Triple negative
Triple negative I only found out yesterday (5th Dec) I’m HER negative, so am hoping JaneRA from the old site will be around to let me join her ‘triple negative’ group. Hoping it’s still going strong Jane.
Looking forward to reading everyone’s posts and maybe being of help to people now my treatment journey is over (so far so good)
Hi libra61 -Hi there
I’m JaneRA from the old forums. Welcome. I have an e-mail contact list of about 20 women who are triple negative. Unfortunately the new site doesn’t allow private e-mail contact so you can’t contact me direct. Perhaps you’d like to contact the BCC moderators about this. I am happy for them to pass my e-mail contact details on to you.
Yesterday I was at a research conference organised by Breakthrough Breast Cancer and spoke to a researcher who has just made a grant application for a clinical trial involving triple negative breast cancers. I will be contacting him for more information.
Treatment options for triple negative breast cancer are more limited than for homone receptor and her2 cancers. Statisticaly chemo is more effective than for er+ and pr+ cancers. Statistically recurrence is more likely in eraly years following diagnosis but by 10 years is the about the same as for er+ and pr+ cancers.
Her2- cancers are less aggressive than her2+ ones but the availability of herceptin for her2+ may change this.
Being triple negative in itself isn’t better or worse than being er+ and pr+. Prognosis depends on many fcators and crucial ones for any type of breast cancer are the siize of the original tunour, the grade and number of lymph nodes involved.
I know loads more information: what a pity I can’t contact you direct.
very best wishes
Jane
thanks Jane Thanks for your prompt reply.
If I had known I would have kept a note of your e-mail address from the old site, will definitely send an e-mail to the moderators.
Shame about the timing, but at least I know where I stand now. I was relieved when I found out I didn’t have to take tamoxifen, but that was before I realised the implications. I was ambivalent about the HER2 test; being more informed, I was aware of the pitfalls of either diagnosis. My onc said it was ‘good news’ though.
I will keep logging in for any more updates you might have.
Thanks again Jane from Lindsay
Time to get on with getting back to some semblance of normal now
Hi Lindsey There was an interesting discussion on an American website recently about er- and pr- breast cancers.
You can find it on the website breastcancerdotorg and then search for the Ask the Expert Conference.
I’m not particularly into diet things but there is some recent research evidence that a low fat diet helps prevent recurrence in er- and pr- women.
80% of triple negative cancers are basal type which apparently means that the cells have lost the expression of a binding protein called CBP and are unable to kill the cancerous cells as they form.
Hope you get my e-mail address! I can then send you details of the article about basal type breast cancer
Best wishes
Jane
pr- Hi
I know I am HR- and HER- but I’m not sure what PR- is. Can someone please enlighten me.
Thanks
Toddy
Sorry meant er- and not HR-
er- this means cancer that has been tested to see if it grows in the presence of the hormone oestrogen where the test has come out negative. That is, anyone with er- cancer does not have the kind of cancer which can be slowed down in growth by somehow stopping the oestrogen in the body from causing it to grow. Er- cancers tend to be more aggressive and affect younger women although this is a general rule and doesn’t always apply.
If you have oestrogen positive cancer i.e. er+ cancer the range of treatments includes anti hormone therapies. One of these is the well known drug tamoxifen - this is known as a SERM which means it selectively moderates the action of oestrogen in the body.
Pr- means the cancer doesn’t grow in response to progesterone, another hormone in the body. Tamoxifen is sometimes effective for pr+ tumours as well as er+ ones.
Mole
er- more or less aggressive? Until recently I had thought that er- and pr- cancers are more aggressive than the er+ pr+ ones. I think the reality is a bit more complex.
According to recent stuff I’ve read er- and pr- cancers are more likely to recur in the first 5 years than the er- pr- ones. After 5 years the rate of recurrence of er- and pr- slows down so later recurrences become more common with the + cancers. By about 10 years after diagnosis the numbers are about the same.
I imagine the difference in the early years is that tamoxifen etc not suitable for negative tunours. And so it seems to me that tamoxifen etc delays recurrence when there’s going to be one rather than preventing.
I want a huge breakthrough to find a drug to slow down recurrence rates in er- and pr- tumours…that would be a start.
I think we all have to bear in mind that lots of factors contribute to recurrence rates. Having lymph nodes with cancer is still more serious than not irrespective of er and pr status.
Another interesting thing I’v leraned recently is that basal type breast cancers which make up 80% of triple negative breast cancers are commoner in Afro-Caribbean women than in white women.
Jane
Punctuation still funny In my last post what I mean is that er and pr negative cancers are more likely to recur in the first 5 years than er and pr positive ones.
Jane
Ask the Expert Thank you (again!) Jane for letting me know about the informative material on this website.
I hadn’t realised we were such a minority group - seems the more you find out, the more there is to find out!
Like you, I don’t believe diet has THAT much influence. I did not fit any of the ‘tick’ boxes for breast cancer risk at that fateful first hospital visit and wasn’t even concerned, thinking I would just have to have a cyst drained (and I’m a health professional). What a steep learning curve I have been on this past year.
It’s 6 weeks now since all my treatment finished and I’m hoping to be back at work in New Year, dramatically reducing my ‘surfing’ time. I’m feeling so much better in myself now the last bits of CMF seem to be draining out of my system.
No answer from the moderator, so can’t contact you personally.
Best wishes from your 21st triple negative member,
Lindsay