Chemo yes or no

Hi 

I have had breast cancer removed 3 weeks ago and today went to see the oncologist they have offered me chemo as I am on the border line percentage to get it back again, because it is a low percentage I'm not sure if I should have the chemo or not,

Any advice would be much appreciated.

Lyn

  • I had lumpectomy, 18mm, E+, HER2 negative, stage 2, 3 nodes removed, only 1 showed cancer. My oncologist recommended Oncotype DX test to assess whether chemo was indicated. This test is xpensive, but assesses the genes of the cancer to give you a score of how active it is. A score between 1 and 18 out of 100 means low active cancer and low likelihood of spread. My score was 13 so I am currently starting week 3 of radiotherapy. No chemo, and I am happy with that decision. The Oncotype DX website has links to many papers describing how the test has been validated.  

    This test is available on the NHS for certain node negative patients I believe. It is expensive at about £2000 to £3000 per test, it takes 2 weeks to get the result as a sample of the cancer has to be sent to California. It might be worth discussing this with your oncologist as 2 nodes out of 36 removed seems very few, but ultimately it is your decision. If you can afford it, you could pay to have this test done. If the results comes out high, over 50 I think, you will have confidence that the chemo is really making a difference.

     

    good luck with a difficult choice.

  • Hi my cancer is mostly the same as yours and my onco result is 16 can I ask how old you are please im nearly 46 and see oncologist on Tuesday and terrified they will push for chemo x

  • Hi there,

    So sorry to hear that you are going through this. I was 60 when I had the Oncotype DX test. I had one lymph node out of the three sentinel nodes that they removed with cancer in it, so without the Oncotype DX test, I would have been offered chemo. From memory, the Oncotype test was originally validated with lymph node negative women with the aim of seeing whether despite their clear lymph nodes, they actually needed chemo. If you are in that category, they are unlikely to recommend chemo with a score so much lower than 25. For women like me, with lymph node involvement, they did a retrospective study (not sure the proper name) analysing samples from lymph node positive women to see if the same scores held true. They did. 
     

    I recommend reading the Tailor-X study. It is set out very clearly and will help explain the scores and give you some insight into what you may be discussing with your oncologist. Your medical team are experts, and will advise you well. www.oncotypeiq.com/.../TAILORx
     

    best of luck x

  • Fab thanks for replying I had one positive node out of 8 so borderline foe chemo thsts why the test was done will follow the link thanks xx

  • No problem, :)

    when I reread my original post from November 2018, I think I was still in a bit of a state, having just had surgery etc. I'm fairly sure my score was 18 not 13, and chemo is not indicated if the score is under 25. So my score was 2 higher than yours.
     

    I don't know where my head was. But I want to reassure you that you will get through it. I'm back to normal now, 2 1/2 years on. I feel fortunate that it was caught early enough.

     

    take care

    x

  • Hey, 

    I was lucky, got my Oncotype result today and it was a 6. If you look at the info for the odx test they usually say no chemo if you're premenopausal and the score is under 20... the side effects outweigh the benefit of the chemo.  Have a wee look on line and ask your cancer care nurse to send you out the oncotype information booklet.

    BUT... if they do offer you chemo, then they feel they have a reason to... at the end of the day they know what they're doing, that's the way I looked at it.

    Keep is posted x

  • Ahhh that gives me hope thank you xx

  • I will request that today thank you so much xx

  • Hi all, Just wanted to pop on this thread with a helpful link. We always recommend using UK NHS or Charity sites such as this one when looking for information. The best source for reading up on the Oncotype test is The Breast Cancer Now website here: breastcancernow.org/.../oncotype-dx

    I would also suggest contacting their helpline on 0808 800 6000 if you have further questions and of course you are always welcome to call our nurses at CRUK to talk things through on 0808 800 4040

    Best of luck everyone

    Sarah

  • Hi tillymini

    I had my oncotype results back last week. My score was 18. Grade 3. Hormone +. HER2 -  No trace in x3 lymph nodes that were removed. 

    Oncologist has advised against chemo. However... I'm having a tough time making a decision. One one shoulder I have the science and experts. On the other shoulder I have my anxiety of dealing with it coming back and me not having had chemo! Normally I'm pretty good taking advice and guidance from the experts but on this occasion I'm really struggling :((

     

    Hope you get the outcome you want. 
     

    Love Sarah xx