Killer Tits – My Boobs are Trying to Kill Me

Courtney Robinson BIA ALCL fighter

This is a story about boobs. Fake ones. Cancerous ones. My ones. This is the story of how my breast implants gave me cancer. And how I’m fighting back.

In December 2021, two days before New Year’s Eve, I was diagnosed with Stage 3 BIA ALCL – Breast Implant Associated Anaplastic Large Cell Lymphoma. It’s a mouthful, but it basically means a super-rare form of Non Hodgkin’s Lymphoma from my textured breast implants. 

BIA ALCL is so rare that throughout the entire 4 months preceding, during every test under the sun, my surgeon repeatedly told me I wouldn’t have it. It’s not possible. It’s so rare. He’s never had a case before. He doesn’t know of any of his colleagues who have had a case.

Guess what. I’m the first. First for my plastic surgeon, first for my oncologist. But then, I’ve always been the outlier. The one who did things a bit differently. The one who didn’t go with the pack. It’s the Aquarius in me 😉

FROM PULL UPS TO BREAST LUMPS

My story started innocuously. I was intent to achieve unassisted pull ups last year, after severe nerve damage in my spine in 2012 from a disc rupture. 

So I was pulling, push ups, lat pull downs, all the things, and I noticed pain in my armpit on Friday night. Weird, since I hadn’t trained arms since Tuesday, but whatever.

By Sunday I felt a lump in my breast. With my heart in my throat I made an online appointment for a mammogram and an appointment for my GP the next morning.

Cue several months of CT scans, ultrasounds, MRIs, PET scans, biopsies and fine needle aspirations. I felt like a walking pin cushion, but still couldn’t get a diagnosis.

My surgeon discussed BIA ALCL with me, but assured me I wouldn’t have it and we were doing all these tests to exclude it. Until finally, the tests proved positive after surgical removal of my implants and lymph nodes.

WHAT IS BIA ALCL?

  • BIA ALCL is not breast cancer, even though it occurs in the breast.
  • BIA ALCL is a rare form of Non-Hodgkin’s Lymphoma (NHL). It’s a cancer of the immune system.
  • When detected early, BIA ALCL can be completed cured through surgery alone – removing both breast implants (even if only one side is affected), plus all scar tissue. It’s called an en bloc capsulectomy and is an intricate surgery requiring removal of the implant and capsule in one piece. Tricky stuff. 
  • In Stage 1 cases, where surgery is successful, patients are cured in 90-95% of cases.
  • In Stage 3 and 4, where the cancer has spread to other areas of the body, prognosis is not so great. Some reports cite 70% cure rates, some cite around 60%.
  • BIA ALCL was only declared a new disease entity by the World Health Organization in 2016 – research, treatment and recovery is still in the early learning stages.
  • BIA ALCL is only associated with textured implants, not smooth. Although there are some cases of women who previously had textured implants, replaced with smooth, and got diagnosed with BIA ALCL.
  • BIA ALCL is a bitch of a thing. It creates killer tits. But not the kind I was expecting back in 2014 when I traded my post-breastfeeding, post-weight loss boobs for a plastic fantastic rack. I wanted cleavage. I got cancer. Go figure.

MY SYMPTOMS OF BIA ALCL

BIA ALCL often presents as a swelling in the affected breast. The fluid surrounding the implant (seroma) increases, and often women end up with one boob significantly bigger than the other (like, a couple of cup sizes bigger). WHAT?

For me, the presentation was not as obvious. I had a mixed-bag of symptoms, which I later found out were pretty textbook for lymphoma:

  • Itching in the affected boob for weeks before anything else presented. Like pregnancy-growing-boobs itching which kept me awake at night but was generalised, not a particular spot like a mozzy bite itch.
  • Pain in my armpit which progressed to the side of my boob
  • Lump in my boob – I later found out this was a thickening of my capsule and a tumour in my lymph node.
  • Crazy, relentless itching. Particularly the palms of my hands and blades of my feet. Never any rash on my feet or hands, but itchy red bumpy rash on my lower back, inner forearms and thighs.

When I described my symptoms to my plastic surgeon – implant dropped, lump, pain, rash, itching – he dismissed it. Told me that together, they do not represent a diagnosis and that we’d further investigate the lump, but the other symptoms could be coincidental. Which is true. But they turned out to be textbook lymphoma.

Courtney Robinson Family Photo

Family photo shoot to celebrate our 5-year vow renewal before my surgery in December. Only Todd and I knew what we were fighting at that stage. I was terrified this might be one of the last family portraits my kids would have with me.

CANCER FOR CHRISTMAS

I had surgery on 10 December 2021. A full en bloc capsulectomy and lymph node removal. My implants were replaced (that’s a whole ‘nother story) and I went home to recover.

At this stage I STILL wasn’t positive for BIA ALCL. In my post-op review on 23 December, my surgeon told me that the initial report was clear. I did not have BIA ALCL. I spent a very emotional Christmas thinking I had dodged a bullet, but at the same time, not convinced that the initial report was enough. I had a dread, a dragging gut feeling that this wasn’t over.

Then on 29 December, my surgeon rang me as I was cooking dinner for the kids and said, “I’m sorry, it’s BIA ALCL. I’m referring you to an oncologist.”

I hung up in shock, hugged my husband and tried to process the news –  this was some serious freaking sh!t about to blow our family up.

LIVING WITH LYMPHOMA - THE CHEMO CLUB

The next week I was in the oncologist’s office. He very matter of factly told me I was Stage 3, I would start chemo in 6 days, I could not work, could not train in a public gym, would be having 6 cycles of chemo scheduled 3 weeks apart and I had less than a week to wrap up my business and prepare for the fight of my life.

WHAT THE ACTUAL?

Heartbroken, I told my gorgeous clients. Devastated, I told my kids. Terrified, I discussed my will and life insurance with my husband. Everything was changing and I wasn’t ready. I was still recovering from surgery – still had stitches and pain and I was about to lose my hair, lose my income, lose my social life and lose my sense of self.

The first cycle of chemo I bounced back, determined to be the poster woman for coming out of chemo shredded, happy, healthy and transformed. Cycle 2 I was hospitalised. Cycle 3 I was bed bound for 5 days, overcome with grief, loneliness, isolation and nausea. With 3 more cycles to go and no indication of whether this b@stard chemo was even working I was ready to quit.

And you know my household rules: We don’t lie and we don’t quit. Except I was quietly ready to just let this cancer do what it would with me. I thought about dying, I thought about leaving my kids, I sobbed on Todd’s shoulder and I forced myself to get out of bed.

THE HALFWAY MARK - REMISSIOn!

And then. After 3 cycles, I had my mid-treatment PET scan. The results? CLEAR. No sign of cancer. In medical terms it’s called NO EVIDENCE OF DISEASE. In Courtney terms it’s called F*CK YEAH!

We are winning, and although I still have 3 rounds of chemo to go and a looooooooong way back to recovery, we have smashed the first hurdle. The chemo is working, my body is holding up and I am focused on seeing this thing through.

Stay tuned for more.

Follow my ups and downs with BIA ALCL on my Insta: instagram.com/athletist_

Check out my special vid of losing my hair and shaving it all off

In my Highlights, I’m saving all my cancery experiences.

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