Hello and thanks for posting

I am sorry to hear about your diagnosis and how the tumours haven't reduced as much as everyone had hoped.

Unfortunately not all cancer cells do respond to chemotherapy or reduce in size as expected but it is still good there has been some reduction and the team are now proceeding with the next step of treatment carrying out the mastectomy.

Your team have your best interests at heart and will be aiming to give the best treatment to give the best possible outcome. They will discuss any treatment decisions moving forward after surgery with you so as difficult as it might be try not to over think things for now.

Do talk through any questions or worries you have with your breast care nurse or doctor as they are in the best position to answer these.

You are very welcome to get back in touch if you need to and you are also welcome to give us a call on 0808 800 4040 if you would rather speak to a nurse over the phone. We're here Monday-Friday 9-5.

All the best

Naomi

Thank you for the response. 

I think I keep going through phases of panicing. I'm glad in a way to be having surgery as it's the next step forwards and I will see the surgery team in about 11 days time so will get to ask them about this. 

I have been made aware that if there is any active cancer detected after surgery I will have to have my PICC line put back in and will be on Trastuzumab emtansine (Kadcyla) until around May 2022 which I really don't want but suspect I may be. But i'm basing that off my tumour not shrinking. 

I just wanted to add to this post again in case anyone else came across this or experinced anything similar. 

I'd spoken about been able to feel my tumor and it felt the same size. After surgery it was discovered that the majority of the tumour was actually dead and all that was left were a few single cells. I had assumed that because I could feel the tumour it must all be still the same which it wasn't. I have been told I had very close to a complete response but because there were single cells left I will have more treatment. 

In other news I did have a complete response in my lymph nodes and in my second tumor. 

Thanks for getting back and updating us about your situation

That is really good news about the response being far better than everyone had expected, just goes to show that often a series of different tests are needed to know exactly what is going on.

All the very best to you with the rest of your treatment but do get back in touch any time if you wish.

Take care

Naomi

[@rmscj]‍ 

Hi hope you don't mind but I am wondering how your getting on, I am in a similar situation.

Hi,

Im getting on well. I completed my radiotherapy in December and started Letrozole tablets. I was on Tamoxifen but didn't get on with it. I have the Zoladex injection so I was moved onto Letrozole. 

I'm on another treatment Kadcyla (TDM1) which I will have 12 cycles of. I've just had number 6 so I'm half way now. I was offered this treatment due to there being a few cancer cells left over. It is to prevent recurrence. 
If you have any other questions I'm happy to answer. 
 

The positive news is with Kadcyla it doesn't always cause hair loss and I've now got a big mop of dark hair :)

Hope you are getting on ok. 

Hi,

Thank you for taking the time to reply.

So glad to hear your doing well and smashing the treatments

I am also HER2 +, I started my treatment with 3 cycles of EC chemo then moved onto 12 weekly cycles of Paclitaxol chemo in September on completing this I had surgery, left side mastectomy with immediate Diep Flap reconstruction with right side breast lift, I am 2 weeks post op and doing really well.

I have residual cells and have had my 1st cycle of Kadcyla yesterday ( no side effects to report but early days ) have you had any side effects from Kadcyla?

Take care 

Hi,

I only just saw this message apologies for the delay. I've now had 8/12 cycles of Kadcyla. I got quite a few side effects and have now had my dose reduced twice. Unfortunately I also had my PICC line taken out and gave terrible veins in my hand so it's become a little difficult. 
On the bright side my side effects have reduced a lot and I am getting on OK with treatment. Hope yours is going well.

Hi,

well done on completing 8 cycles

I have had 2 cycles up to now, I have had a break as I am having radiotherapy 12/15, I am due to restart Kadcyla on 8th June and I am so anxious about it as the side effects I have been suffering are a struggle they last about 8 days after infusion I feel as though I have aged 20 years in 2 months.

I had my picc removed before I had my surgery in March so have a cannula on each cycle I got to say I was glad to have it removed to reduce hospital visits and infection oh and so I could soak in a nice bubbly bath

Thank you for replying xx