Understanding the signs and symptoms of Breast Implant Associated – Anaplastic Large Cell Lymphoma (BIA-ALCL ) 

BIA-ALCL is a rare type of non-Hodgkin lymphoma linked to highly textured breast implants. It’s not a breast cancer, but a lymphoma, a cancer of the cells of the immune system linked to breast implants. 

The causation is still not fully understood, but there are incredible researchers world-wide trying to get to the bottom of it. Dr Suzanne Turner is heading up the research of BIA-ALCL in the UK at Cambridge University and during my filming with Dispatches, I was honoured to meet her in her research lab.

As of June 2019, the MHRA (UK regulator) states that the chances of developing BIA-ALCL is 1:24,000 – although speaking with Mr Wilkinson, the head of medical devices at the MHRA, he has stated that this figure may well be inaccurate and underdiagnosed. This is because there are no real statistics to show how many women in the UK actually have highly textured implants, including the banned brand Allergan. 

Signs and Symptoms.

Onset of symptoms normally occurs at least one year after implantation. 

The most common presenting symptom is a swollen breast. This is caused through a seroma (fluid build up) between the implant surface and the fibrous capsule. Sometimes this can occur in both breasts, but that is very rare (1). Newly occurring asymmetry of the breasts.

  • Pain in the breast(2)
  • A hard lump(2)
  • Inflamed/ large lymph nodes(2)   in auxillia and armpit(4)  
  • Thickening of the scar capsule(4)  
  • Rash – on the breast, back (like shingles), can sometimes be similar to exzema(4)
  • Itching which feels like a deep seated itch that you can’t get to. There is no relief from scratching(4)  
  • The symtpoms of inflammatory cancer can be the same symptoms as BIA-ALCL(4)

 

alcl2

Image taken from FDA website (3)

 

Investigation & Testing

A physical examination by a surgeon or clinician will occur. 

An ultrasound guided aspiration (collection of the fluid) will occur and then be sent off for specific testing, CD30 and Anaplastic Lymphoma Kinase (ALK) markers. 

BIA- ALCL can only be confirmed if the CD30 is positive and the ALK is negative. 

If there is a lump, this will also be biopsied. 

If BIA- ALCL is confirmed, a PET-CT scan may also be performed to rule out any spread of the disease. 

If lymph nodes in the armpit are abnormal, then they will also be removed and sent for testing. This would normally be performed at the time of the explant surgery(1)  

 

Treatment

Removal of the implant and the scar tissue known as a capsulectomy.(1) 

If the capsules are not removed the risk hasn’t been removed. ALCL will continue to grow without implants in dwell. See below link for more information on en bloc. (4)

BIA ALCL surgery and En Bloc resection. Images of asymetric breast, surgery (graphic). Click here for paper… Enblock-BIA-ALCL

Possible follow up treatment depends on the stage of the disease. 

Stage I     = explantation of implant and capsule

Stage II+    = requires more aggressive treatment, such as chemotherapy

Prognosis

If caught early, removal of implant and capsule is normally enough to cure the disease(1)

 

UK Research

Asking for help from women that have just been given the news they were dreading feels wrong.  But if it wasn’t for other incredible women that have already been in this situation who have given their time, the research already completed couldn’t have happened and we are just so grateful.

Everything you need to know about this study is on this cancer research link below … 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-find-more-about-causes-breast-implant-associated-anaplastic-large-cell-lymphoma-bia-alcl#undefined

This study is looking at tissue samples, breast implants and blood samples from women with breast implant associated anaplastic large cell lymphoma. It is run by the lovely Dr Suzanne Turner.

Dr Suzanne Turners research papers:

https://www.researchgate.net/publication/332625122_Is_breast_implant-associated_anaplastic_large_cell_lymphoma_a_hazard_of_breast_implant_surgery

https://www.researchgate.net/publication/330767007_The_Cellular_Origins_of_Breast_Implant-Associated_Anaplastic_Large_Cell_Lymphoma_BIA-ALCL_Implications_for_Immunogenesis

 

Legal Action

Leigh Day is investigating potential legal claims for those who have textured Allergan implants and are concerned about BIA-ALCL. https://www.leighday.co.uk/Allergan-claim

 

Support Groups & Websites

Group :  BIA- ALCL https://www.facebook.com/groups/ALCLinwomenwithbreastimplants/

Website: https://biaalcl.com/fbclid=IwAR3Ur2xwyEIYDGF6qq5pd1wQDaObnaBhYL7GlOM0ZnOoX0nW2DIJdbUVPTM

Reference List

  1. Turton.P, Johnson.L, (n.d) BIA-ALCL [online] https://associationofbreastsurgery.org.uk/clinical/bia-alcl/ [accessed 17 June 2019}
  2. Kricheldorff, J. Fallenberg, E.M. et all. (2018) Breast Implant- Associated Lymphoma [Online] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6218708/ [accessed 17 June 2019]
  3. Image – https://www.fda.gov/medical-devices/breast-implants/questions-and-answers-about-breast-implant-associated-anaplastic-large-cell-lymphoma-bia-alcl
  4. Information supplied by Terri McGregor BIA-ALCL group

 

This post is dediated to the amazing awesome and wonderful Julie Harris. The bravest lady I know,  who is currently kicking BIA-ALCL to the curb. If this information had been available to Julie when she was showing signs and symtoms of this lymphoma cancer, then she wouldn’t be currently going through stem cell treatment to save her life. Please help raise awareness and share this blog post. Thank you. x

5 thoughts on “Understanding the signs and symptoms of Breast Implant Associated – Anaplastic Large Cell Lymphoma (BIA-ALCL ) 

  1. Vanessa bell says:

    Thank you for all this information, I am currently going through what could possibly alcl, I have a biopsy Tuesday 2nd of july ,then see what happens after, although I’ve already been informed by the surgeon mr Paul sugden that he is still performing the operation and treating it as I do have alcl because the biopsy could come back as a false negative ,the capsule will be sent off to be tested, my head is spinning and my anxiety is the roof but I want to to everything I can to get this out there and to make sure someone is accountable and take responsibility for this.

    Liked by 1 person

  2. Ashley Odey says:

    Thank you for the information.
    I have Nagor textured implants- can I ask why they haven’t been banned when Allergan have?
    I’m looking to get an MRI for my implants-when I met with the specialist at the NHS she said that women are still predominantly receiving textured implants… why is that?

    Like

    • Miss Diagnosed says:

      Thanks for your message. According to the MHRA they don’t see a reason to ban Nagor. They also don’t see textured implants as a major issue, that said this is based on current statistics, which the MHRA have said could increase due to the fact there isn’t a proper database.

      Like

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