Hi Chris 

I just had the same diagnosis as you in June I had lunpectomy then aux clearance one sentil node positive had aux node all clear , had oncotype it costs £3090 came back very low score no chemo required I was told it would have to be 26 to require chemo came in under 10 

I would have the test to me it's your tumour you will no the details to me it's helped mental health for the rest of my life knowing the score defo do it .

good luck Lara 

Hello and thank you for your email.

I am sorry to hear that you are having breast cancer treatment.

On our website you can see the NHS criteria for using the Oncotype DX test here but I am also copying and pasting it below:

NICE recommend these tests for people with intermediate grade breast cancer with all of the following:

stage 1 or 2 disease (early breast cancer)

no cancer cells in the lymph nodes

oestrogen receptors in their cancer cells (oestrogen receptor positive)

their cancer cells have a small number of HER2 receptors (HER2 negative)   

I am afraid I cannot say if you should have the test done privately. I do think you should be guided by your breast specialist. 

I have looked into if it can also predict the need for radiotherapy and I can see that there is some research looking into this but currently is not used for this purpose in the NHS.

Some people do think about getting a second opinion but having one does not always result in a change in treatment, although it may help to clarify a situation. If you did want one then you will need to ask your current breast specialist or GP to do this for you.  We have information on our website about having a second opinion that might be useful to read click here  to see it.

I see that you have had a response for someone in a similar situation and do doubt that has been helpful. However, you may get more responses if you post in another area of Cancer Chat, you can see these areas to the left of this page. You may also want to look at the information and support that another charity called Breast Cancer Now can provide, you can see their website here

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline 

Hi Lara,

Thank you so much for sharing your experience with me so quickly!

I understand you did have the axillary clearance with no further positive nodes, which is really good. In my case, I've decided not to have further surgery, ie axillary clearance. As I said my NHS oncologist said the Oncotype DX test would not be 'validated' without it.  I still think that you can get a lot of information ont he tumour biolody and an indication of recurrence and the need for chemo.  As you said, it would be peace of mind, which ever way things turn out.  Were you treated privately or on the NHS? May I ask you if you were ER/PR positive HER-2 negative, pre or post menopausal?

Thank you:) Hope you're recovering well and feeling positive!

Cris

Hi Caroline,

Thank you for taking the time to write back to me.

I'm aware of most of the things you mentioned. I understand that the NICE guidlines don't completely apply to me because I had 2/4 positive sentinel lymph nodes. The Oncotype DX test for me would be a way to understand the behaviour of my tumour cells and perhaps make things a little clearer in terms of chemo treatment. It's extremely hard for someone like me, who wants to avoid being overtreated as I'm worried about the long term effects that surgery and chemo may have. I might be completely wrong and naive here...

I agree with the issues that may arise from having a second opinion and agree with what you've said and what is on the website - I also worry as oncologists within an area probably work with each other and the same RT centres and probably hospitals too,  so I do feel a little uneasy about it.

I have been in touch with Breast Cancer Now, but haven't discussed the Oncotype test with them, just the issue of having RT instead of ALND.

Thanks again! Regards, Cris

Hi Chris 
Yes mine was the same ER/Pr positive her2 negative 

I sentil nods positive furious I had aux node now 

I'm perimenapause , on 3rd radiotherapy and start tamoxifen next week dreading it x. 
 

I went private , I strongly advise Oncotype mg mental state is brand new since results I promise you .

I'm here if you need anything further please private message me as I always see those . 
 

good luck Lara 

Hi Lara,

I can really understand why you're unhappy about having the axillary clearance, especially as the nodes were all clear. This is why I think it's lottery as there's no way of checking before surgery. Ultrasound doesn't detect it unless the nodes are really abnormal. My CT and MRI were 'normal' too. I've looked into quite a few studies and that's why I have asked my surgeon about having just RT - there's a trend to . It's not an easy decision as in the back of my mind I sometimes think that I might have other positive nodes, however, I'm hopeful that RT will deal with those. In your case, you can be sure that you didn't have any more cancer in you other axillary nodes - so that one big positive to focus on! 

Chemo was never mentioned as an option, unless I had the axillary clearance (which would've been around this week). However, the oncologist confused my husband and I on the second meeting when he mentioned I could have it (without the Oncotype test....) if I wanted to as well as RT. I chose not to without knowing more about the tumour biology, given that there is evidence that the test can help in the decision. It's soooo complicated!!! The doctors want to throw everything possible at the cancer.

I was on HRT since my mid-thirties, since I had a premature menopause at 33, so I stopped it completely about a month ago. After RT I will be given an aromatase inhibitor (instead of Tamoxifen) as I'm post menopausal. Not looking forward to it...

I'm here too if you want a more private chat:)

Good luck with your last RT sessions. Mine will be toward end of Nov, planning session in a couple of weeks.

Cris x

Chris 

I never wanted chemo same as you , obviously for the risks outweigh the benefits in our cancers my Oncotype would have had to be extremely high for me to accept it or I'm not sure if it was I would have on a just incase note that's not good enough for me to be honest .nhs definitely do the Oncotype my friend is waiting on results as we speak she had to beg but had it in the end .

I would deffo stamp your feet to get what you want it works on a lot of occasions .

good luck message me anytime it's been lovely to sisal to you x 

Was yours left or right breast ? 
 

eny I ask is about the radiotherapy is delivered different on your left .I will explain if yours is left 

love Lara 

Hi Lara,

I spoke to my BC nurse yesterday. She said they have to follow the standard protocol, but I asked her if I could have the test privately, if I decide to go ahead with it (also not sure what I would do with the results). She will ask the oncologist if that's possible. I feel I am being an 'odd' patient as I've been questioning each part of my treatment and I don't want to be one as everybody has been so helpful and lovely since my first surgery... but that's just because I worry about the consequences and morbidities that can come with each one. I'm just really trying to weigh the risks and benefits at each step. It's exhausting.

Is your friend's BC similar to ours? Grade 2 invasive ductal carcinoma , ER/PR 8/8, HER2 negative, Stage? Mine I think is IIA, lobular A.

As to RT, it will be on the left side - breast, axilla and collarbone (supraclavicular fossa). I've been trying to practice 30s breath hold every now and then. My first planning appt is in a couple of weeks, so actual treatment later in the month, 15 sessions.

Warm regards,

Cris x

Chris 

my friend is TNBC 

I'm simular  feel like the odd patient but I don't care it's our bodies our future .

when they say what you would do with sounds odd because if they don't do anything with it after you will no your score the guidelines for the test are 2 to 4 nodes you had 2 so it's not that you fall out of the category., I can't see why they think you are being unreasonable.

yes the breathing I have struggled I'm fit healthy had no problem in planning session but struggled first and second I had to stop again the odd patient so back to planning having radiotherapy my last 3 in a different way which they can do without the breathing which I wasn't told about I had only 5 in my plan had 2 3 left .

so it is exactly the same but you don't have to do deep breath holds .

love Lara x