Oncotype DX results how to make a decision about treatment

  • 25 replies
  • 282 subscribers
  • 1392 views

omcotype DX results I can’t decide which treatment route to accept and am going round in circles. 
Good morning everyone, this is my first post. I was diagnosed with breast cancer in May and so far have had a lumpectomy. I’ve recently had results of my oncotype dx test back which I’m really struggling to interpret despite a long conversation with my oncologist. I’ve been given the choice whether to have chemo or not. My RC score was 26. Distant reoccurrence risk with TAM alone 16% and group average absolute chemotherapy benefit >15%. 
I feel like like a rabbit in the headlights as both the thought of having chemo and the thought of not terrify me, for me both come with huge risks and benefits and I’m strongly considering the non chemo route. I do have a background in nursing which I think on this occasion may not be helping me. 
Has anyone else struggled with this decision and made the no chemo choice I feel like I’m the only one. 
thank you 

  • Hi, I was very lucky that my Oncotype score came back as 9, but had it been borderline like yours I would definitely have had the chemo. But I’m a throw everything at it kind of gal! My oncologist was as surprised as me that it came back low and had already told me what chemo I would have so I guess it was already in my mind I would be having it.

  • Hi has your oncologist done your predict score ? I have gone down the non chemo route. I had grade 2 20mm invasive mass which they removed with clear margins , i also had 16 lymph nodes removed and 2 were positive again fully removed . My oncotype dx score was 9 and when they did the predict score having chemo it made only a 3% difference on the predict score . After a lot of research and talking to the breast care nurses i made the decision to have radiotherapy which i have just finished 5 sessions, i started tamoxifen and i have opted to have my ovaries out as im pre menopausal . I am also a nurse and thought long and hard about my treatment plan. When i made the decision and started on the Tamoxifen , i felt like i had control and felt a lot happier

  • Thank you for replying. I’m usually a risk adverse person but my gut is telling me otherwise. I’m glad that was something you didn’t have to go through and hope you are well. 

  • Thank you so much for sharing, you are the first person Ive come across who did not opt for chemo but I’m guessing they didn’t advise it? I had a grade 2, 23mm invasive mass which was removed with clear margins, no lymph node involvement. My predict score gave a 3% difference with chemo. But my onco type of 26 puts me just over the cut off for non chemo. I believe the cut off is 25. 
    I have also done a fair bit of research and spoken to breast care nurses. I’ve deliberated so much and now time to decide is running out. 
    I hope the treatment you have decided to take is going well. Thank you for making me feel like I’m not the only one. 

    1. The breast care nurses and Dr said it's all about quality of life and the thought of chemo and it's side effects terrified me .My oncologist said that cardio exercise is really important too and I'm some hospitals they now have gyms as it's seen as important as other treatments. I walk about 15k steps a day and prior to radiotherapy this week I was doing at least 5 cardio classes a week . Good luck with your decision . I felt nervous making the decision but once id made it I felt happy with the plan x
  • Sounds like you’re doing everything else that you canThumbsup tone1. I wish there was more research on the impact of non medical interventions on reducing in risk. Good luck with your radiotherapy. I guess the key is being able to live comfortably with our decisions. 

  • I had clear margins and clear nodes. My score was 14, which I'm glad about because I was going to refuse chemo. But because it was low I didn't need to make a decision.

    Good luck x

  • Thank you for sharing, I’m glad you didn’t need to decide x

  • Hello - may I ask what you decided to do about chemo? My onctotype is 27 with a 16% chance of recurrance and chemo would reduce this by about 4%. My doctor says its up to me. I'm having radiation for sure only 5 sessions it reduces local recurrence by 30%. I'm 65. I've spoken to people who had chemo they had no choice and they have consistently said they wouldn't do it in my shoes. My tumour was 1.9 centimeters and my nodes clear. Had a lumpectomy. I will go on Lazatrole. I'm finding the chemo decision very stressful. It wouod be easier with a score of 30. 

  • Hi, I understand your stress around making the decision regarding chemo, the difficulty being there are no absolutes with either way. I think essentially it comes down to what is right for you and what decision you are able to live with. It’s also about what your appetite for risk is, and we are all unique in that. 
    To help me I did a pros and cons list, which I then discussed with a breast care nurse and got a second opinion from another oncologist who explained my score in a way I was better able to understand. I also watched a documentary (if you are in the uk) on BBC iPlayer called ‘Making sense of cancer with Hannah fry’. All this information enabled me to feel I was making an informed choice. I chose not to opt for chemo and feel happy with that. Should  I get I reoccurrence, I will not feel like I made the wrong choice as it could have come back either way.
    It’s a very personal decision and I hope you are able to come to one you can feel happy with. Xx