Oncotype DX test results - grey area

HI, my Oncotype DX test results have come back at 22 which is the grey area as I’m aged 40. I have to make a decision as to whether to opt for chemotherapy. I have two young children, one in primary school and the other in nursery. 
I had a lumpectomy, the tumor was 16mm ER positive, HER2 neg and no lymph nodes were effected. 
Has anyone else had to make a similar decision? Was there anything that helped you decide? 
I went to my oncologist thinking I would do everything I could to beat this and would opt for chemo, but now, considering the side effects it’s not so straightforward. The oncologist said if this was at the beginning of the COVID pandemic he would not be advising chemo, and if i suffer from severe side effects then he would pull the plug on the chemo. Feeing really unsure. 

  • Hi there,  and welcome to the forum:)

    Normally chemo isn't considered if the gain is under 3% as it does have side effects.  On Breast Predict  ( https://breast.predict.nhs.uk/tool) your 10 year gain is 2% as an average for your data,  but it is an average.  One of the  things it doesn't look at is LVI (lympho-vascular invasion), which is present in about 25% of cases and very slightly increases the risk of recurrence in some women.  If I had that I'd probably have chemo,  but as my oncologist has said,  there's no way of knowing for sure.  

    Are you having radiation then possibly EC and Paclitaxel? It will take about 5 months to complete the  chemo, then presumably onto 5 or 10 years of tamoxifen? 

    Sorry I've not really answered your question,  but maybe given something to think about. Good luck!

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • I had chemo to shrink mine before surgery so didn't have a choice in the end, but I would have taken it after surgery if it had been that way round and I had been offered. Chemo is really tough but I managed to work throughout (lucky to be able to work from home), only taking a few days off after each chemo session. I am a similar age to you (mid-40s) and wanted the best chance of it not recurring. It is a personal decision though. I was able to shield for the whole time, my husband looked after me and everything at home throughout and I don't have kids. Mine was also ER+, no lymph nodes. It sounds like you have the choice of quitting if you need to. My surgeon said at the beginning that because of my age, they would throw everything at me, and I was grateful for that. Sorry I can't offer a definite yes or no though!

  • Hello. This is such a difficult decision for you to make. I can’t really help you but I can share my journey.. my result was 19, so just a little lower than yours, so it was decided no chemo. I’m 50, my journey has been a long three months post surgery waiting for endless results but finally starting radiotherapy with a boost on Wednesday. There is a lot of research out there on benefits of radiotherapy as an alternative to chemo without the side effects and I have read a lot about how effective radiotherapy is now on early stage cancer.

    My advice is to look carefully at the date the research is done.. so much of it is over 10 years old. Including the predict model. Did your oncologist give you an estimate of benefit if you have chemotherapy, The Oncotype results has a lot of information in the full report I believe. Maybe you could ask to see the full report.

    What ever decision you make, it will be the right one for you and your family. 

  • Thr Predict website  updates every so often as new data comes in.  The figures for now are for women 5/10/15 years out of treatment,  so by definition based on treatment from those times.  When I looked at my gain from chemo  in July 2019 it was 4%, but that had been altered to 3.5% by the  end of the year (annoyingly!) It's also based on tamoxifen,  which isn't quite as effective (or painful!) as the AI drugs like letrozole,  anastrazole or exemestane. It also doesn't include LVI, which is where the cancer travels via the bloodstream without necessarily spreading in the nodes. 

    Every test is not perfect. I'm on something called the Optima trial,  which looks at the need for chrmo in women who are ER+ AND meet certain criteria. Half the women get chemo as usual without a profile of the tumour, and the other half have a Progigna test ( like the oncotypeDX). Researchers profiled thousands of tumors which were stored for many years (yes,  they do that!)  with several different tests and found that after looking at the incidence of recurrenceone in the  women that the Prosigna was most accurate/ clear. None of  them were 100% though.  I ended up with chemo,  and don't know if it was random or high risk! It wasn't nice but the was a lovely group on the chemo thread which really helped:) x

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • I'm 48 and had a low Oncotype score, but as I had evidence of vascular invasion I decided to go ahead with chemo.

    Vascular invasion is not often mentioned,  it is the stage before it moves into your lymph nodes.  It was enough to give more of a lean towards chemo but the decision was mine.

    Its horrible being in that grey area and not having a clear answer.  The best advice I can give is, think of yourself in a year or two time without having chemo.  Will you be getting on with enjoying life or will it be niggling away at you that you didn't have it?  I knew I would be the second and am now 4/6 cycles in and though it's not pleasant I'm still pleased with my decision. 

  • Hello I am 35 and started FEC chemo 15th March.  My onco score was 22 or 23.  I was diagnosed with oestrogen breast cancer in December had surgery January.  I had a lumpectomy and sentinel node biopsy luckily it hadn’t gone to my lymph nodes.  I originally understood I would just need surgery, radiotherapy and Tamoxifen for ten years bringing on the menopause.  I was shocked to hear they recommended chemo as I wasn’t prepared but although I have had side effects such as post chemo vomiting even with anti emetic meds I am glad I am having it. I am using the cold cap to help preserve hair.  I found using Breast Cancer now and Macmillan support service where they get someone to call you who has come out the other side really helped.  Also speaking to Hair Cancer Charity helped.  My sessions are every three weeks and will be a total of six. Have done two so far.  At least you know you can take each step at a time and stop if you want.   Maybe give it a try I was against it at first but at least you know you have tried. Good luck and best wishes for your treatment journey.   

  • Hi I start my chemo soon after having lumpectomy x2 then a month later mastectomy with reconstruction as margins not clear. Could you tell me, is the cold cap working as I’m going for this too. X

  • Hi  thanks for your reply - you’ve definitely given me something to think about . Yes it would be EC, followed by radiotherapy and tamoxifen. I saw my BC nurse yesterday and talked things through which really helped. 

  • Hi  thanks for your message, how did you know there was evidence of vascular invasion? Is that something that is always looked at? 

    how many more cycles do you have left? Is it what you expected? 

  • Well cross fingers it seems to be at the moment.......it was really important to me anyway plus they have no wig service at my hospital due to Covid.  The shedding started two days before my second session.  Shedding is to be expected.  I would recommend the paxman cold cap website and calling the hair cancer charity for advice.  I found reading the paxman leaflet really helpful (even if you don’t use that brand).  It advises you how to care for your hair in between sessions and what products to buy.  Take a strong painkiller just before you start the cold cap. The first 15 mins are hard then it’s fine.  Bring blankets etc. Cold cap is usually placed 30 min before chemo then remains 90 min after.    If you watch Victoria Derbyshire on you tube you can see her having it x x