Diagnosed 30th Sept 2025. Started chemo first (EC). Don't understand a lot of what I've been told!

Hi, I think I have similar. Stage 3 invasive ductal carcinoma- oestrogen receptive . I have had 3 rounds of EC and had 3 rounds of docetaxol ( 1 more to go ) . Had quite a few  10 lymph nodes removed . I have had a mastectomy first with reconstruction - chemo- radiotherapy- and then immunotherapy. It was a lot to take in and like you I read all the letters as soon as I heard the ping in my phone . I did find Ai reasonably helpful for deciphering the jargon and giving it to me in layman’s terms. It is in my right breast . I think the fact it is contained to the breast area seems to be a big positive and the preventative treatments seem to be a ‘game changer’ from what I hear . Everyone I speak to have slightly different regimes- surgery first / chemo first etc. Was there anything in particular you felt unsure about ? I have a McMillan mentor and she has been great to talk to each week- would highly recommend that xx

Thank you!

I've been trying to avoid googling what the various codes mean, as i dont think that'll be good for my mental health!

I guess I just feel a bit lost right now, and wanted to reach out to people who have a similar type and treatment plan.

What I would say having gone through the mastectomy, chemo and radiotherapy this past year is research research as much as you can. 

I found I got quite a bit of contradictory information/responses. So my bcn was very “it’s a really good cancer” whereas the oncologists were very “it was grade 3, you need the chemo” making out it was terrible because of the grade. The breast surgeon was very “a tiny spot of cancer was found in your sentinel node” not so panicked and the bcn said it the sentinel node did its job in containing the cancer but the oncologist was very “it was starting to spread”. So I guess down to this it doesn’t matter what type it’s the grade. 

Basically your type is Grade 3 HER2 positive. ER is estrogen receptors which yours doesn’t have. I’m not sure what the b numbers are. 

Typical treatment for HER2 positive is treatment first then operation after. Mine was HER2 negative so operation to remove it first then treatment. 

I did Google grade - that's how different the cancer cells look under microscope? So i think 3 is they look very different, but not the worst?

When I got my diagnosis at the breast clinic they told me mine was "fast" (boo), but was a type that responded well to treatment (better!).

Kinda wigged a bit, but when I saw the consultant he said actually "fast" isn't maybe my scale of fast. He said we could look at it in 3 months and it would be the same, as cancer fast is still months and years.

Really hoping he wasn't just blowing smoke!

I thought grade 3 was the worst  the main thing is it is treatable. HER2 positive is quite common. How old are you if you don’t mind me asking? I heard it’s more common in under 50’s. I have a friend who I met in the chemo ward with HER2 positive. 

They said mine was slow growing which is ironic because when you read about grade 3 it says it is fast growing so contradictory again! 

Hi

 I was similarly bamboozled by all the terms and didn’t have a clue about the significance of each. 
I found the MacMillan website very helpful - indeed a lot of the literature I was given in the breast cancer clinic was just print outs from this website. Occasionally I used Wikipedia too but don’t just google. You pick up all sorts of out of date and inaccurate rubbish

Im not an expert so definitely ask your BC nurse about points you’re curious about. 
It boils down to

• what stage you are - how advanced is the cancer in your system
• what grade is the cancer - so it could be a tiny tumour but with a high grade
• what is it responding to. It sounds like yours is HER2 positive but not to the hormones (progesterone or estrogen) 

Your multi disciplinary team looks at all the info coupled with your age and whether you’ve been through the menopause or not and decides on the best course of treatment 

I was stage 1, grade 3, HER2+. So I had a lumpectomy, 12 weeks of Paclitaxel (a type of chemotherapy) 5 days of radiotherapy and I’m just coming to the end of a years worth of Herceptin every 3 weeks. It’s not always wonderful but it was nowhere near as awful as I feared. And now I feel great!

Very best wishes. There’s no such thing as a silly question so do ask if you’re not sure about anything 

I think in the McMillan hand out booklet pack you get given, there is a section explaining all the jargon if you prefer not to Google

And if you do look online - stick to only reputable websites, as I am sure you already have! As there is a whole lot of nonsense out there that doesn’t help at all . McMillan and cancer research are my go to sites x

Turned 47 a couple of weeks ago.

Thank you x