Newly diagnosed and dazed

I would want to know the type of breast cancer e.g.

• Is it ER (oestrogen receptor positive?) 
• Is it PR (progesterone receptor positive?)
• Is it HER2 positive or negative? If HER2 positive, strong (3) or low (1) or middle (2)? 

• If all 3 of the above, then it's Triple Positive
• If none of the above then it's Triple Negative 

Mine is HER2 +++ (very aggressive type, but there are at least monoclonal antibodies these days)

Hormone positive is generally considered the 'best'. There is Luminal A and Luminal B. If they say 'yes' to hormone receptor positive I would ask A or B. A is best, but B is also good compared with HER2 and Triple negative. 

I would also want to know whether they found evidence of the cancer spreading further than your axillary lymph nodes. They did a CT to test that for me, but I don't know if it's always CT or maybe MRI or PET etc. This would make a massive difference, the difference between stage 3 and 4, and also your chances of cure as opposed to treatment. 

Good luck. I was there in June this year, and it's total shit. Knowing helps though, at least you have some clarity what you are up against. Waiting is torture. 

Thanks for getting back to me. The nurse who gave me the biopsy results said I was OR 0 and PR 0, will need to ask about the HER2  as that was not mentioned and also thanks for the info about asking about further than the nodes. I guess that's what the MRI is about. 

It could be, but I had an MRI just so they could learn more about what was in my breast because the affected area is so huge and made of different stuff like invasive cancer parts mixed with DCIS mixed with goodness knows what, calcifications etc etc 

You will find out when you do the test: if it's a breast MRI or full body. I had a body CT plus a bone scan when they were checking further spread. 

Oh, and mine is also Grade 3 like yours. They grow fast don't they at Grade 3. 

But they don't think mine has spread, so even an aggressive HER2 Grade 3 and in multiple lymph nodes doesn't always mean it's spread further.

I will keep my fingers crossed for you. let us know how you get on. I remember being in your situation - only earlier this summer. 

Hi again. So I'm triple negative. You were right about the MRI it was just to check further what was going on with the lump and the nodes.  The recommendation is 6 - 8 cycles of chemo starting in 3 weeks approx but still to see the oncology doctor as its been the breast surgeon I've been dealing with so far. Once that's done then hopefully they can save my breast and only remove 2 or 3 nodes. 

How is your treatment going? Keep in touch and thanks again for helping me through this minefield. 

Hi Mother of cats 

Your situation actually sounds quite positive. My op will be a full mastectomy and full node clearance, so it sounds like your doctors are less concerned about yours in comparison.

I really hope they can save your breast and only remove a couple of nodes - that should leave your arm in a better way from what I have read (when they remove lots of nodes, it's more likely the person will get lymphoedema). 

My treatment is going ok, in general. I had a lot of stress due to forgotten tests, a nasty oncologist who prescribed incorrect medication, they forgot to do my PICC line for months etc etc but things seem to be running more smoothly now. I am going in for cycle 7 tomorrow (I had 4 of EC Chemo, and am now on Palcitaxel and an injection called Phesgo). 

i think some people with triple negative also have EC chemo and Paclitaxel, but there seem to be variations on that so I can't say that is what you will be on. EC chemo apparently did me some good - an improvement was noted in the cancer situation in my breast and nodes. 

Yes, let's keep in touch. Let me know how things go xxx