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ILC AND BILATERAL MASTECTOMY

EilyEily Member Posts: 8
edited July 29 in Social Groups
Hi everyone 

I was diagnosed this year with ILC. I’ve had a lumpectomy and a wide axillary clearance in April. Of the lymph nodes, Only my sentinel node was diseased. 

I am currently undergoing chemo (TC) 4 cycles 3 weeks apart. I have 1 cycle left. Woo hoo!

Ive met with the Radiation Oncologist who wants to zap my whole breast 25 times and locally 5 times. I’m not keen for this. 

I met with my Breast Surgeon yesterday and have requested a bilateral mastectomy. Whilst she doesn’t recommend it as a necessary treatment, she supports my decision. 

I’ve been doing research and am just wondering how many people with ILC have been recommended for a mastectomy and why?  I’m just trying to understand why it isn’t  being recommended for me. 

I want a bilateral mastectomy because it is ILC and difficult to find. I also understand that reoccurrence is common. I had a mammogram and ultrasound last July that was clear. I felt pain in my breasts December 2019 / January 2020 similar when I get my period that didn’t subside, hence me investigating further. I was diagnosed after a biopsy in February. So in a 6 month period it has become detectable and spread. That concerns me. 

I would love to hear your experiences xxx

Comments

  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,706
    Hello @Eily you may like to post this question in the main discussion forum so other members can see and respond to you.  Let me know if you would like me to help with that.  Cheers Giovanna
  • EilyEily Member Posts: 8
    Yes please. I’m not really sure where to post it. Thank you
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,706
    No problems will post now in main discussion page @Eily cheers Giovanna
  • JennimJennim Member Posts: 10
    Eily said:
    Hi everyone 

    I was diagnosed this year with ILC. I’ve had a lumpectomy and a wide axillary clearance in April. Of the lymph nodes, Only my sentinel node was diseased. 

    I am currently undergoing chemo (TC) 4 cycles 3 weeks apart. I have 1 cycle left. Woo hoo!

    Ive met with the Radiation Oncologist who wants to zap my whole breast 25 times and locally 5 times. I’m not keen for this. 

    I met with my Breast Surgeon yesterday and have requested a bilateral mastectomy. Whilst she doesn’t recommend it as a necessary treatment, she supports my decision. 

    I’ve been doing research and am just wondering how many people with ILC have been recommended for a mastectomy and why?  I’m just trying to understand why it isn’t  being recommended for me. 

    I want a bilateral mastectomy because it is ILC and difficult to find. I also understand that reoccurrence is common. I had a mammogram and ultrasound last July that was clear. I felt pain in my breasts December 2019 / January 2020 similar when I get my period that didn’t subside, hence me investigating further. I was diagnosed after a biopsy in February. So in a 6 month period it has become detectable and spread. That concerns me. 

    I would love to hear your experiences xxx

  • JennimJennim Member Posts: 10
    Jennim said: Hi Elly,  Just wondering how you went with your double mastectomy?  I have been diagnosed with TNBC and Invasive Pleomorphic Lobular carcinoma and have only had a lumpectomy (will be having chemo & rads).  I also had TNBC in 2013 in the other breast also just a lumpectomy.  Considering a mastectomy.....thanks

    Eily said:
    Hi everyone 

    I was diagnosed this year with ILC. I’ve had a lumpectomy and a wide axillary clearance in April. Of the lymph nodes, Only my sentinel node was diseased. 

    I am currently undergoing chemo (TC) 4 cycles 3 weeks apart. I have 1 cycle left. Woo hoo!

    Ive met with the Radiation Oncologist who wants to zap my whole breast 25 times and locally 5 times. I’m not keen for this. 

    I met with my Breast Surgeon yesterday and have requested a bilateral mastectomy. Whilst she doesn’t recommend it as a necessary treatment, she supports my decision. 

    I’ve been doing research and am just wondering how many people with ILC have been recommended for a mastectomy and why?  I’m just trying to understand why it isn’t  being recommended for me. 

    I want a bilateral mastectomy because it is ILC and difficult to find. I also understand that reoccurrence is common. I had a mammogram and ultrasound last July that was clear. I felt pain in my breasts December 2019 / January 2020 similar when I get my period that didn’t subside, hence me investigating further. I was diagnosed after a biopsy in February. So in a 6 month period it has become detectable and spread. That concerns me. 

    I would love to hear your experiences xxx


  • EilyEily Member Posts: 8
    Hi @Jennim Im having my bilateral mastectomy next Thursday. I can’t wait. I’m ready for the next step now. 

    Lots of hugs and strength to you xxxx


    Eily
  • JennimJennim Member Posts: 10
    Good luck Eily....
    You are indeed brave.  How long do you have to stay in hospital for?
    sending those hugs & strength back at you:)
  • EilyEily Member Posts: 8
    Thanks Jennim

    i will be in hospital for a week with a total recovery time of 6 weeks 😺

    I can let you know how the recovery Is if you like?

    It can be a big decision. 

  • MazbethMazbeth BrisbaneMember Posts: 58
    Hi @Eily and @Jennim I was diagnosed with ILC in Dec ‘19 and I had 4 x AC and 12 x taxol. I knew from the beginning that I wanted a BMX as I have had a lot of anxiety for many years when I had annual mammograms and ultrasounds. My surgeon was very supportive of my decision. I had the surgery in June with expanders put in and I have just had another ‘fill’. My recovery went really well - I was in hospital for 1 week. The pathology showed the tumour was contained and the nodes were clear. The surprise in the results was that my good breast had some abnormal cells - not cancerous, but they would have probably needed attention once they showed up in screening. I was back driving after 3 weeks - make sure you check with your insurance company to check what their requirements are. You will be given exercises to do and they are essential as they help get your movement back. I am wishing you both healing and strength. Take care. 
  • EilyEily Member Posts: 8
    Hi @Mazbeth thanks for your comments. I was on 4 rounds of TC. Not sure why we had different chemo regimes??
    I’m really looking forward to next Thursday. I feel like I’m taking my power back 😺

    I will give my insurance company a call. That’s a good idea to check. Thank you 😺
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