Im really struggling with the waiting - I had a lump I discovered last year and had a upcoming mammogram booked that come back no evidence of cancer just before christmas. So by the time I went to the GP it was Mid Jan- had Ultrasound on 29th - no doctor there that day to do biopsy so had to get new referral and come back another 10 wait. Diagnosised ILC T3 ER+ PR + HER2 Low +1 grade 2 possible 8.3cm ( all information I have had to gather myself) on 11th Feb. Still waiting for a specialist appointment so its been going on for about 5mths. Only help information I have so far is what I have got from my GP and from private PET scan the waiting feels like forever. I got an appointment date today for another 12 days away. I really just need to know what treatment will look like. I like to plan.
HiMillymonster I am sorry to hear about your diagnosis and the recurring hurdles you have encountered to arrive at a diagnosis. This is a tough phase and I’m sending you big virtual hugs as you try to find out what this might mean for you.
It sounds like you’re triple positive and ILC which is the same type I had. My tumour was 3.8 cm in the left breast situated near the nipple.
So much about breast cancer, including triple positive, is variable including treatment as it takes account of a whole range of things, some relate to family history - so what I experienced may not be what is recommended for you. However in case it helps to give an idea my treatment was broken up into 5 phases:
Phase 1: Neo -adjuvant (pre-surgery) chemotherapy /immunotherapy, comprising 6 doses of 4 drugs (“TCHP”). I had a port surgically inserted under the skin in my right arm as these drugs are given intravenously over approximately 4 hours. I would have 3 weeks off between doses.
Phase 2: Surgery: my breast surgeon recommended a lumpectomy and it took place about a month after the 6th dose of TCHP.
Phase 3: Radiotherapy. This started 6 weeks after surgery. I had 15 of radiotherapy doses - every business day for 3 weeks. Phase 4: Phase 4: Immunotherapy and Chemotherapy: 11 doses of a combination called Kadcyla. This extra bit of chemo was needed because the pathology in my lumpectomy showed I still had a few little pieces of the tumour and cancer cells. It was about 14 months from the first dose of chemo to the last (March 2023-May 2024).
Phase 5: hormone therapy (in reality hormone suppression therapy aka endocrine therapy). This commenced during my phase 4 and has continued- I take an Aromatase Inhibitor tablet called Letrozole every day. It is aimed at preventing recurrence of the breast cancer associated with my oestrogen and progesterone positive attributes.
Millymonster I hope you can find some calm during this uncertain time. The not knowing and challenges in waiting took a lot for me to get used to, mainly because I had a role where I wanted to let people know what they might have to change in their expectations of me.
There is a Triple Positive private group which you can ask to join also several good recordings and podcasts about what to expect.
I found this resource useful too, it’s a treatment and decision making guide put out by Breast Cancer Trials in collaboration with BCNA and others.
Wishing you lots of positive energy and do ask questions of your GP or treating oncologist or surgeon.
This network also has so many wise people on it too, so you’ve come to the right place.
