The phone has been ringing non-stop today.
I have so many appointments coming up I don’t know what is going on anymore. Tom has ordered a diary so we can keep a record of everything.
- 1100 – Fertility appointment at Barts
- 1630 – Genetics phone consultation
- 0945 – CT scan at RLH
- 0900 – Oncology appointment at Barts with Melissa
- 1530 – Echo scan at Barts
- 0930 – Bone scan at Barts
Call from the fertility team asking me why my GP was in West London if I live and am being treated in East London. I still had not got that sorted – whoops. They said that if my GP was out of their catchment area then they would not be able to secure funding for my treatment. Time to change GP!
I was really struggling to deal with the apparent change in direction of my treatment pathway so Laura kindly asked Melissa, the consultant oncologist who would be looking after me, to call me and explain why they were recommending chemotherapy before surgery. She gave an explanation over the phone but also said that she would go into much more detail on Monday when we met at the clinic.
Melissa explained that the tumour seems localised from the scans. This can only be confirmed after more scans and doing a biopsy of the lymph nodes surrounding the tumor, which will be done during surgery. We know that the tumor is positive for oestrogen and HER2 receptors. The HER2 receptor is a growth factor receptor seen in 15-20% of breast tumours and it allows the cells to grow through that pathway. These tumours are more aggressive but they have excellent targeted drugs including herceptin.
Tumours with HER2 have a higher risk of recurrence and need chemotherapy – shit. This means that I have a high chance of recurrence. One way to bring the possibility of recurrence right down is to have a double mastectomy (complete removal of both breasts). I always knew my boobs were too good to last me a lifetime. That decision is something I will have to deal with another day.
Due to the tumour size being over 2cm (24 x 21 x 22mm to be exact!) I will have two types of drugs. Herceptin and a Trastuzamab. Herceptin is a targeted drug that acts by binding to the receptor and inhibiting that growth pathway. It sounds like it is not a chemotherapy drug, but for best results the herceptin must be given alongside chemotherapy.
They are only licensed to be given together before surgery. If I choose, as it is apparently still my choice, to have surgery straight away, then they are only allowed to give me one drug post-surgery. This is not being recommended as it has been proven that this has worse outcomes.
Melissa said that chemotherapy before surgery was also important to assess the response I have to the drugs. In 70% of patients there is almost a complete response to chemotherapy with no tumour left in the tissue! Fingers crossed I am in that 70%. If any part of the tumour is still present after surgery then it will allow the oncologists to tailor treatment as they will know if I responded well to the drugs they have already given me or if I need to try new ones.
Melissa said chemotherapy would last for 6 months.
6 months from today is 2nd January 2021.
This means that the big plans Tom and I had to move to Australia to work have been rudely interrupted. Sorry Tom. Our backup plan if we didn’t make it to Australia was to do a ski season, but I guess I will be lined up for surgery in the New Year. Maybe we can fit in an extended skiing holiday towards the end of the season? All are welcome to join!
Masses of information today! I had felt as though I was getting a handle on things with all of the appointments coming through. But after hearing Melissa explain the reasons why they wanted to have me go through six months of chemotherapy before surgery, I felt totally out of control again. And angry. Really angry. I wanted a punch-bag or something to kick, really hard.
Instead I had to resort to going for a run.