Diagnosed with DCIS I have implants

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  • melclarity
    melclarity Member Posts: 3,507
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    Oh being contained in a duct isnt a reason for a mastectomy, it's usually so many other factors, whether it's a tumor or multi focal spots over an area. So it really is dependent on the lumpectomy and the results of that to confirm exactly what you do have. Certainly ask the Surgeon exactly what they'll do, after lumpectomy dependent on results. Generally you wouldnt require chemo as Kath said for DCIS. I had DCIS back in 2011, and needed radiation and was Oestrogen positive so Tamoxifen. It really depends on the results, its hard to not think the worst especially a mastectomy. So make sure you are clear at the appointment of what they will do. x
  • Lisa Janelle
    Lisa Janelle Member Posts: 45
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    Would they do radiation sorry for all the questions. I hate not knowing. I know nothing will get done as it is Christmas new year worst timing ever xx
  • Caseypinto
    Caseypinto Member Posts: 258
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     Hi Lisa, I was diagnosed with high grade DCIS in June when I had a lumpectomy- they usually only do radiation if it's high grade,- but again up to your 'team' of carers- so you may be lucky and avoid that. I personally did not want radiation so, After two lumpectomies I opted for double mastectomy (did both because I'm a total worrier and couldn't live always wondering if it will come back in the other boob) and I also had micro calcifications, turns out it was a good decision as I also had ADH which is atypical ductal hyperplasia starting 10mm away from my original tumour.
    It all depends on your particular tumour - such bad timing for you over Christmas- as the girls have said the waiting is the hardest part. Ask as many questions as you like, that's why we're all here, so much support on this network
    Xxx
  • Lisa Janelle
    Lisa Janelle Member Posts: 45
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    I have to have a mastectomy I don’t think I can do it 
  • melclarity
    melclarity Member Posts: 3,507
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    Hi @Lisa Janelle how did the appointment go, what did they say? they wouldnt have complete pathology without a lumpectomy so not sure how any decisions would be made yet? Hugs Melinda xo
  • Lisa Janelle
    Lisa Janelle Member Posts: 45
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    My report from biopsy said I have a large area approx 7cm of microcalifications from nipple to chest wall. I can’t have a lumpectomy
  • Afraser
    Afraser Member Posts: 4,378
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    I know this is not the news you want. No-one wants this news. But you will be surprised at what you can do, if that's the best option for treatment and recovery. Have you some support at this time? 
  • Lisa Janelle
    Lisa Janelle Member Posts: 45
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    I have seen the surgeon I don’t understand why I can’t reconstruction after seems cruel to wait months. I don’t have the strength to live like this. How do u cope looking in the mirror I know that is selfish but I am leaning on the wall to do nothing 
  • Lisa Janelle
    Lisa Janelle Member Posts: 45
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    Is it ok to walk away and let it take its course. 
  • Lake Mac
    Lake Mac Member Posts: 7
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    Lisa it alot to take in. I'm sure your stronger than you think.....
  • melclarity
    melclarity Member Posts: 3,507
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    Hey @Lisa Janelle, I'm sorry to hear 7cm of microcalcification, what your Surgeon says sounds absolutely right in your circumstance. I sooo get not wanting to do anything, that maybe just let it run its course, I know Ive been there too at 1st diagnosis in 2011, you have the right to choose and control what you do. I do urge you though to try and step back and think about things, it is incredibly overwhelming and I understand as I couldnt have done a mastectomy at the point of being told where you are at the moment. IT is too much...

    I will tell you this though...I had DCIS lumpectomy. it was ER+ in 2011, I had clear margins no problems, no lymphs involved. Radiation and tamoxifen for 4yrs, so I did everything I could....I had a recurrence in the same spot 4yrs later but IDC 2.5cm tumor and had to undergo chemo. 1yr after treatment as preventative and due to recurrence in Feb of this year I chose a single mastectomy, my genetic testing was negative. Lisa, knowing what I know now??? had I have done the mastectomy I would not have faced the whole recurrence and chemo. 

    I admit as I was post treatment I had a single mastectomy/diep flap reconstruction all in one hit and yes it was so much easier psychologically and emotionally, I never looked back. Getting to that point was very difficult. I'm not sure in your situation why you couldnt have some sort of reconstruction at the same time. There are lots of ladies on here I really hope will jump in as I cannot recall who has had similar to you. 

    @nikkid had multifocal DCIS who maybe able to help you, also she is currently in hospital recovering from her revision surgery. 

    Lisa I also urge you to reach out to some counselling, it is so important right now where you are, be in through BCNA the Cancer Council or someone independant. It absolutely helped me enormously!

    Hugs Melinda xo
  • Lisa Janelle
    Lisa Janelle Member Posts: 45
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    I asked about reconstruction at the same time he was keen said I would need expander probably for 3 months. I don’t get that. At least fix it at the same time. He said the nipple would have to go. Do u know if I don’t have treatment how much time I would have left.  Seems all too hard. I am just recovering from back surgery only 6 weeks ago. Now to have another operation. I know this sounds selfish. But I think I am done. 
  • Afraser
    Afraser Member Posts: 4,378
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    I know this is hard but no-one knows how much time they have. Ever. My mother used to say life is what happens when you were making other plans. Your life just took a turn that's scary and unwelcome. Doing nothing won't end the uncertainty, it will just substitute one uncertainty with another. You need someone close at hand to talk to, there are people who can help you at this stage, as Melinda has suggested. I have spent the last 5 years with one breast. I can look in the mirror with ease. It's not a terrible thing to me, it's an obstacle that I overcame. My last five years have been great in many ways, would not have missed them for quids. Take heart, the fix is about your head and your heart not just your breast. 
  • melclarity
    melclarity Member Posts: 3,507
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    Nobody would know what would happen to be honest, and I get being done, Ive done it twice! a shocking 6yrs, but honestly, don't muck around with it. Yes correct, they'd use an expander as youd probably need radiation...so that takes time. Mine was different as I was post treatment so the mastectomy was preventative and so diep flap recon tummy tuck was done all at once. Generally you would have an expander. @cynth6 and @caseypinto have had this and @primek

    Please step back and take a breath, its so damn hard I agree!!! I just think you need to speak to someone.