Waiting for Oncotyping - 5cm Invasive lobular breast cancer

I would like to see if there are any other people out there with this type of cancer and who have had their breast tissue sampled through oncotype DX. 


I went to my appointment yesterday to see my consultant to find out the tests after my left sided mastectomy. I was told the ca had not spread to the lymph nodes but it was a rather large cancer. Because of this I will be able to have radiotherapy and tamoxifen for 10 years. However chemotherapy has now been thrown into the mix. This has never been mentioned to be before. However this will be determined by the oncotyping score. 


I have read that the score may come back as low but then there is no guarantee that the cancer won’t come back and even with with high after having chemotherapy there is no guarantee after chemotherapy it will come back. I’m confused why don’t they just say have chemotherapy. I’ve now got to wait another couple of weeks for the result to come back. 



I just came across your post, and was in a very similar situation to you (in fact my first post was on this site asking for advice about the oncotype test!) . I too was diagosed with invasive lobular breast cancer although the tumor was removed with a lumpectomy. It was a successful operation, the lymph nodes were clear apart from a few isolated cells. I was also initially advised radio/ tamoxifen, but then after surgery chemo was suddenly thrown in the mix.


I had the oncotype test, with the view that a score of 15 or below means chemo probably isn’t necessary, and 20 or above it is - mine came back as 18 - smack bang in the middle. This was the hardest part because they then basically handed the decision over to me! They also said if I didn’t choose chemo, I should have 5 years of Zoladex injections on top of the Tamoxifen. The test also said that  if I didn’t have chemo, the chance of this cancer not recurring was 95% - but chemo would add another 3-5% to my chances.


After agonising over this for the best part of 3 weeks, I opted for the chemo - 4 rounds of TC. The thing is, I will never know whether it was the right choice, but it boiled down to this - I was more afraid of regretting not having chemo than I was afraid of regretting having it. 


I got through the first one - it wasn’t easy by any stretch of the imagination but as many have said to me, it’s doable, just a couple of really bad days but also some days where I felt so well I forgot all about it. My second round is on Wednesday.


I hope everything goes as well as possible for you, all I can say is get as much information as you can and trust your gut feelings.


Best wishes, Caroline x