What are you supposed to do if you have been given the textured implants (linked to lymphoma)?

Sarah-AnneSarah-Anne Member Posts: 15
I have the Mentor Memorygel textured implants which are on the "voluntary recall"  list in the US but I don't know what the advice is here in Australia.  I had my reconstruction (after double mastectomy) in the public system in Sydney but I have not been contacted by the plastics team about the lymphoma risk.  Does anyone else have  textured implants and if so what are you doing, are you leaving them in or having them changed for the smooth ones or having no more implants?  I have no idea what to do.  I don't really like the idea of waiting to see what happens.
Thanks!

Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 2,856
    I've got one textured and one not. Getting to the bottom of this is exhausting me. I don't know what to do either. M x
  • primekprimek Broken HillMember Posts: 5,170
    edited November 10
    Make an appointment to speak with your surgeon to discuss these issues. You need the stats and facts about your particular implant and if there should now be increased monitoring. I had an ultrasound at my last surgical review.
    The stats vary widely on risk (between 1 in 1000 and 1 in 10,000 for mine) and although lower than breast cancer risk it's still a risk. Also it's only been a reportable cancer in the past few years so more accurate statistics are still to come.
    Myself, I'm looking at having mine removed and own tissue reconstruction. I have allergan implants which account for over 80% of the diagnosed patients. 
    Whilst I don't want more surgery, as I thought I was done for at least 8 years before needing changeover. It has made me think about need for future surgeries as I age and so I will go on a non urgent waiting list for  own tissue reconstruction whilst still have my health on my side. 
    I have concerns about recovery of this and time off work and risks. All things I have to think about before I do this.
    Changeover surgery is quite minor. If you do develop the lymphoma though I believe they remove the implant and capsule and at this time I don't believe they are replacing with another.
    You can contact The Australian breast device registry for more information and to check on your device. 
    https://www.abdr.org.au/

  • iserbrowniserbrown Regional VictoriaMember Posts: 3,779
    edited November 10
    Agree wholeheartedly with @primek ; An appointment with your Specialist to gain a full understanding of what is best for you. 
    It's a so and so however my Specialist has instilled confidence in my situation at present. 
    I have also engaged an Exercise Physiologist to help cope with side effects and regain some lost fitness  (a slow work in progress)

    No right or wrong in this it's individual!

    The hardest thing to get my head around is that it's okay for us to walk around with the implant in.

    Take care and best wishes 
  • Jane221Jane221 Central Coast, NSWMember Posts: 1,136
    Hi @Sarah-Anne, I'd agree with both @primek and @iserbrown as the advice seems to be ensuring you are regularly monitored and to let your specialist know if you have any concerns. This is from the TGA:

    "...medical experts do not recommend removing them if you do not have symptoms of BIA-ALCL. This is because BIA-ALCL is very rare, and the risk of undergoing surgery could be higher than the risk of developing BIA-ALCL."

    You can read more here: https://www.tga.gov.au/alert/breast-implants-and-anaplastic-large-cell-lymphoma

    If you're in Sydney, there is an Implant Check Clinic at Macquarie University's Health Clinic: https://muh.org.au/services-specialties/breast-implant-clinic/our-services-2/ that could provide more advice or book you in to be checked over but your own specialist is likely your best first port of call. Jane xx
  • primekprimek Broken HillMember Posts: 5,170
    @Jane221 yes they say very rare...but as I said it wasn't reportable until a few years ago and the stats for my implant range from 1 in 1,000 to 1 in 10,000 presently. I consider rare to be 1 in 250,000.
    My reasoning is if you bought a lotto ticket with only 1000 tickets sold, you'd consider you'd have a good chance of winning. 
    My discussions with my surgeon was my health risks if I did get the cancer as chemo did have effects on my heart. So this lead to the decision that the risk isn't worth waiting on "wait and see". Again my implant is an allergan which has the highest risk.
    So yes...discuss with surgeon and go from there. 
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