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Waiting for Oncotype Dx Score and freaking out

27 Nov 2021 13:16

Hi All, 

I'm 38 and was diagnosed Stage 1, Grade 3 Invasive Ductal Carcinoma, with DCIS HER2- ER+ 8 weeks ago

I have since had a lumpectomy Nodes where clear and clear margin.  When I had my Biospy they said it was Grade 2 and I would have only 5 days of Radiotherapy, after Surgery it want to Grade 3, so now they have sent my sample off too America for testing. 

I am actually going out of my mind with worry, I don't know how I will cope If it's a high score, I am worried I will spend my life waiting for re occurrence? I feel it's like knowing the future I just can't cope with the thought of a percentage given to me telling me it's coming back. 

the Chemo doesn't worry me it's this score thing 

Any advice would be great please as I'm struggling to comprehend this. Xxx

Waiting for Oncotype Dx Score and freaking out

28 Nov 2021 00:12 in response to snow-drop

Hi Snow-drop,

yes the onco testing is yet another test where we are left 'waiting' for results. It's never easy. Many cancer patients don't have an onco test of course but oncology teams do it when they consider chemo isn't necessarily warranted and they want to find out the best way forward for you. 

I looked at it as waiting to be absolutely sure of what was going to be best for me. It's a very scientific testing of  your unique breast tissue. A low score (under 25) means chemo isn't going to be beneficial and would be more harmful than helpful. A score over 25 means chemo will help you. So it's a clarification of what will be the most appropriate treatment. I think it's a positive to have access to such testing because whether it's a high score or a low one you do know treatment will be personally built around you and your specific  situation. 

Perhaps  talk your worries through with a BC nurse at your clinic?  They are always so supportive and knowledgable. 

I do hope your results come though quickly. It IS a worrying time of course but it will mean you get the best treatment for YOU. That's a positive whichever way you look at it. 

Recurrence IS an on-going theme for most of us. Just to say I am nearly two years past treatment. Have had two clear mammograms since then. Each one has made me feel that much more 'removed' from cancer. Time helps. As does exercise and eating well. 

I wish you well of course. 
Take care,



Waiting for Oncotype Dx Score and freaking out

28 Nov 2021 21:05 in response to kebb

Thankyou for taking the time to respond to my post. I really appreciate your advice, you have put a positive prospectus on it that has really helped.

I just think the worst of everything 


Waiting for Oncotype Dx Score and freaking out

28 Nov 2021 21:17 in response to snow-drop

Hi Snow drop,

just to say sometimes we all think the worst case scenario. Cancer is such a massive hit. I do know though that we have informed experts to treat us though. Hold onto the news of no lymph node involvement and clear margins. That IS all good news. 

So hoping you hear your results very soon. 
Fingers crossed for a low score. 

Kebbs x x 

Waiting for Oncotype Dx Score and freaking out

29 Nov 2021 12:30 in response to kebb

Hi Kebbs,

Thankyou your right! I think I'm just still coming to terms with it all. Such a scary thing. 

I appreciate your kind words xx

Waiting for Oncotype Dx Score and freaking out

29 Nov 2021 13:21 in response to snow-drop

Hi. Oncotype dx is done for specific cancer type. Her2negative And Oestrogen positive. 
depends on your age what the cut off number should be.

Over aged 50 the numbers are 26-100 get radio. Under 25 get chemo radio. 
Under 50 the number is 20.  
I had my oncotype sent off Sept 29th and it came back within two weeks. 
The team at the hospital then discuss your case in an MDT meeting. And decide what treatment plan offers the best outcome.

my score came back 22.  -in the medium risk for recurrence.

ny cancer has been fully removed -clear margin and clear nodes. So thought I'd dodged the chemo but no.

im 42 years old as was told by my oncologist that they want the number to be lower - ideally under 16 to avoid chemo.

anyways-cutting a long story short Im having four cycles of TC chemo. Had one cycle already and I've had very few side effects. 

Im thinking of it as an insurance policy -any stray cancer cells are gunna get blasted by the chemo. I might feel a little bit ****** and loose my hair but if it helps to live longer then I'm up to the challenge.

onwards and upwards

Efffie x

Waiting for Oncotype Dx Score and freaking out

29 Nov 2021 15:14 in response to Efffie



Thanks for the reply, how do you get your head around the worry of it coming back? I find that more of a worry than the Diagnosis itself 

Thanks Sarah

Waiting for Oncotype Dx Score and freaking out

29 Nov 2021 15:38 in response to snow-drop

Hi again. 
Having chemo doesn't guarantee it won't come back. But it's my best chance. That and having regular check ups and self checking is the best I can do.

If it comes back then I'll cross that bridge when it happens. 

Just looking forward to Easter 2022. When my chemo and radiotherapy will be over.

Efffie x (one down . Three to go ) 



Waiting for Oncotype Dx Score and freaking out

10 Dec 2021 11:09 in response to snow-drop

Any news in your Oncotype ?? 

ive had my second cycle of TC chemo last week and feeling well - wake up each day expecting symptoms and don't have many. (So far so good) 

My hairs fallen out in day 18 so shaved it off. Awaiting my wig arriving but staff said March 2022. Putting in a formal complaint today.

Much love 

Efffie x

Waiting for Oncotype Dx Score and freaking out

10 Dec 2021 12:29 in response to Efffie

Hi hun,

I saw oncology on Wednesday and he said I would be having Chemo due to it being grade three, because I was having Chemo anyway I decided I didn't need too know my score and was pleased I decided that.

I start straight after Christmas 3x FEC and x3 of something beginning with D. Then Radiotherapy. 

Gutted about your Wig that is really awful of them to do that x