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My Journey with ALCL

27 Sep 2019 by Krystal Barter
My Journey with ALCL

Breast cancer has been in my family for some time. I tragically lost both my Mother 20 years ago, and identical twin sister a short time later, so, it was no surprise to me that in 2011 I was diagnosed with breast cancer myself.

While genetic tests did not manage to identify a specific gene mutation, we knew deep down that there was a link that couldn’t be ignored, so on the advice of my specialist I opted for a double mastectomy with implant reconstruction as part of my treatment.

Fast forward seven years and it’s just about Christmas time in 2018 when I started to get strange pains and a sense of heaviness around my left breast. I felt somewhat lopsided and even recall saying to my daughter that I felt as though my breast was getting bigger, but then I felt completely crazy for saying it because fake breasts don’t grow.

The pain would come and go, and so with time I just accepted it as my new normal.

Come February I was due for my annual ultrasound, during which the radiologist discovered some fluid sitting behind my left breast. She assured me it was probably nothing, and sent the results to my specialist who also reiterated that whilst it was unlikely to be anything concerning, he had recently learned of a very rare condition called Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) and that he felt compelled to rule it out.

I went to have a biopsy and even during the process, the doctors involved were continuing to convince me that there was nothing to worry about, and that it was probably just a bit of fluid build-up.

How wrong they were.

A few days later I was at work, when I received a call from my breast specialist. Instead of his friendly demeanour I was accustomed to, he was serious and asked if I had time to speak. It was upon hearing his tone that I immediately knew something was wrong and I started to get worried.

He advised me I had been diagnosed with ALCL but could not elaborate on the prognosis, treatment or anything further. I was utterly floored, speechless. What did it mean? What were the implications? What was the treatment?

Perhaps the hardest part of hearing this news was having to tell my daughters. I had already had to tell them once before that I had breast cancer, and now to have yet another diagnosis after having taken what I thought were the necessary precautionary steps to avoid it again, I was back in a frightening place uncertain of what the future would hold.

I was very quickly booked in to see a professor who specialised in breast reconstruction and ALCL, and he immediately took me in to remove my implants and drain away the fluid so he could identify what the prognosis and treatment plan may look like.

Through this surgery they discovered that I had contracted ALCL behind my left breast, and my right side also had developed the early stages.

Here however is where my story turns from a bad one into a story of hope.
I was alive, and I was going to be fine.

Following the draining of fluid, I was clear, cancer free and no further treatment was required.

A few months later, I made the difficult decision to reconstruct with smooth, round implants, which according to my surgeon have next to no risk or recorded cases of associated ALCL. It was an emotional time, but I have full faith in my medical team to provide me with the information to make informed decisions.

Looking back to Christmas, I realise now that the pain and discomfort I was in was more than I should have put up with. As women we are so quick to shut down a worry or put aside a concern due to the fear of being dramatic, or that time simply doesn’t allow us the space to get ourselves to the doctor. Perhaps in my case it’s also a bit of the lack of courage and “I hope it will go away because I am scared” mentality.

I am grateful for the fortuitous timing of my annual ultrasound, otherwise my outcome could have been vastly different.

Being vigilant, seeking answers, being brave and not letting a niggle or a pain continue is the only way women can take control and ensure they are not putting themselves at risk.

Let your doctor think you’re being neurotic, if it means putting your mind at ease.

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