Newly diagnosed with BI ALCL Non Hodgkinson Lymphoma

FormerMember
FormerMember
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Hi everyone  I'm Casmatt001 I have been diagnosed with advanced BI ALCL from textured breast implants has anybody else had this I know it is very rare

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  • Hi  and welcome to the Online Community, although I am so sorry to see you having to find us.

    I am Mike  and I help out in our Lymphoma Forums. I have lived with a rare type of Skin T-Cell Lymphoma for over 20 years now and I am still around doing well - so be encouraged.

    BIA-ALCL (Breast Implant Associated -Anaplastic Large Cell Lymphoma) is rare and is indeed associated with breast implants. BIA-ALCL is another type of T-Cell Lymphoma and yes we have folks come on the site with this condition but not specifically BIA.

    A blood cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey can help a lot and will reduce the whirlwind wind that is rushing in your head.

    We do have our dedicated T-cell lymphomas Forum. Follow the link and join the group by hitting the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

    The best way to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first post.

    I will look out for you over in the group and will give you some more support.

    ((hugs))


    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember

    Hi, I'm Gill.  I had mastectomy, breast implant and chemo 5 years ago.  Lately I have been noticing a lot of swelling.  Today, following an MRI scan, my consultant drew off a lot of fluid and sent some for testing, and I heard him say that it was probably ALCL, so I am following this thread with interest.

    I would hate to go through chemo again, but it's better than the alternative!

  • Hi Gill and a welcome to you but sorry to see you finding us.

    When are you getting the results? Have you had a biopsy on the area.

    This is the only post by apart from joining the T-Cell Forum but let’s look to see if she picks up on your post.

    Always around to help out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Hi MIke

    Thanks for replying so quickly.  I had an MRI scan 3 weeks ago, which picked up a problem with fluid gathering around the implant, and also a hot spot on the other breast that needs more investigation.  I am now waiting for path lab results on the seroma removed, and a detailed ultrasound and will see the surgeon again in 3 weeks.

    I am hoping to find some moral support on here, as I am widowed (twice) and on my own.  I'm 59.

    Best wishes

    Gill 

  • Hi Gill, sorry to hear about the ‘life’ hurdles that you have had to deal with...... some folks do get a bad hand to play but most definitely, the Community is a great place to find moral support.

    I am told that there are over 80 types of Lymphoma  so this brings the lack of understanding/research for some types.

    I was diagnosed with my rare type of Cutaneous T Cell Lymphoma (Skin Lymphoma) (CTCL) way back in 1999. (see my profile for the long story) and was told it was incurable and I would not see any times of remission....... fast forward to September 2016  I was told that I was in Remission and NED (No Evident Disease).... party time. But this showed the ongoing developments in blood cancer treatments.

    Keep us up to date with what your team are saying. Even although there are lots of types on NHL treatment tends to follow the same basic route and with great results in a very high percentage of cases.

     ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge