Recurrence Fears after Mastectomy

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epink
epink Member Posts: 16
edited June 2014 in DCIS (Ductal Carcinoma In Situ)
Recurrence Fears after Mastectomy
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  • epink
    epink Member Posts: 16
    edited September 2010

    I had a bmx on July 6th and although I'm still pretty weak, I'm doing ok. No infections, etc, and have healed quickly. I have tried to start living my life again, but everytime I get stressed about something or upset I think, "This is going to cause my DCIS to come back," which then in turn of course makes me more stressed.

    Every doctor I've consulted (and there have been quite a few) has given me about the 98% cure rate mantra. But when I read these boards and others, it seems like that's not the case. I've been told to live my life and not worry, but then I read incredibly sad stories about women who had a recurrence not even a  year later. 

    I'm 39, and had bilateral DCIS, so of course that makes me even more scared. I didn't have a microinvasion (or so they could find) and had low grade in one breast and grade 2 in the other. 

    I'd love to hear stories from women who actually were cured--are they out there? Or maybe they are just living their lives, not worried....I am hoping for that day, although it doesn't seem to be in the near future....

    Have any of you other ladies gone through this? 

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited September 2010

    epink

    this board is rather slow so thought I would reply. I was diagnosed last year at 38. I am a year out from double mastectomy. I had DCIS on one side and atypical cells on the other. I still have daily anxiety about it coming back. Right now my back hurts and I think .. they missed something. I am not sure how to go live our lifes after this. I think as time goes on we think about it less. Also, remember most people do go on and live their lives and do not post here anymore. The 1-2% that get a recurrance come back and post so I do not think the board is a good way to measure the rate of recurrance.

    best of luck to you!!

    xxoo

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited September 2010

    epink

    this board is rather slow so thought I would reply. I was diagnosed last year at 38. I am a year out from double mastectomy. I had DCIS on one side and atypical cells on the other. I still have daily anxiety about it coming back. Right now my back hurts and I think .. they missed something. I am not sure how to go live our lifes after this. I think as time goes on we think about it less. Also, remember most people do go on and live their lives and do not post here anymore. The 1-2% that get a recurrance come back and post so I do not think the board is a good way to measure the rate of recurrance.

    best of luck to you!!

    xxoo

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited September 2010

    epink

    this board is rather slow so thought I would reply. I was diagnosed last year at 38. I am a year out from double mastectomy. I had DCIS on one side and atypical cells on the other. I still have daily anxiety about it coming back. Right now my back hurts and I think .. they missed something. I am not sure how to go live our lifes after this. I think as time goes on we think about it less. Also, remember most people do go on and live their lives and do not post here anymore. The 1-2% that get a recurrance come back and post so I do not think the board is a good way to measure the rate of recurrance.

    best of luck to you!!

    xxoo

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  • robinlbe
    robinlbe Member Posts: 585
    edited September 2010

    I'm not even a year out, but I don't worry a bit.  Not sure why, but I don't.  I'm out, enjoying life to its absolute fullest; I didn't have reconstruction, and even though I miss my breasts, I have gotten to the point, I have forgotten what they even look like! 

     I was having so much fun, celebrating life, that on June 7th, I was running to a ride in an amusement park with my kids, and my ankle turned and it broke in three places!!   AFter goign to the doc 2x, xrays and finally an MRI, they found it was broken, and two months later, I was put in a cast.  I chose the bright pink color....and taught a month of school like that.  Figured if I could beat breast cancer,  I could do anything :)

    I was diagnosed 11/6/09 and had the BMX on 1/6/10....hope that helps some.  I have been surrounded by a LOT of prayer and I am a believer.   I know things could have been SO much worse, and even though I would have prefered to never to have gone this route in the first place, I feel very blessed that my cancer was caught early., 

     I have even developed lymphedema....in the arm where only ONE node was removed.  go figure...but life is good. 

    blessings...robin

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  • iodine
    iodine Member Posts: 4,289
    edited September 2010

    Hi, I am 8 years out and still come to the boards, but I hang out in the Moving Beyond board most of the time.

    Thought you'd like to know that even tho few of us ever feel "cured", the vast majority of us will feel comfortable stating that we are living and dancing with NED, no evidence of disease.

    Thought you might like to hear from an "oldbie" on the boards.  It takes about 2 years before you begin to take deep breaths and feel that you are going to live.  It's about 18 mos. until you begin to believe that not Every ache and pain is cancer.  It seems like a long time, but it does get easier.

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