Hi @kirstiekoala,
Firstly, I am very sorry you are going through this, it is a tough time. It is completely understandable that you are feeling numb. Many of us here can relate to that feeling. This group is incredible and the collective knowledge and support is amazing.
I was diagnosed exactly 4 years ago. I had neoadjuvant chemo and both my surgeon and oncologist said that it made no huge difference whether I had chemo before surgery or after. However, given it was Xmas they said we could start chemo immediately. They also said that having chemo first would mop up any rogue cells and it would mean I wasn’t delaying chemo while I recovered from surgery (and if I had an infection post surgery, chemo would be delayed). They may be suggesting neoadjuvant chemo to shrink the tumour for breast conserving surgery or a lumpectomy. This is something to really discuss with your doctor.
I knew from the start I wanted a double mastectomy (DMX) as I had very dense breasts and had many benign cysts over the years - I was 53. Even though I had made my decision, having chemo first really gave me time to work through what I wanted post treatment in terms of reconstruction. I was able to think about what plastic surgeon I wanted etc.
Whether or not to have reconstructive surgery is a very individual choice and there are some excellent resources that can help you with your decision. I had a DMX with immediate reconstruction with implants.
I found the delay in surgery was tricky to navigate as I wanted to ‘know’ the pathology of my BC which, until it is removed, you do not know the exact details. My BC was invasive lobular cancer (ILC) and it is tricky to image and is known to be ‘sneaky’. I did my treatment and 6 months later I had the surgery. The benefit was that the pathology actually shows your cancer’s response to chemo - kind of like a report card - which can help inform doctors whether there is a need for further treatment.
There are some excellent videos on the BCNA site which I think you may find helpful.
I also did genetic testing which was clear. I had family members who had been diagnosed when they were older so the doctors did not think there was a genetic link, but as I have daughters, I wanted to know. This is also an area that is evolving and there are quite a few genes they test in connection with BC.
This is the most challenging time and as you know, the waiting is hard. It is great that your husband is advocating with you and for you. Gather your team and take it one day at a time. You will get through this.
