another Newly diagonsed DCIS thread

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  • annettek
    annettek Member Posts: 1,640
    edited January 2011

    Horse'n-

    My PS warned about the nipples possibly "turning black, etc" and that was all I had to hear. After making the monumental (in my mind) decision to go with BMX and immediate construction (did not radiation/chemo)- I didn't want to face that. NOr the fear of clear margins-I know myself and I would have been worried about old lefty's calcifications turning malignant...no thanks. It would have knocked me out mentally. I have to say, although I am a total nutcase these past few days, the only thing not messing with my mind are my tissue expanders...the breast reconstruction has been far above what I could have expected. My PS is very cautious and very skilled. He does not want pain for me and wants as perfect a result as possible. I mean even the TEs look halfway decent and I am only halfway there. My exchange is set for late Feb. I do not regret my decision in the least. THe bigger one I am having a problem with is my decision not to take Arimidex-like you, I refuse the side effects-so I am going the natural route with DIM and some other estrogen inhibitors that won't kick my butt and that I can take for the rest of my life. The five year limit gave me pause...and told me I don't want to risk the side effects. If my blood work supports this choice, I will stay with it. If not, then I will reconsider at that time. Good luck and welcome. Say whatever, ask whatever:)

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  • annettek
    annettek Member Posts: 1,640
    edited January 2011

    Horse'n- I love your quote "Every horse is good for something, even if he's only good to look at" I have a dream to get one...they are magnificent:)

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  • horse-n-around
    horse-n-around Member Posts: 79
    edited January 2011

    Annettek,

     the quote is just a every so slightly changed quote from the movie Seabiscuit, of course my daughter tells me that about my horse all time (she thinks my horse is a brat! LOL, of course I call her horse a woose! LOL)  its all in fun.

     They are one of the only things helping keep my head at times,  I go out and get greeted and it makes me smile.   

    On the BMX, I am not going to do the nipple sparing (if I go that route).  By doing the nipple sparing, my BS said some duct work is still there, thus its opportunity of DCIS to show up and my one margin is a tad bit close. 

    I figure I am in the prime of my life and I won't let a drug (IE: Hormone blocker) get in my way by torturing me with the side effects.  I'd rather lose both breasts than suffer side effects like bone pain, depression, more head aches, ect  for the next 5 yrs, plus the possibilty of increasing my chance of getting uterine cancer.  Just not worth it to me.

     I will make my final decision after my onc visit,  the waiting is really shear torture!

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  • azul115817
    azul115817 Member Posts: 98
    edited January 2011

    Horse-n-around,

    You and I have a lot in common.  I'm 44 and was diagnosed with DCIS - 3.2 cm, grade 2, hormone posititve with some necrosis.  I was also small breasted (although I didn't have implants) and suffer from chronic migraines.

    Although I was uneasy with the idea of radiation and hormonals, I tried a lumpectomy first.  My margins came back too narrow, and so I opted for a bmx.

    I really didn't struggle with my decision.  In my particular situation, I felt a bilateral mastectomy made the most sense because: 1)  Neither mammogram or MRI picked up the full extent of my DCIS and I feared that there may have been more still left in the breast (there was - as I later found out);  2) Because neither scan was able to pick up all the DCIS, I would not feel reassured by future "clean" mammograms on either breast;  3) I was not particularly attached to my breasts and the thought of removing them did not bother me;  4)  I am a worrier, and my tolerance for risk is low.  Removing both breasts gave me great peace of mind; 5) I have a high threshold for pain, and the thought of surgery didn't worry me; and 6) I wanted to avoid radiation and hormonals if possible.

    Of course, I weighed in the negatives of the surgery as well, but the arguments for the bmx far outweighed the arguments against it in my particular case.

    This certainly is a process that involves balancing physical health with mental health.  I had the lumpectomy and still felt uneasy afterwards (with the % risk of recurrence and the follow-up treatment).  I had the bmx and felt a huge sense of relief.  Knowing yourself and your tolerance for risk is really important.

    Good luck!

    Heidi

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  • Nedeza
    Nedeza Member Posts: 666
    edited January 2011

    gymnut~

    DCIS can be referred to as "pre-invasive" cancer because if a conservative approach is taken such as lumpectomy/radiation there is a chance that it can come back in which my surgeon emphasized that it can come back as invasive & be aggressive at that.  So I can understand why it can be referred to as pre-invasive when this can lead to such a case depending on tx actions.

    NAE

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  • horse-n-around
    horse-n-around Member Posts: 79
    edited January 2011

    Well, I finally met with the Onc yesterday.  Firmed up my decision and on we go.  I am now scheduled for a bmx on Feb 16th.    My husband & I spoke about it a lot as it seems like a pretty drastic for what is not considered a life threatening cancer.    I would have only done the right if I could have had a non-surgical biopsy on the left if something "suspicious" ever showed up.  Because of my current implants  and severe lack of natural breast tissue the sterotactic biopsy is no go.  The thought of going through a major surgery to take off the right, then knowing in my head that sooner or later something that warrents investigation would show up and I would be back in surgery on the left.

     I just don't want to have to deal with this again, EVER.

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