Part of me wonders

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MariannaLaFrance
MariannaLaFrance Member Posts: 777
If I should not have done a mastectomy. I keep reading about DCIS recurrance rates, and it seems that many women who get DCIS at a younger age (I am 40), stand bigger chance at recurrance of invasive cancer. My BS told me I had about 8% chance of recurrance, but when I look at studies, I start thinking that I should have just had a bilateral MX. Frown

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  • dsj
    dsj Member Posts: 277
    edited March 2010

    well, I've been wandering around that literature too.  My worry is not age but close margins.  I have read a lot over the last few days about calculating risks of recurrence, and I have concluded that it is not something I can do by myself.  I think margin status, tumor size, grade (all of w hich are very favorable in your case) lower your risks (don't know about your margin), though young age does raise it.  How these all factor together seems really complicated.  I would talk to your doctors; this is something a radiation oncologist or medical oncologist should be able to address for you.  

  • mom3band1g
    mom3band1g Member Posts: 817
    edited March 2010

    I think being grade 1 I would be OK with lumpectomy and rads.  But, I also know that unless you are 'there' it's hard to say how you would feel.  It is hard to see a lot of recurrances.  Everytime I read about one after a mast I freak out just a little.  I try to remember that we hear about them here so much because women come here for support.  The ones who don't have a recurrence... we usually don't hear from.  Does that make any kind of sense?  So, here it seems a larger percent have a recurrance but in the bigger picture it is probably very small.

    It's so hard not to worry though!

    k

  • Bless
    Bless Member Posts: 141
    edited March 2010

    Mom,

    I think you hit it right on the head. 

    I hope you don't all mind me posting here.  I was orig diagnosed with DCIS but then the diagnosis changed before my lumpectomies (but after 3 months of research Smile)  Personally I got 1 cm margins on ILC & PLCIS and have decided to just wait and watch.  It's what makes sense to me despite my age 43 at diagnosis.  It's what I'm comfortable with.

    If it's going to make you stress...that's not good for you or healthy for you.  Don't rush into anything, but go and talk to your doctor or find another one that you are more comfortable with.  I went to 2 surgeons, had 3 labs review my stuff, 1 med onc and 1 rad onc before I made my decision.  Discuss with a doctor that you trust, are comfortable with and who's opinion you respect what your concerns are and what you can do about addressing them.  Seriously, stress can really take a toll on your body. 

    I'm not saying that I don't think about it.  I do, but it doesn't keep me up at night.  I think it is normal to have it pop into your head from time to time. 

    I hope that this comes across as me just being concerned for you...

  • mom3band1g
    mom3band1g Member Posts: 817
    edited March 2010

    Bless - I, for one, love to hear from other women!  Even though we may be different 'stages' we are all dealing with cancer...just don't tell us DCIS girls we don't have cancer!  We all need to supprt and help each other no matter our stage. 

  • laurakay
    laurakay Member Posts: 109
    edited March 2010

    I just wanted to say that I just had a bilateral, but it wasn't because of studies.  Every doctor made it very clear that, yeah, the chances are better of recurrence (obviously, as you've still got a breast or breasts) but that it made NO DIFFERENCE in survival/cure rates, and that DCIS in one breast did NOT spread to the other breast, and spread in the same breast was going to be caught, again, early, and dealt with.  They told me this over and over.  But I had grade 3, and heredity, no chance of lumpectomy on the breast with DCIS because it was so widespread, and knew I would keep getting calcifications that would have to be biopsied on the other.  I would definitely not have done this in your situation if I'm reading correctly. 

  • roseg
    roseg Member Posts: 3,133
    edited March 2010

    I think you're overrating your risk on more DCIS, which laura rightly points out does not translate into an increased chance of death -- just an increased chance of more visits to the doctor.

    If the weather report says there is a 92% chance of sunshine do you wear your raincoat, boots,  umbrella and keep your kids inside in case they get struck by lightening ? If more DCIS is rain that's an 8% chance. 

    I might take my umbrella, i.e. continue getting annual mammograms/breast exams, but do I really need to deck myself out in the full rain gear? It's hot, heavy and can be expensive!

    It's hard when you are in the middle of diagnosis/treatment to remind yourself that you are not likely to have this problem again. But someday this will be in your rearview mirror.

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    Marianna, I don't have much to add to what laurakay and roseg said, except that I agree.  Well, one other thing I'll say is that if I'd had a choice to have a lumpectomy (I didn't - my DCIS was too widespread) and I could have come out of it with an 8% recurrence risk, I would definitely have chosen lumpectomy over mastectomy.  No question about it.  So if you were comfortable with your decision when you made that decision, don't let what you read on this board influence how you feel or make you question your choice.  The women here are not representative. Most women who have lumpectomies for DCIS leave the board soon after rads is over (if they have rads) and in most cases, we never hear from them again - they are off living their lives, recurrence free!

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