Hello everyone,
I had dcis (calcifications, no lump) in 2017 at 42 years old , er+, pr+, her2-, grade 3, comedo necrosis, treatment was cuadrantectomy, readiation x 25 sessions and tamoxifen for 5 years. 6 months after finishing tamoxifen at 48 they spotted something in my yearly check up near my previous dcis and thought it was necrosis. After doing mammogram, ultrasound and mri they couldn´t make it out, i also have very high density so it´s difficult to see and core vacum biopsy confirmed dcis+invasive. I had mastectomy on the 4th of May, nodes clear, 8mm tumour (removed in biopsy and nothing else found in mastectomy), I also have expander in for reconstruction. I spoke to my surgeon for results and she said no chemo necessary, I just need to speak to my oncologist about medication. I asked about oncotype dx test and she said it was not necessary. It also doesn´t say on my report the stage of cancer. her answer was “it´s small”. I asked if stage 1 and she still wouldn´t call it stage 1 even though invasive. I find this very frustrating. The small tumour was er+, pr+, her2-, grade 2, luminal A, low k167. Did anyone else get refused the oncotype dx test… I´m very nervous as 2 aunts died and didn´t have chemo, early stage but this test didn´t exist then and they died in their early 50s. One aunt it never got to her nodes and she had distant in her bones. If anyone can advise. I´ve also have cousins, grand aunts and grand mother with breast cancer but genetics clear too. Thanks in advance.
Hi @libbyworld ,
I’m not sure I can provide the answers you need, but thought I’d share some information I found out during two recent consultations I had and also website references which may help you understand staging (from the cancer profile details you have shared below I’d say your tumour stage would be [T1 N0 M0] or Stage 1A, which is really good news as the recurrence was caught very early):
cancerresearchuk.org/about-cancer/breast-cancer/stages-grades/tnm-staging#
breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/diagnosis/breast-cancer-stages
If you have your pathology report it will most likely reflect TNM staging in it.
When I had a recent discussion with my oncologist I brought up the topic of staging as mine had changed post op. She went on to say that the term “Stage” is primarily used in America. In the UK (I’m not sure which country you are in?) they tend to use the terms “Early Stage BC”, “Locally Advanced BC”, “Distant BC” etc… when having discussions about treatment with patients as that’s more useful. Either way your’s certainly sounds like it falls under the “Early Stage BC” category.
Regarding the Oncotype test, if you are in the UK & being treated in the NHS, the guidelines on use appear to vary quite a bit across NHS trusts. I’ve shared some information I found out during the final appointment I had with my surgeon here. You haven’t mentioned if you are pre or post menopausal, but I expect that would be one fact along with several others that they use to drive the decision on whether to do an Oncotype test. I would ask your oncologist/surgeon the reason why an Oncotype test isn’t being done for clarity, as you have a Primary Early Stage BC diagnosis and are receiving treatment on that basis. I’m not sure if this is the latest, but it would be worth having a look at the latest NICE guidance before the conversation.
Let us know how you get on. Take care xx