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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: DCIS and contemplating having a double mastectomy

Topic: DCIS and contemplating having a double mastectomy

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jun 13, 2013 04:22PM

FieldMomma2012 wrote:

Hi everyone I was diagnosed with DCIS last April 2012 and had a lumpectomy in June 2012, Radiation in September and am now taking Tamoxifen for 5 years.  My questions is this past year I have spent alot of time worrying about the DCIS returning or even developing invasive.  I have issues with my female organs and they can not do a hysterectomy because mine tested positive to hormone so if they did a hysterectomy I would have to take hormone pills and that would feed the cancer.  I am just wondering if any one has opted for a lumpectomy and radiation then went back after the face and had a double mastectomy.  I have been reading up on this and to me it seems that there is not alot knows on DCIS so they dont know if and when it could return.  What are your thoughts.  I am 42 years old so I think I have alot of life ahead of me :-) I am scheduled to meet with a Beast Plastic Surgeon next week.  Thank you and God Bless :-)

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Jun 13, 2013 10:11PM mepic wrote:

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.

Dx 2/4/2013, DCIS, Stage 0, Grade 2, ER+/PR+, HER2-Dx 3/27/2013, IDC, <1cm, Stage Ib, Grade 1, 0/3 nodes, ER+/PR+, HER2-Surgery 03/27/2013 Mastectomy (Right); Lymph Node Removal (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)
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Jun 13, 2013 11:25PM, edited Jun 13, 2013 11:39PM by lisagwa

FieldMomma2012- Have you read Beesie's thread, "A Laypersons Guide to DCIS. it is extremely informative and might help answer some of your questions. I have read on these boards that some women didn't have correct margins after lumpectomy and later chose BMX. its your body. Your allowed to change your mind or not for whatever reason. One of the reasons I had a BMX was because I thought I would worry less.

Re- your hysterectomy decision, I had a hysterectomy a month ago. I am ER/PR- but I am not taking hormone pills. I started taking lexapro for hot flashes and to help with other things. Not sure about your specific situation but my rule of thumb is to have 2nd consultations/ opinions. Best wishes with everything.

Dx 2/2012, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-Surgery 03/23/2012 Mastectomy (Left); Prophylactic Mastectomy (Right)Surgery 06/19/2012 Reconstruction: Breast implants (permanent) (Both)
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Jun 18, 2013 03:02PM Konacarol wrote:

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.

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Jun 18, 2013 04:26PM, edited Jun 18, 2013 04:31PM by hoping42

Hello!  I, too, have no regrets about having my surgery with immediate reconstruction.  I am doing very well now and keep healing every day!  I hope that you find comfort and peace in whatever decision you make regarding surgery options.  I wish you well!  I should mention though that my pathology after lumpectomy showed pagets so I didn't do radiation because I had a mastectomy a few weeks later.   I am not taking tamoxifen as I am er negative.

Dx 1/19/2013, DCIS, Stage 0, Grade 3, 0/1 nodes, ER-/PR-, HER2+Dx 2/8/2013, Paget's, <1cm, Stage 0, 0/1 nodes, ER-/PR-, HER2+Surgery 02/05/2013 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Surgery 02/21/2013 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Mastectomy (Right); Reconstruction: Tissue expander placement (Both)Surgery 05/30/2013 Reconstruction: Breast implants (permanent) (Left)Surgery 05/30/2013 Reconstruction: Breast implants (permanent) (Right)Surgery 12/13/2013 Reconstruction: Nipple reconstruction (Both)
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Jun 19, 2013 03:15PM Shellshine wrote:

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.

Dx 1/16/2013, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+Dx 1/16/2013, <1cmSurgery 01/25/2013 Mastectomy (Left); Lymph Node Removal (Left); Prophylactic Mastectomy (Right); Reconstruction: Tissue expander placement (Both)Surgery 05/03/2013 Reconstruction: Breast implants (permanent) (Both)
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Jun 20, 2013 01:30PM lisagwa wrote:

Shellshine- I agree with everything you said.

Dx 2/2012, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-Surgery 03/23/2012 Mastectomy (Left); Prophylactic Mastectomy (Right)Surgery 06/19/2012 Reconstruction: Breast implants (permanent) (Both)
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Jun 24, 2013 05:08AM Hindsfeet wrote:

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.

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Jun 26, 2013 09:25AM Beesie wrote:

FieldMomma, have you talked to the plastic surgeon?

You are a year out from your diagnosis and seem to be doing well. So I think that what you are going through are the normal fears that we all face.... and frankly, I think we all have these fears, whether we have a lumpectomy or a mastectomy.   That's just a normal part of adjusting to life after a diagnosis of breast cancer. 

