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. 

Been to the oncologists, had to chase the bc unit to get another appointment to see the surgeon.. so got a phone call yesterday with a date for my surgery.. which is next Thursday. So pre op tomorrow  and seeing the surgeon.   While I was with the oncologist  I asked the question of, having a bone scan or how do they know if it's in my blood, she replied, your lymph nodes are showing negative with the MRI with dye ans ultra sound so this is telling us it's not in the lymph nodes, if it was in the nodes then it would of spread to other organs and blood. So given this information, after my surgery where I'm having a lumpectomy and 2 x sintinal nodes removed for biopsy.  If this is clear, then no need foe that god awful chemotherapy, which they gave me a 30 page print out of information on the type they woukd give me. Well the risk are that every organ important organ can be affected along with a list of eyes mouth skin . The risk of secondary cancer it can come back in a few years. So my questions for Google were life expectancy, with surgery chemotherapy and radiotherapy and gave all the information about my cancer my age size of the tumour.  It came back 85 - 91 % over the 5 years.. then I did it missing out the chemotherapy, so surgery and if it comes back negative with lymph nodes. Then radiotherapy.  It came back with 91%.. so why put myself through some chemotherapy when actually can kill me and possibly affect my major organs. When the % is higher with out chemotherapy.  Anyone got any views on this.. I am going to ask my surgeon tomorrow for her % on both. 

I just wanted to share my own experience, not to frighten you, but because every cancer behaves differently.

My lymph nodes looked clear on imaging too. I had a risk-reducing mastectomy because I’m BRCA1, and my cancer was actually found incidentally in the tissue that was removed. Further scans then showed it had already spread through the bloodstream to my liver and a small area of bone, despite there being no evidence of lymph node involvement.

I’m certainly not saying this will happen to you – everyone’s cancer is different, and your scans are reassuring. I just wanted to say that this is one of the reasons I personally would want to understand exactly why my team recommends or doesn’t recommend chemotherapy, rather than basing the decision on online statistics alone.

Online survival calculators can be useful for asking questions, but they can only estimate based on the information you enter. They can’t take into account every detail that your oncology team will have, and sometimes they don’t include the benefits of newer treatments.

I think it’s a really good idea to ask your surgeon tomorrow what the estimated benefit of chemotherapy would be for you personally. Ask them to explain the percentage with and without chemotherapy, and what they’re basing that recommendation on. That way you’re making a decision using your own pathology rather than general statistics.

Whatever happens, it’s your decision, and you deserve to understand exactly why any treatment is being recommended before agreeing to it.

I’ll be thinking of you for your pre-op and surgery next week. I hope everything goes smoothly, and I really hope you get reassuring results.

I also don’t want to frighten you. I have metastatic tnbc. I had a 1.8cm grade 3 tnbc tumour found on a routine mammogram in early 2022. I had an WLE and sentinel node biopsy and it wasn’t in my lymph nodes. The pathology report said it had invaded a blood vessel. When I had to make a decision about chemo I was looking at similar predict data, which didn’t exactly sell chemo to me. The oncologist persuaded me to have chemo.

As it was, chemo almost certainly saved my life, but not in the way I expected. I got infected diverticulitis during chemo, was hospitalised and the investigation into that involved a CT scan. That picked up that I secondary spread in my liver. This had probably happened prior to surgery via the vascular invasion. Various things followed but ultimately the cancer in my liver was cleared before it became problematic and I have been in remission ever since. If I hadn’t had the chemo I wouldn’t have known about the spread until my liver started to show symptoms, by which time it would have been way too late. 

I can’t imagine how I would feel if I had turned down chemo and found myself with really advance stage 4 cancer some time later. It was that sense of wanting to know I had done everything I could that took me into chemo in the first place. The chemo wasn’t that bad.

Obviously your own choice what you do. My story isn’t necessarily yours. My oncologist always says tnbc is really tricky. I think she is quite surprised my remission has so far held. 

Thank you for your answers. I have taken this on board. I will have surgery on Thursday  and will be seeing the oncologist again. Mu h appreciated.  X

Thank you for your answers.. and again like Emma you both are going through so much, which i am sorry you are.  I take on board anyone situation and appreciate it. I am having g surgery this Thursday and once healing will ne having another meeting with the oncologist.   I really appreciate your reply. X

All the best for your surgery.