Just diagnosed with her2 positive and looking for advice about chemo

Hi all im new to this forum having just been diagnosed with her2 positve. It all started after DCIS diagnosis which lead to having a full mastectomy and a couple of lymph nodes removed. An 18mm stage 3 tumour was found in the removed tissue and ive now been told its her2 positive. I was told yesterday that i need to have chemo which scares me and i meet the oncologist for the 1st time tomorrow to discuss it. Im only 44 and think “why me” but i guess we’re all the same. My biggest fear is losing my hair (i know it seems vain). Does anyone have any experience with the same diagnoses as me and have any experience of the chemo involved. My surgeon said it would be once a week every 3 weeks for 6 weeks and then taking Herceptin for 10 years. Are there any questions i should be asking the oncologist tomorrow?  Any help would be gratefully received xx

Hi fionajj, I got my full diagnosis following lumpectomy and SNB on 15th January - 19mmyy stage 2 her2+ Lobular cancer  + LCIS, up until this point I was expecting radiotherapy and Tamoxifen so when I was told about the her2+ and the recommendation of chemo and herceptin I came out of that appointment really low.

I’m 47 and my initital reaction was the same - my hair (even though my, previously, shoulder length curly bob can be the bane of my life), it’s not vain, from the people I have spoken to I think most people think the same not only are we used to having it but not having will make us look like a cancer patient - I’m determined that I’m not going to be ashamed of this (I’ll see in a few days time I think).  My regime which I started on 10th Feb is FEC-T x 6 that’s 3 x FEC and then 3 x Docetaxel (‘T’).  It is given every 3 weeks and on cycle 5 (the second ‘T’) I will start the Herceptin which again is given every 3 weeks for a year (18 cycles) - I think you’ll find its the Tamoxifen you will have for 10 years - thats what I’m having anyway and I will start that after the chemo finishes.

The oncologist will give you a huge amout of information about the proposed treatment inluding side effects, staying healthy and safe and temperature taking - I didn’t have any questions  there was nothing mine didn’t cover - take a pen and paper though - there’s  a lot of information downloaded!!  Before you start you will also have a pre-chemo chat with your nurse and they will go through everything with you and make sure you feel comfortable about what is going to happen.  At that meeting I also got a voucher to cover the cost of a wig which is really nice and looks like my hair when I spend ages straightening it (some NHS trusts give you a voucher towards the cost but mine covers the cost completely).


When you have your chemo they will give you drugs to combat sickness (I never felt sick at all) at the time and to take home and I also got mouthwash in case of a sore mouth (which I didn’t get).  I wasn’t offered a PICC line but didn’t want one anyway so mine was given via a cannula - It doesn’t hurt and afterwards I have had virtually no side effects (so it doesn’t hit everyone the same).  I am pretty fit (run, cycle and swim regularly) and have been drinking at least 3L of water everday whether that has helped I don’t know but I’m going to carry on anyway just in case.

I was asked if I wanted to cold cap and try to save some of my hair but I figured if it would only save some of it and I’d end up covering it up anyway, what was the point of the extra time and hardship. That’s just me though, there are a lot of people on the forum that have cold-capped you can always post a question on the ‘Going through treatment’ section - someone will tell you what its all about.


Day 15 for me and my hair has started to shed but I’m ok(ish) about it now - its only temporary and it will grow back.  I had it cut into a really short pixie cut before I started and now quite like it - think it will be a good style when it starts to grow back but I’ll happily spend 6 months with no hair if it stops the cancer from recurring.


It really will be ok when you get started, the fear is much worse than the reality.


Hugs, Sarah x

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Hi Fionajj
Sorry you have found yourself here. I’m 48 and only a week into diagnosis with surgery booked for Monday and am ER+ but Her2 negative. I know my diagnosis is different but just wanted you to know you’re not alone and when you have your oncologist appointment if you have any questions afterwards just ring your breast care nurse or ask on here. Good luck tomorrow xx