Anyone treat DCIS in one breast then get BC in the other breast?

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mel147
mel147 Member Posts: 479
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I have confirmed DCIS in my right breast that requires a mastectomy due to the size of the mass.  I will be having a lumpectomy on the left breast at the same time to check an area of concern.  I have been reading a lot on this site about DCIS and it has been very informative.  What I am wondering is who here treated DCIS in one breast and later developed BC of any type in the remaining breast?  I am waiting on the results of genetic testing.  If those are positive, I will have a bilateral mastectomy, but I am trying to determine what I should do if the genetic testing is negative.  I'm trying to decide between the lumpectomy or mastectomy on the left side.  Also, does anyone know if insurance would cover that or if they would say no if there is not diagnosed cancer in the left side?  Thanks!

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  • WOT
    WOT Member Posts: 19
    edited June 2014

    Hi mel147. I had DCIS in both breasts 17 years apart. I had lumpectomies & radiation on both breasts. 3 years following the last one the DCIS returned. At that time I had a BMX.  Pathology after BMX showed nothing on the side that had the DCIS 20 years prior.  My genetic testing was negative. It was a tossup on the right but I'm happy with my decision. Good luck with what you decide. My insurance paid for both. 

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  • ballet12
    ballet12 Member Posts: 981
    edited June 2014

    Hi Mel, the majority of women with DCIS in one breast don't go on to have a diagnosis in the other breast (there's about a 1 percent chance per year of diagnosis--varies somewhat, but unless one has a higher genetic risk, the risk is pretty low).  If you ask your question on this website, you are likely to get at least a few affirmatives, as this is a breast cancer website.  Those who are diagnosed with a  second primary are more likely to end up here (as WOT did), and the others are not on this website.  The insurance should cover you for bilateral mastectomy regardless of whether the genetics are positive or not (in the United States).  The decision you face, if the genetic testing results are negative (and if the excisional biopsy on the other breast is negative) and you don't have a strong family history, is likely to be based on how much anxiety you have about NOT doing the prophylactic mastectomy on the other breast, as well as the worry which would ensue every time you go for mammography, etc.  The screening and the worrying is sometimes too great for some to bear.  Anyway, read the thread that Beesie created on the DCIS threads, on the decision that you need to make. There are other factors involved in the decision, which are amply covered in that thread.  I did not have a mastectomy on the breast with DCIS, even though I had a lot of pathology, but it did require three lumpectomies to achieve clean margins.  I came close to the situation where I had no choice, and I did have cosmetic changes from the multiple surgeries (on top of previous surgeries on that breast), but it all turned out OK.  I wish you luck on this journey.

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  • BookWoman
    BookWoman Member Posts: 104
    edited June 2014

    mel, I had DCIS in the left breast in 2010 and then tubular carcinoma in right breast in 2012. Had lumpectomy and radiation for both and am now on letrozole. I also had endometrial cancer in 2009. Genetic testing was negative. I do get a little nervous when I have a mammogram, but I can live with that. Good Luck with your decision.

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  • mel147
    mel147 Member Posts: 479
    edited June 2014

    Ballet12 - Thank you very much for your post.  You made a lot of really good points in it!  I did read the posts by Bessie - they were very helpful as well.

    WOT and BookWoman - thank you for sharing your experiences!

    Even though I hate making big decisions, I really am hoping my genetic test results will be negative since I'd rather have a choice with my left side.

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  • ballet12
    ballet12 Member Posts: 981
    edited June 2014

    Hi Mel, if you do a mastectomy on the other breast, how would you feel if that side comes back with no diagnosis?  Will you be OK with that, as you are dong a preventive measure, or will you feel that maybe you did too much.  Again, I'm asking this objectively.  My surgeon actually posed that question to me, as I faced the third lumpectomy on the diagnosed breast.   How would I feel if they now find no more pathology in that breast?  You can even do this in stages, if unsure.  You do the mastectomy on the breast with DCIS, and the excisional biopsy on the other breast (technically it's not a lumpectomy).  If, later on, you have waves of anxiety about not doing it, you go back and do it.  You just can't undo a mastectomy once it's done.  Insurance in the US, will cover a prophylactic mastectomy on the other breast, even if done at a later time (has to do with cosmetic symmetry, etc.)  Just a thought.  Well, I certainly hope your genetics are negative (most are--at least for what they are currently testing).

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