jules I felt vulnerable and left wondering what else there is for us and so far I haven’t come across anything else.
Thanks for getting back, yes I am triple negative, I didn’t have chemo last time because as they put it ‘They want to save the big guns should I need them later’
The FEC obviously didn’t work and they are not sure whether they will follow up with Chemo this time. I have to wait for them to look at what they take away.
I haven’t heard of amoena life so I will look into that. I have remained a possitive thinker and hope to give this dam cancer a run for its money!
Sorry you have a recurrence and hope the surgery goes OK.
I am triple neg - had mastectomy, recon, chemo (3 x FEC and 3 x Taxotere) and now on rads (have done 8 out of 30). Apparently they used only to give Tax to people with secondaries, but now it’s given when nodes affected - not sure if that’s for all grades - mine was Grade 4. The way I look at it is no more nasty drugs to take, along with the nasty side effects! That said, if they had one for us, I would take it.
Jules, it was good to hear that triple neg responds well to chemo - hope mine has been well and truly zapped.
I get the amoena mags and they are very good - you can even order back issues - www.amoena.com.
There is so much info on what we should eat, drink, exercise etc - I am trying to eat more healthily, cut down on alcohol and planning more exercise now I actually have the energy. And enjoy myself.
Sorry about your recurrance CB102, that’s awful for you.
I am triple neg too. I was told my my BCN that HER2+ cancers are trickier but that Herceptin brings them back down to about the same ‘risk’ wise to triple negative. In other words pre-herceptin, triple negs would have had a better prognosis, but now they are about the same. I was also told trip neg responds very well to chemo. I am on 3xFEC then 3 or 6 Taxotere - Tax is supposed to be the new gold standard and yes Anita I heard that about being previously given to sceondaries, but it seems now it is becoming more common for primaries. Let’s hope it does the business hey?
Take care all
Ali
x
PS-did you know there is a triple negative section on the BCPals forum?
Thank you for your replies they are all really helpful. I have taken a few days to reply because I have been in hospital for the mastectomy I spoke of. I was persistent and got in sooner under a cancellation. I had the op 4 days ago and I feel quite well considering. I will know what the results are for further treatment on 16th October. Your advice will help me to go armed with more questions. I think it is helpful to go briefed up so to speak as they will know we are proactive in our treatment.
Thanks again ladies.