Hi Ladies although I am part way through my treatment, had mastectomy and a number of glands removed, I also am 3 into 6 FEC. When reading my results I have got a little confused. I have 2 different types of tumour one is grade 3 er- and one grade1 er+. I didn’t realise until the weekend when another letter arrived from hospital and was worded differently that I was triple negative. I’ve tried googling what it meansbut it’s very confusing. Please if any one is in the same boat could you share with me, cos if it’s a high risk of reoccurrence and my survival rate is lower I may change my plan of going back to work ( job stressful) or go part time. Please don’t think I’m being morbid, cos I’m not I just want to make the most of my life 100%, and the more facts I have the easier I can deal with this situation. I shall also talk to my GP and onc as well.
Thanks BD xx
blue dragonfly dont panic, give the helpline a ring 08088006000 or your breast care nurse they can then explain exactly what it means.
basically you wont get given herceptin as thats for her2 pos and you wont get hormone treatment. You still have the same sort of treatment as others get other than the above mentioned.
Sallie.
Hi Blue dragonfly
As hatty has suggested. please feel free to call our helpliners to talk your queries through on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat
Best wishes
Lucy
Hi Blue dragon fly. I’m also triple negative, and scared myself witless by going on the Internet and googling it. Speak to your breast care nurse and oncologist. Mine said that most triple negative cancers respond really well to chemo therapy. I’ve had 4 AC and 4 paclitaxel and 24 rads, now on the REACT trial for two years.
Lou
Yup, don’t google triple negative stuff - most of the info out there is absolute rubbish, especially some of the statistics.
As I understand it, triple negative certainly does tend to respond faster and better to chemotherapy. Plus, it ‘runs out of steam’ after three years and the chances of it coming back after that point are much lower than for the rest of us. So it’s not bad news, as such - just different news. Plus new research is showing there’s new ideas on how to improve the treatments, so various medical trials are happening.
Ann x
A little summary. Some cancers respond and grow in the presence of hormones and other factors. They have identified that some cancers grow in the presence of Oestrogen, Progestogen and a growth hormone called HER2.
If you are triple negative, your cancer is not stimulated to grow the presence of these three, so treatments that suppress these hormones (such as Tamoxifen and aromatase inhibitors for Oestrogen and Herceptin for HER2) would not have any effect on your cancer so you do not receive them.
It is said that triple negative cancers respond particularly well to chemo (as I am positive for all three I haven’t looked it up) but you might want to call the helpline and speak to them about it to see if they can point you at any further information.
Good luck
CM
x
Thanks guys have phoned helpline. And there best advice was to talk to onc as there are so many different factors. Have phoned her secretary and my next app is oct so she is trying to sort something out.
Cheers BD xxx
good that you phoned and hope that you have a little more peace of mind now.