Thank you so  much Ali for your response it really does mean a lot. I think the waiting part is the hardest. Every day of every minute I think about this. I try my best to be prepared for the worst news, then remember I have had the worst news already! Being told you have cancer!! I just don't know how you managed to make that decision to have chemo or to not. I can't make the simplest decisions at the moment!! Just consumed with "cancer" treatment "cancer" treatment  

Coming on here and just being able to off load my fears has helped and lovely people responding, that can relate to this horrendous worrying and fear we have on a daily basis.. my mother in law has bought me a book called the 'cancer whisper'. Am hoping this will destract my thoughts till result day, 24th Feb..

Hi Sam, I'm also waiting for Oncotype DX results. I had surgery on the 19th. I had a Grade 3 tumour (21mm) with clear margins and nodes. This time I find I have no anxiety about awaiting results in the sense I'm not in a hurry for the results to become available. I think this may be because I now want to extend "normal" life as long as possible. The next appointment is going to kick off the treatment plan and I'm obviously not keen on any of it! So I'm going to enjoy this limbo as much as I can even though my life post surgery is still a bit limited. I hope you'll have a  low recurrence score. Good luck! Leah

Hi Sam,

Yes I agree you have already had the worst news, but its still extremely difficult. I used to feel like I was going a bit mad, one minute I'd be thinking like you, the next I would be consumed with worry, then back to feeling more positive, and so on. 

Fear is a terrible emotion, there's little let up when you're in limbo land, waiting on results. I have recently started actively practising mindlefullness, finding it helps me a lot. I wished I'd started it a bit sooner, and I think it may help me to cope with whatever is thrown at me in the future.

How's the book going? 

Hi ali

you may not read this but I have been going through exact same after a disappointing Oncotype score. I don’t sleep or eat as like you reasearching everything. I see my oncologist today first time and I think he will recommend chemo as I’m in the grey area. Yet I read about women with scores considered high and some refuse chemo and are fine. If the cancer prognosis is good like ours, no lymph or vascular involvement it’s a tough decision. Wish I hadn’t had test as was set for radiation and hormones both of which are bad enough! I have to make my decision soon and wondered how you doing and if it worries you or you are happy you didn’t do the chemo which can make us ill in many ways...thanks so much, I’m not a forum person but this has got me crazy with all the research and reading!

hi 

am going through exact same thing! Told no chemo

all clear etc - then results came in. I was 30 score. Recurrence risk of 19pc so 81pc not. Didn’t eat or sleep like you. So disappointed and anxious about it. I wish I’d never had it to be honest. No one else I know has!  Been researching like crazy and it is a grey area even at 30 as that was the old intermediate. 

They said today that 7 out of 100 will benefit and live because of chemo in my position. So 93 don’t need it?!! The stats drive me mad and my doctor couldn’t tell me how much my recurrence risk would reduce by if I have it. I’m 60 and so don’t fancy chemo. One person I’ve been in touch with had score of 34 and fine 7 years later, her coworker had a score of 4 and it came back! It’s not a perfect test but it sure causes a lot of angst for women. And chemo sadly no guarantee. I said yes to it today only through fear. But might change my mind. I’m sure by exercising and eating clean and green it’s a healthier way to go than chemo.  Have you decided yet?! Apologies for bold type it didn’t work unless I used it!!!

Hi Sissy & Sam I really feel for you. I had 18mm e+ her2neg lumpectomy, 1 lymph node in 3 involved. I thought I’d have chemo for sure so the oncotype test was my lifeline. In my case, a score of 18 meant I wasn’t advised to have it. I spent hours looking at the predict nhs graphs and stats. There is nowhere to input the Oncotype score, so I wondered if a low Oncotype score was equivalent to having chemo. Daft really. What does seem to be clear is that all these adjuvant therapies, chemo and the different hormone therapies, are beneficial to only a few women. How likely you are to be one of those few women depends on things like size, stage, lymph node involvement etc. What I liked about the Oncotype test was the fact that this was the only test that looked at the cancer itself rather than assessing the effect the cancer had had on me, if that makes sense. Try not to worry until you have the result. Then all this research you have done will really stand you in good stead to make an informed decision. Let us know how it goes. Xxx

Hi, just picked up this thread, had to jump in. I had clear margins and clear lymph nodes..on lumpectomy....was told radio and hormones.....cancer nurse called to say now it's chemo....shocked isn't the word...so, this oncotype test? Is it something I should ask for? Or is automatically done without me knowing? 

Sorry to butt in on this, but glad I found this thread...xxxx

Hi Marlyn, it is an expensive (about £2k) test where they send a sample of your cancer to California to be analysed. It takes 2 weeks to get results back. I had to sign a consent form to have the test done, so I don’t think they’d have sent it off without checking with you first. There is a good Oncotype website with lots of info. Probably worth asking them about it. I think it is sometimes used with node negative women with clear margins who would normally not have chemo to see if chemo is nevertheless indicated. However the reason they are suggesting chemo now for you could be due to something that came back from pathology after surgery. They should be able to explain if you ask. Best of luck x

Thank you so much for your reply! I appreciate it.

one of my tests changed...it was her2 neg......but changed to pos......so that's maybe the reason why......

xxxxx