Before leaving the hospital after the biopsy was taken, I was told that I would receive the results within 1-2 weeks. On the 18th May, I was informed that the small lesion was a fibroadenoma (as they had suspected), but that there were ALH cells present also (atypical lobular hyperplasia). I was therefore referred to a surgeon to discuss next steps.
On the 29th May, Bjørnar and I met with a breast surgeon. He explained that because of my increased risk of developing lobular breast cancer, combined with the finding of atypical cells, they wanted to remove the fibroadenoma along with some of the surrounding tissue. He explained the procedure to me and told me that it would be done using local anaesthesia. He also set me up for the procedure the following week.
A couple of days later, I received a phone call from the hospital asking if they could use a new method during the procedure. The difference would be that they would use a small piece of steed called a “Magseed” instead of a thin wire, to mark the lesion for the surgeon. I did a little bit of research and confirmed that this was ok to use. They said the only difference was that there would be more people in the room since it was a new method. 🙈
The first thing they needed to do was to implant the Magseed into the lesion. Since it wasn’t palpable, the Doctor used ultrasound to find the lump. Before making the incision, they used local anaesthesia and then implanted the Magseed. Luckily, I didn’t feel a thing!
After waiting some time, I was called into the operating room and was prepped for surgery. Since they were going to use an electrical knife, they attached an earthing cable to my arm. Then, using a metal detector-type device, they located the Magseed, but explained that the lesion was very deep and close to the muscle. Usually, they like to make the incision around the areola for cosmetic purposes, but explained that this would be difficult for them due to its location. Therefore, the incision would need to be further up. I said that was fine (hell, I have a large scar on my abdomen anyway, one more isn’t going to bother me). Then, they put a sheet in front of me so that I would be unable to see the procedure taking place.
Early on, I began to feel extremely dizzy and shaky. The nurse felt my head and said that I was quite warm, so they tipped the table backwards slightly, and placed a cold, damp flannel on my forehead. On a few occasions, they had to administer more local anaesthesia because I started to feel some pain – this happened as they cut deeper. Throughout, it was strange seeing smoke and smelling burning flesh, but I tried not to think about it too much!
Overall, the procedure took around an hour. Before leaving the room, I noticed a specimen jar on the table that contained the lesion. It was the size of a grape!
Since I don’t know much about atypical lobular hyperplasia, I reached out to No Stomach For Cancer, to ask if there was a connection to the CDH1 mutation. They forwarded my question to a member of their Scientific Advisory Council for insight, and below is their response:
“Lobular hyperplasia has a link to Lobular Breast Cancer and CDH1. Women with CDH1 pathogenic variants have ~40 % cumulative risk of developing LBC by the age of 80. In summary lobular hyperplasia is the intermediate lesion in the progression from a normal breast lobule and an invasive lobular carcinoma. Please see below a figure demonstrating the proposed progression of Lobular tumours.”
Of course, hearing this made me feel quite uneasy. But knowing that I will be having annual ultrasounds, mammograms and MRI scans due to having the CDH1 mutation, helps to make me feel more at ease.
On the 4th July, I received a phone call from the surgeon, informing me that the tissue was benign. This was a HUGE relief for me as the waiting period was the hardest… I’m just glad knowing that I will be monitored annually to keep an eye on things, and hope that the ALH cells don’t progress to anything more in years to come. 🤞