What were the specifics of your diagnosis?  The grade and size of the DCIS, the size of the margins?  That all plays into your risk level.  I appreciate your fears - they are completely normal and natural fears - but I think in making such a major decision, you really need to understand what your risk level to develop a recurrence or a new primary breast cancer really is.  Have you talked to an oncologist about this?

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jun 30, 2013 06:22AM bsthomp1 wrote:

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.

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Jun 30, 2013 01:44PM Shellshine wrote:

It's a hard choice to make. BMX with reconstruction is at least a year long journey to have the procedures completed and then the psychological adjustment to living with the results. I'm moving along that path, now, and still feel I made the right choice, but it is not one to be taken lightly. 

Dx 1/16/2013, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+Dx 1/16/2013, <1cmSurgery 01/25/2013 Mastectomy (Left); Lymph Node Removal (Left); Prophylactic Mastectomy (Right); Reconstruction: Tissue expander placement (Both)Surgery 05/03/2013 Reconstruction: Breast implants (permanent) (Both)
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Jul 1, 2013 07:28PM Anne9d wrote:

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?

Dx 6/10/2013, DCIS, Stage 0, Grade 3, ER+/PR+Surgery 08/14/2013 Mastectomy (Both)
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Jul 1, 2013 07:29PM Anne9d wrote:

I forgot to mention that my older sister was diagnosed with breast CA at 40 and died at 51. My maternal aunt also had ovarian cancer. I thought because of the family history it would be better to deal with it now.

Dx 6/10/2013, DCIS, Stage 0, Grade 3, ER+/PR+Surgery 08/14/2013 Mastectomy (Both)
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Jul 1, 2013 07:43PM exbrnxgrl wrote:

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

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur

Dx 7/8/2011, IDC, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2-Surgery 09/07/2011 Mastectomy (Both); Lymph Node Removal (Left); Reconstruction: Breast implants (permanent) (Both)Radiation Therapy 11/15/2011 ExternalHormonal Therapy 11/21/2011 Arimidex
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Jul 1, 2013 08:19PM krissy42 wrote:

It is so helpful to read everyone's experience with DCIS.Thank you for your sharing. I was just diagnosed about 2 weeks and it seems unreal. Most of my family and friends are telling me stage 0 is nothing, and it's barely cancer.  After more reading, I'm finding out that a masectomy could be my doctors reccomendation if the DCIS is widespread. 5 days prior to the news, I was laid off. So now I'm dealing with fears of insturance switching mid treatment if and when I get a new job. Perfect timing!

I just finished my pre-op testing today and had my blood drawn for the the BRCA gene mutation. Next Wednesday I go in and have another biopsy with my surgeon. The core needle MRI biopsy revealed one bad spot (high grade dcis) and the other area is atypia cells. She wants to see whats going on in between the the two point before making any decisions.

Prior to this DCIS, i had a biosied fibroedenoma in the other breast that reveals the LCIS maker. With this and my family history, no kids, I'm up there already for risk factors. Now a diagnosis of DCIS and I'm entertaining the idea of a bilateral masectomy. This entire thought process is draining, and I have no connections wtih people in this same situation. I would love to hear from you.  Thank you

Dx 6/14/2013, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+Surgery 09/27/2013 Mastectomy (Right); Reconstruction: DIEP flap (Right)
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Jul 1, 2013 09:33PM Anne9d wrote:

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.

Dx 6/10/2013, DCIS, Stage 0, Grade 3, ER+/PR+Surgery 08/14/2013 Mastectomy (Both)
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Jul 1, 2013 10:48PM krissy42 wrote:

Anne9d,

I just sent my blood work in for BRCA testing. If my insurance company approves, it will cost 0 to 375.00..which I will pay. If they say no, it would cost almost 4k according to my genetics counselor. She also said that because of the Angelina Jolie thing and the supreme court ruling there are new labs out there offering the testing. But, my hospital system does not want to use the new places yet becasue of all the irregularites in test results that Myraid has already ironed out. And because these are private companies, they don't share thier data bases. If they say no, and I'm up against a 4k bill, I may turn down the testing becasue based on my couseling session, they don't think we have the gene in my family. My sister was diagnosed with breast cancer 3 years ago and was negative for the gene. But, my breast surgeon wants to get me tested anyways.

Take care, K

Dx 6/14/2013, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+Surgery 09/27/2013 Mastectomy (Right); Reconstruction: DIEP flap (Right)