Courtney’s Story – Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL)

Courtney was diagnosed 7 months ago, in December 2021, with a rare subtype of non-hodgkin lymphoma: BIA ALCL at only 46 years old.

Breast implant associated anaplastic large cell lymphoma is an indolent (slow-growing) T-cell lymphoma that develops very rarely following silicone breast implantation (‘implants’).  This can particularly occur with textured implants rather than the smooth type implants.  Although it develops in the breast, it is not a type of breast cancer.  Scientists think that it might be caused by an inflammatory reaction to the implant.

Courtney explains in her video that she had a pain under her right arm that didn’t go away, and a lump near her implant.

Over 3 months, Courtney underwent a multitude of tests, the removal of implants, and after initially being told there was no cancer just before Christmas, was finally diagnosed in the New Year when scattered cells were found; it was Stage 3. Life then turned upside down.

Symptoms she experienced included being exhausted, pain in her armpit, a lump, random sweating, and really itchy palms of hands and soles of feet.

Chemo commenced ASAP – the high risk of infection meant she had to close her personal training business, and then tell her young family. Courtney’s treatment regime was 6 rounds of CHOP. The chemotherapy really knocked her around and each round got worse. Quality of life was zip.

Then some good news – no evidence of disease at end of round 3. But there was still 3 more sessions to undergo.

When she lost her hair, Courtney describes it as the most heart-wrenching and soul destroying moment. Until she then lost her brows and lashes too!

Now 3 months post treatment she is in remission, with 5 years of check ups to go.

“Life is becoming more normal – hair is growing back, energy is coming back, taste is returning, weight is stabilizing, and I feel life is getting back on track.”

COVID times means Courtney is yet to return to work due to being immunocompromised.

“I am adapting – growing – living!”

Thank you Courtney for sharing your experiences.
You can follow more of her life on Instagram: https://www.instagram.com/athletist_/ and her website blog “Killer tits – my boobs are trying to kill me!”
 

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Please note: Lymphoma Australia staff are only able to reply to emails sent in English language.

For people living in Australia, we can offer a phone translation service. Have your nurse or English speaking relative call us to arrange this.

Useful Definitions

  • Refractory: This means the lymphoma does not get better with treatment. The treatment didn’t work as hoped.
  • Relapsed: This means the lymphoma came back after being gone for a while after treatment.
  • 2nd line treatment: This is the second treatment you get if the first one didn’t work (refractory) or if the lymphoma comes back (relapse).
  • 3rd line treatment: This is the third treatment you get if the second one didn’t work or the lymphoma comes back again.
  • Approved: Available in Australia and listed by the Therapeutics Goods Administration (TGA).
  • Funded: Costs are covered for Australian citizens. This means if you have a Medicare card, you shouldn’t have to pay for the treatment.[WO7]

You need healthy T-cells to make CAR T-cells. For this reason, CAR T-cell therapy cannot be used if you have a T-cell lymphoma – yet.

For more information on CAR T-cells and T-cell lymphoma click here. 

Special Note: Although your T-cells are removed from your blood for CAR T-cell therapy, most of our T-cells live outside of our blood – in our lymph nodes, thymus, spleen and other organs.