Checking the Tatas – Part Two!

Read Checking the Tatas – Part One!

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. 🙈

07th June

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!

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Waiting for Surgery…

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!

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Taken before the local anaesthesia wore off!

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.”

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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.

Results

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. 🤞

Next Steps – Checking the Tatas!

In January, I began my next stage of cancer screening. Since I’m at an increased risk of developing lobular breast cancer (thanks to this pesky CDH1 mutation), I have been advised to have both annual mammograms and MRI scans from the age of 30. When I met with my gastro surgeon back in November, he decided to send the referral sooner.

In females with a known CDH1 gene mutation, the risk for developing lobular breast cancer by age 80 has been estimated at 42%. In the general population, lobular breast cancer occurs much less frequently than ductal breast cancer. However, lobular carcinoma is the type of breast cancer that can be associated with CDH1 mutations, and it may be difficult to diagnose (much like hereditary diffuse gastric cancer). The same type of cancer cells, called signet ring cells, can be found in both lobular breast cancer and diffuse gastric cancer.

https://www.nostomachforcancer.org/about/hereditary-diffuse-gastric-cancer/lobular-breast-cancer

Initially, I was sent for a mammogram and ultrasound. I was a little bit apprehensive prior to the appointment. Partly because I had others telling me that the mammogram was painful, but also because I wasn’t looking forward to getting my baps out in front of a total stranger (or three)! 🤦

Anyhow, the mammogram itself wasn’t bad at all – uncomfortable but bearable. It took a little bit of time for the Nurse to position each one into place on the plate (if done incorrectly, the scan picture isn’t good enough and has to be repeated), but the scanning part was over very quickly. I did however, experience some sharp pain in my left breast for some time afterwards, but this was only temporary.

During the ultrasound , they came across a small lump in my left breast (probably the cause of the pain after the mammogram). They explained that these are usually benign and commonly found in women my age. Instead of jumping the gun and doing a biopsy, they referred me for an MRI to get a more detailed scan.

2.5 months later (after I got tired of waiting and decided to email the hospital to chase up my referral), I received a letter from the Radiology department with my appointment date… Friday 13th 😨

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I guess the build up to the appointment was worse than the actual appointment itself. I’d had an MRI many years ago, so I knew what to expect regarding the awfully loud sounds. But my episode of anxiety during my CT scan last year (thanks to claustrophobia and the burning sensation from the contrast) made me nervous. I also had the added stress of having to lay on my stomach for 30 minutes (what if I get bile reflux or my breakfast decides to creep back up?) I was even (irrationally) worried incase a metal object had been accidentally left inside of me during surgery, and would be ripped out during the scan! 🙈 Anxiety is a bitch like that… You get all kinds of irrational thoughts running through your head.

Anyway, the scan itself was fine. My boobs were placed into individual slots and my face into a hole so that I could watch TV – “Poirot” of all things, with Norwegian subtitles. At least it gave me something to focus on! I was even given headphones so that I could listen to the radio, but the sounds of the machine drowned everything out. Instead, I just tried to imagine the weird sounds were some techno bangers and had myself a mini rave!

I received a call 4 days later to inform me that they hadn’t found anything of concern from the MRI, but that they wanted to take some biopsies from the lump that they initially found in January.

On Monday, I went to the hospital for my appointment. Before the procedure, the Doctor explained to me what they were going to do and gave me two shots of local anaesthesia. The first needle stung quite a bit, but it got to work fairly quickly so I didn’t feel the second one, along with the incision they made. Luckily, I didn’t feel the biopsy needle either. I was however, feeling really dizzy and thought I was going to pass out at one point. Not sure if it was caused by anxiety, the local anaesthesia or a combination of the two. After the first biopsy, I looked down and it was a bloodbath! My chest was covered in blood, which only made me feel worse. So for the remainder of my time there, I just made sure to focus on the ceiling. They checked the sample and decided to take a second biopsy just to be sure.

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Luckily, the bruising and pain afterwards was very minimal. I wasn’t sure what to expect as I’d seen others with MASSIVE bruises after their biopsies! So now I play the waiting game, one I’ll never get good at and just hope that all is normal and that this is the last of invasive tests for 2018. 🤞🍀