Tnbc grade 3 a big HELLO

I’m so sorry you’re going through this. I can completely understand why you’re feeling angry, especially after being told it may have been missed two years ago. That must be incredibly difficult to process.

Being referred to an oncologist doesn’t necessarily mean chemotherapy has already been decided. 

Any treatment requires your informed consent. The oncologist should explain what treatment and why they’re recommending it, what the benefits and risks are, and you have the opportunity to ask questions before deciding. The decision is yours.

I’d keep contacting your breast care nurses and ask if someone can explain the MDT outcome while you’re waiting for the oncology appointment. Then at least you can prepare for your appointment.

I hope you get some answers very soon. 

Hi Agistri 

I am sorry you have been diagnosed with a grade 3 tnbc and that it’s so difficult to get to speak to your team. It doesn’t sound like communication from your hospital is great. I am not sure what you can do other than keep leaving messages for the BCN to call you back to explain what’s going on. If you get nowhere with that, have you been given the name of the oncologist? If so you might be able to be able to contact their secretary via the hospital switchboard. I am also really sorry to hear they missed a diagnosis 2 years ago. That must be a real gut wrench and isn’t going to help you have any confidence in them. The one piece of good news is your cancer hasn’t grown a lot in two years, which may mean it’s quite slow growing despite being grade 3.

For TNBC, I understand the recommendation on whether to have surgery or systemic treatment first is determined by the grade of cancer, the size of tumour, and whether there is suspicion of lymph node involvement. Depending on which protocol you are on, you either see an oncologist first, or a breast surgeon first. They are quite separate teams and in my experience both sides stay in their lane, not getting involved in the other’s specialism.

The measurement of just over 2cms on the MRI (I assume the most accurate of the measures) is what has likely tipped you onto the systemic treatment first protocol. Whilst I understand you don’t want chemo, they will want to talk to you about it, because there are advantages to having chemo before rather than after surgery. And they will certainly be recommending you have it either way. They can see how the tumour responds. It may open up more conservative surgery. There is also immunotherapy treatment that is only authorised for neo-adjuvant (before surgery) treatment. I don’t know whether your tumour falls into the category that would qualify for immunotherapy, as that’s something only the biopsy would indicate. It’s possible that is a factor in their thinking. If you do qualify for immunotherapy, it is well worth a discussion, although it has to be given alongside chemo initially. 

When you do see someone, it’s entirely your choice whether to accept a treatment or not. Please do take the time to listen to them. I write as someone with metastatic tnbc.