Oncotype DX testing

Seen my surgeon today, was told last week after mastectomy and silicone reconstruction on the 18th, nodes all clear and only need hormone tablets, now this Oncotype DX test has been brought up, 2 weeks for the results and may need chemotherapy! Now in a bit of a tiz, I realise it’s a good test, but chemotherapy is worrying me, I know I may not need it. Am I worrying prematurely? X

Hi Jane,
Well of course you’re entitled to feel anxious about it as the uncertainty when waiting for results is generally worse than the results, whatever it turns out to be.
Whatever the result, it means it will inform the best treatment plan for you.
A lot easier said than done, but If chemo is recommended, then you’ll cross that bridge if you come to it.
ann x

My surgeon said it depends on the size of the tumour, if you are ER +tve and HER -tve, and node negative I think! I know it’s for my benefit in the long run, it’s just when you think active treatment is over, apart from hormone tablet, then the prospect of chemotherapy is thrown into the ring ?I will deal with it if needed, just another BUMP in the road ?xx



I found out on Fri my score is 22.  I think this is relatively high compared to some of the posts that I’ve read and I’m really scared of chemo.  I’ve had a mx, my tumour was grade 2 stage 2, IDC, ER+, nodes are clear.

I’m seeing the onco on Weds and feel she  may suggest chemo. I’m grateful for any advice to prepare me for the appointment and for questions that I should ask.


Thanks xx

Good luck Northerngal with your appointment tomorrow, I’m still waiting my results, hopefully today, as my trust has MDT meetings on a Tuesday.
I’m feeling quite positive I won’t need Chemotherapy, just hope my bubble isn’t bursted ?.Let is know how you go on Jane

Fabulous news northern gal, That sounds a lot better than Chemo.
I rang my nurse today as I haven’t heard , she is checking tomorrow and will ring me, I’ll let you know xx

Hi northern gal I think my onco score was 22 I will check my notes later. I did have chemo last year but was given the option of not having it. They will look at everything type of bc size er + etc and work out what difference it would make to you long term.
The chemo is tough but you do have days between sessions where you feel ok. I had the cold cap which worked well for me. Best of luck with your appointment x

No I haven’t, I’m distraught with worry, over 3 weeks now! I ring every day! The BC. Nurse was very apologetic on Friday, saying they would definitely be back this week and they will ring as soon as they’ve been discussed! Tuesday is MDT day, so I’ll be on the phone , again!, first thing ! It’s all the waiting, then if bad news another 18weeks chemo ?, I was soooooo positive but being dragged down ?Sorry for moaning! Bet you wished you’d ever asked ??xxx

Oh Jane you are allowed to worry on here. If it’s any consolation, I was told 2 weeks for results and had two appointment cancellations at the very last minute. It took 4 weeks to get mine back. Before I’d even sat down the oncologist said “17 no chemo”. I think it was the most worrying wait of all. In fact waiting is probably the worst bit of the whole thing, as once there’s a plan we know what to expect. Sending you a comradely hug xx

Thank you janey2, got the results today and as I expected it is in the ‘grey’ zone . My score is 20, Sewing the Oncologist on 13th Feb, ( my birthday ?) so putting out of my mind, I don’t want chemo, so hopefully I will get to choose as I hope the side effects outweigh the benefit in a fairly low score . Thanks for the support and hugs and understanding xxx

Thank you girls, Northern Gal hope all goes well xx
I do , at the moment, feel quite positive, I really do not want chemo, and hope the Oncologist agrees xx
Big hugs to you Northerngal and Janey2 Thank you x?xx

So glad you got your result. Another step along the journey. Sending hugs.

Hi all , saw the Oncologist on the 13th( my birthday!)he went through all the results and my medical history and a long chat of pros and cons, he even mentioned a chemotherapy drug that is less toxic! All the time I was bracing myself to say “I really do not want chemo “. Then he said I honestly believe Chemotherapy would be of NO benefit to you, phewwwwww such a relief, I could have kissed him ?So Letrazole it is ?I also asked if even though my nodes were clear, could it have spread and as I thought he said yes ?, I’ve had a niggling sometimes debilitating pain in my lower back, from before my diagnosis, I told him he said it is probably not connected but he has to listen to me, and will send me for an MRI, even though he thinks it will be ok, I was so pleased he listened and is taking action, if it only puts my mind at rest that’s half the battle. So onwards and upwards as they say. See how I cope with the ?xx Thanks everyone I’m sure I’ll have other questions as I go along xxx?

Hi Northern Hal, how did you go on with your appointment on Monday? Xx

Hello, my daughter’s onco type results are back with a score of 38. We are petrified, horrified and really do not know how to react.

Does anyone knowns how bad is to have a score of 38 and having chemotherapy (we haven’t discussed with the oncologist yet, but will have an appointment this Thursday).

My daughter had a lobular cancer grade 3, did not reach the lymphs and was all cleaned when she had the mastectomy, but we were hoping for a score of 25 and now this!

Does anyone know how bad a 38 is and bad chemotherapy can be?

She does have other disabilities and we are quite worried about the impact of all this.

Please share with me.

Thank you

Hello Sandraindurham,

I am so sorry to hear about your daughter’s diagnosis. I also saw your other Post asking about Chemo experiences. I wish your daughter all the best with the rest of her treatment. I also wish you all the best,. Your efforts to support her are admirable.

Regarding the Oncotype test. I don’t know if you have seen the information on this site. The link is below. You will also find links to information on chemotherapy.

I think scores and recommendations can vary with different age groups. Your daughter is relatively young and they will try to do the best they can to prevent recurrence. Having a low score is not a guarantee against recurrence. It all can be a game of future chance that we all aim to adapt to and live with.

When your daughter has her appointment on Thursday, perhaps you can help her write down the questions she would like to ask. If you are with her, you could help write down the responses. Some people have even asked permission to record their appointments.

Even if she forgets to ask something, there should always be chances later and she should have a sort of pre chemo orientation type appointment as well. In the end, it is her decision whether to sign the chemo consent forms.

I noticed on the other Post, you were asking specific questions about chemo. I had 6 sessions of Fec T (no Oncotype test for me as triple positive). I also had clear nodes. . I could answer your questions but this may not be meaningful as your daughter may have a different regime. It will all make more sense when your daughtet finds out the specific chemo regime that is being recommended. The Oncologist should provide written information on each treatments with the main side effects listed and hopefully any rare ones so she is fully in the picture. They should also take into account existing conditions and can adapt treatments where possible.

I know it is difficult but it really has to be one step at a time otherwise all the possible short and long term side effects can seem overwhelming and too frightening.

Not everyone’s nails come out and neither is everyone constantly sick. With breast cancer chemo treatment, it is very likely that all head and body hair may be lost at some point. Perhaps your daughter may be interesting in trying the cold cap before shaving her head (although I think you mentioned migraines in a previous post so not sure how this would affect them). Your daughter will be given guidance to what to look out for and when to contact the Chemo helpline or similar.

I don’t think any of us would chose to go through chemo of there was another way. We do get through it and we have different experiences of it along the way.
Best wishes to your daughter, you and your family
Chick ? x