Triple positive - is chemo necessary?

Thanks weemaw, I'm slowly coming around to the idea that it's in my best interest to have chemo :(.  As with all of this, it takes time to sink in and accept what's happening  when you just want to close your eyes and ears and pretend it's not real. 

Good to hear you're through to the other side (and with hair!!).  Good luck with your continuing treatment.

Lee x

Hi Genny1312

Sorry somehow the reply I wrote earlier hasn't appeared.  

Thanks for your positivity and support.   I think the test you refer to may be an Oncotype DX which is only available if you're HER2-? Im not sure I'd opt for chemo for an extra 3% because I have all sorts of other health issues but well done for making what was probably the hardest decision of your life.  What I'm learning is that no two situations are the same but if I have to have chemo I now accept it has to be.  

I hope things continue to go well for you and your last session will soon be over.  Theres's light at the end of the tunnel :)

Good luck

Lee x

Hi Leen

just before I switch the light off thought I'd do a quick reply. The Oncotype is the test that is not available for everyone so yes you may be right it may be for HER+ I don't know,but my ONC said it was not worth me paying £2500!! To have it as he still felt more in favour of me having the chemo as 1 node affected and the cell division was a bit higher than desirable. I think had I said no he would have accepted that but me(also being a nurse and fearing the worst !!!) made the decision to go for it and I am really pleased that I did.

It is much harder when you are given the choice you just really want them to make the decision but I figured this was my best shot and may as well get it all covered at this stage.

good luck with the next few weeks but once they are over with and you have your plan honestly it will get easier.

Big Hug Genny

Just to clarify, the Oncotype DX test is for HER negative patients.  As Herceptin is licensed for use with chemo ONLY, there is no point doing the test, as chemo is essential to have with it.  So HER negative patients in areas where this is now rolled out might have the option to be tested and in the event that it is high risk, they will received chemo, if not, they will not benefit from chemo so will just proceed with hormone inhibitors if appropriate.

I recently read the article you quoted and am awaiting confirmation of A Fish/NEU test to tell me if I am HER2 positive. Did you end up having chemo? I am terrified of it and also of Herception. And of tamoxifen. I hope you're still around on this site.

Hi there

If you are triple negative you won't be offered Herceptin or Tamoxifen , these are for HER2+ and ER+ respectively , although I do believe some post-menopausal women are being offered the post-menopausal version , called AI inhibitors , for HER2+ breast cancer. 

I am not sure how far you are at the moment with your diagnosis , but I am currently on Herceptin (waiting for the injection as we speak) after having 12 lots of chemotherapy, as I am HER2+. I am also ER+ so am also on Tamoxifen. 

I know the thought of all these drugs is horrifying , but the reality tends not to be. I saw my oncologist yesterday and the Tamoxifen is doing its job and my oestrogen is almost zero. I do however have flushes and have not slept a full night for months due to hot sweats in bed, and hopefully will be taking something else soon to sort this out. 

BUT I am still alive and I would rather be where I am than refusing treatment, but we all have a choice at the end of the day and you do not have to have the treatment they offer , some people don't and I completely respect that. 

Dont be panicked by the thought of the treatments , just take one step at a time.

best wishes

Jo x

I'm not triple negative - I responded to a posting that was about being triple positive but apparently that posting was in the wrong group.  

I'm waiting to hear if I am indeed triple positive like you.  I'm highly ER+ with a  K1-67 of 25% and an equivocal IHC test.  My FISH/NEU test has not come back yet and I"m dreading the results.  I haven't had surgery yet.  My tumor is 1.4 centimeters, grade 2.

Sorry I read it wrong ! Please don't panic about the results , easy to say but I was diagnosed 11 months ago with a 1.8 cm tumour , grade 1 stage 1 which once I had surgery became 2.1 cm and grade 2 stage 2. They also uncovered extensive grade 3 DCIS which was about to become invasive, so I ended up having a mastectomy and implant reconstruction after my chemo. 

if you just take one step at a time , the not knowing and waiting for results is the most nerve wracking part , and nothing anyone says will make that bit easier - but the treatment is all do able andI am so thankful now that I am still alive , when you have breast cancer you are not normally ill, so getting your head around the fact that you are going to have treatment which will make you feel worse in the short term is mind boggling , along with all the medical terminology and decisions we have to make fairly quickly. 

This site is great for getting information , reassurance and seeing how other people go on with their breast cancer , so just post a discussion and someone will be along to answer your query , no matter how big or small it is.

Jo xx

I found out today that it's Her2 positive. I'm devastated. I'm 65 and I thought I would have some more good years.

Hi Ranorton and welcome

I felt just the same when I found out- it took a while to sink in that chemo would definitely be on the cards, that was the worst bit, otherwise I could've got away with lumpectomy and radiotherapy...But, please don't despair, it seems to have been caught early and the treatment is very effective. My tumour was small but already in lymph node...I turned 64 just before chemo started and have every intention of many more good years.

Have now had 2 chemo and come through it ok, yes you will feel the side effects- for me it was like flu/ pregnancy sickness, tiredness, buT that wore off and by day 9/10 things got better...

You will be surprised how quickly you come to terms with it, just be gentle on yourself, you've had a huge shock, and everyone on here can relate and will help you through...

Wishing you all the very best xxx