DCIS and contemplating having a double mastectomy

Hi Fieldmomma I see no one has responded and I can't really respond to your question because I had a Bmx from the start. However, I think a good oncologist would be able to sit down with you and give you a good idea of how good your odds are which may relieve you of much of your worries. My first onco gave me no odds, didn't answer my questions and left me with a fatalistic view. My 2nd onco spent an hour with me, reviewed my pathology report in detail alongside my oncotypedx report and discussed in detail my odds of recurrence and how good my odds were (1 in 20 of recurrence for me). He even used the words, "The chances of this coming back for you are very small." We'll let me tell you I have rested much easier since that 2nd onco appt. and had I only had that first onco appt I may have been left worrying the way you are now. Might I point out I did already have stage 1 breast cancer, so that means you would have gotten even better odds and more reassurance than I got. I am a metaphor girl, and this is what I see this like....you ran over the beast with your car and killed him and drove away. Now you are safe at home but you are wondering if you should drive back to make sure it's still road kill. It is....the crows (radiation) ate up the carcass. If I was a betting woman ( which I am) I would place my odds on you that you will have that "a lot of life ahead of you." God bless you and hope whatever you decide that you find peace.

Just did this myself...never want to have to deal with the constant imaging ...have tissue expanders I , just had another 100 cc fill today. Not a great feeling but temporary....and I could not feel the DCIS so I remind myself of that. No regrets, looking forward to pushing through the expansion and reconstruction and going on with my life. I am 3 weeks post bilateral mastectomy with the Immediate reconstruction/expanders . Path report showed only DCIS in large are of one breast-high grade- nothing in other breast. I feel liberated. And grateful. You have choices that only you can make with the guidance of health professionals. I have no regrets as this choice was one that fits with my life plans.

I think it's a personal decision that only you can make.

It is a big adjustment learning to live with my newly reconstructed breasts, but the thought of forever worrying about future recurrences, not catching it before it spreads outside the ducts, etc would be worse for me, personally. I really miss my natural breasts, but prefer to not have the risk weighing in the back of my mind.

Double mastectomy is a huge decision, I made the right choice for me, but every woman needs to do what is "right" for her.

If I could go back in time, I would had done rads and not a masectomy. Not everyone has problems, but my implant is a constant reminder of breast cancer. I have constant contractures. Everytime I drive my reconstructed breast throbs. I feel it rubbing against my ribs. I've already had it replaced once. I don't want more surgeries and I don't want to live without a breast.

I've also learned that although I've had a masectomy, I'm still at risk for a recurrance. The recent MRI lit up on a spot that they are now watching.  I'm happy I didn't have a bilaterial mastectomy.

In the end it's your choice. I just thought someone should say a masectomy is not a cake walk and there can be life long problems...and it doesn't mean you are cancer free.

I too feel the same stress on making a decision for the lumpectomy or dbl mastectomy as breast cancer is in the family. And several areas are on the watch list which makes me lean towards the mastectomy and not worry so much, I am 55 and can handle it now. Not sure about later.

I just saw my surgeon today and told him I wanted a DMX. I am 45 and have two small boys that are 7 and 10. I also have an 84 year old mother that lives with me. She is in good health now, but I worry that if i end up with cancer in the other breast I will have to deal with another mastectomy again. After the surgeon visit I went to talk to the insurance person in his office. She told me that she didnt think that United Healthcare would pay for a DMX since I only had DCIS in the Rt breast. I was confused by that because it seems that many people in my situation have had them. Any suggestions?

Anne9d,

You mention family history. Have you been tested for the BRCA gene? Given what you've said about your family, a genetic counselor may recommend that test. Then, you might have even more information before deciding on a BMX (bilateral mastectomy).



Field momma,

I had a BMX with reconstruction and am very happy however I echo what hindsfeet said. For some women, it is not simple and can have lasting painful repercussions. It is also no guarantee that you won't have a recurrence or mets. Please try to find out from you mo what your risks really are before making such an irrevocable decision.

Caryn

Exbrnxgrl,

Yes I am waiting to get my BRCA results but based on what the genetic counselor said I was only tested so my children would know. I am just confused at why insurance wouldn't pay for BMX.



Krissy42,

I totally agree. This site has been very helpful to me. I have been glued to it since my diagnosis. Hugs to you. We will be traveling this road together.