Preventive mastectomy before pregnancy? 31 widespread ADH

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Lotusconnie
Lotusconnie Member Posts: 101
edited June 2014 in High Risk for Breast Cancer
I am 31 now. I had two surgical biopsies in the past year showing widespread ADH, associated microcalcification and mucocele-like lesions.

I have had 3 miscarriages at or before 6 weeks of pregnancy. The most recent one is last month. Due to cultural background and other factors, I am under great pressure to try to have a kid from our own desires and also greatly from my in-laws.

My friends and also myself keep on thinking for me how dangerous it is for getting pregnancy with these changes. Should I never try to conceive rather than seeking a surrogate mother? Should I have preventive treatment? If preventive treatment, I would like to consider preventive mastectomy.

However, my oncology at the high risk clinic told me that it is low risk for me to have breast cancer in the next five years and she does not opt me to have tamoxifen treatment. Why I read totally differently here? Many people go ahead to have DCIS after ADH.

And I am so young to start to have ADH. Shouldn't I be considered more high risk?
Shouldn't pregnancy be considered high risk for our group? ADH without any treatment now?

And I am obsessed with the idea of asking my husband to leave me and find another young and healthy woman to have a normal family life with him.

I have had 3 such discussions with him this year and everytime it is so heart-breaking. He might consider it or not, but he said that if he leaves me then I will be so miserable and he does not want me to be so miserable. When I think of the possibility that he leaves me eventually, I cannot stop crying.

I don't know if I should go ahead to try to conceive and take the risk of progressive ADH into DCIS or breast cancer.

I don't know if I should consider preventive mastectomy. If so, one side or bilateral?

And I don't know what should I do. I am totally confused.

Today I took a road test to try to get my driver's license and I failed. I feel so frustrated. Every small bit of frustration makes me feel more miserable although it may not be a big deal itself.
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  • kreativek
    kreativek Member Posts: 58
    edited September 2009

    I am sorry for all you are going through.  I am in my late 40's and had a bilateral preventive mastectomy last year due to ADH/family history.  You are so young and yet high risk due to your ADH.

    I know of a young women that have had preventive mastectomies before starting or completing their families.  Obviously, they will not be able to breast feed when they have children.   What do YOU want to do?  Do you want to continue to try and have children first?  Do you want to take a break from trying and have a preventive mastectomy?

     Personally, I would choose having both sides done so you have the maximum benefit and  so they match.  These are personal decisions only you can make based on your values.  I do know young women that have had the preventive mastectomies and either had another child or plan to do so.

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  • Lotusconnie
    Lotusconnie Member Posts: 101
    edited September 2009

    Dear Kreativek, Thank you so much for your reply. I am just so scared of the big surgery. I am worried about how big it will be if I have a bilateral one and if it will let me lose my job and if it will be so hard for me to recover physically. I really need someone who have known this to tell me how it is like.

    Thank you so much for your help above.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited September 2009

    Preventive mastectomy sounds like a drastic step to me. Their is not a straight line, as I understand it, between atypical ductal hyperplasia and progression to cancer. Yes, the risk is higher with ADH.

    A couple of considerations if you don't mind:

    How is this ADH being picked up? By scan? In other words, why can't the area be very closely watched during a pregnancy. This is not 100% perfect, but pre-awareness of a high risk state can help. 

     What do your doctors propose for the source of repeat miscarriages? Do you have any auto immune disease (your body fight's itself) or hormone problems? Are you seeing a infertility specialists to help you?

    One recent article I read did associate two full term pregancies shortly after one another with an increase risk of breast cancer. My children are close in age. So I guess I had hyper estrogen for two years in a row. 

    I empathize with the stress you're under. It's a very personal decision, and I hope you might talk with a fertility specialist and breast cancer surgeon. Miminal breast surgery is currently (for quite some time now) in favor.

    Best,

    Tender

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    Dear Connie,

    My son married a woman from China. They were both older than the average first time parents. Before they were even trying to have a child, she developed a large lump in one breast. It was removed and the pathology report was similar to yours. Later, they seemed unable to get pregnant, so she went to China for an infertility workup because it is so much less expensive than here. They found problems. The couple was in the process of making a decision about using a surrogate, using in-vitro fertilization, or adoption when they were very surprised and pleased to find that she was pregnant!

    She had a normal pregnancy and delivery and breast fed for a year. The child is now three years old and there is no evidence of breast cancer at all. She is watched very closely.

    If ADH eventually turns to cancer, it likely will take years. It will start with DCIS, which is being studied right now as perhaps a normal part of life for many women and might not need agressive treatment. If it breaks out of the duct, it becomes IDC and demands treatment. 

    It seems to me that there is plenty of time for you to have a child without worry.

    The miscarriages at 6 weeks are another matter. You need a thorough workup by a fertility specialist. There may be a problem with your uterus that can be corrected, a subtle infection that can be treated, hormone imbalances. 

    You and your husband need to be strong together, and let your family know that you plan to present them with a healthy baby but it will be on your own schedule. It breaks my heart that you feel you have to let your husband find another woman. I hope the love between you is more powerful than the troubles you are going through. And that you will go through them with honor.

    Big hugs!

    Judie

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  • Lotusconnie
    Lotusconnie Member Posts: 101
    edited September 2009

    Dear All, I really appreciate all of your help and warm words. I am right now seeing a specialist in infertility clinic and doing blood work and hysteroscopy. I am also followed up by a breast clinic.

    I accidently felt a lump in my right breast in 2007 when I was 29. Core biopsy showed it to be a fibroadenoma with usual ductal hyperplasia. After my first miscarriage in 2008, I decided to get it removed. And then they found several foci of ADH and also mucocele-like lesions. After half a year, I was followed up by a breast clinic and I had another mammogram and it found loosely clustered microcalcification. I had a surgical biopsy this March and the pathology report showed "Multiple foci of atypical ductal hyperplasia in a background of columnar change and flat epithelial atypia, associated with microcalcifications."

    I had first miscarriage at 6 weeks last June, second one at 5 weeks this May and third one at 5 weeks this August. The first time my HCG went up to 500, the second to 200 and the third to 50. I had chromosome test and some blood work came back as OK. But I have a slightly decreased level of free Protein S that I had it repeated and pending now. My husband had blood work and the results is pending. I will have more tests this month.

    I pray that I could possibly be as lucky as Towhee's daughter-in-law.

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  • LISAMG
    LISAMG Member Posts: 639
    edited October 2009

     Do you have a family history of BC? If so, have you considered genetic testing? It would be in your best interest to seek genetic counseling prior to any decisions. You are definitely high risk. Gather all the facts, seek opinions. Best wishes to you.

    Stratification of Breast Cancer Risk in Women With Atypia: A Mayo Cohort Study!!

    http://jco.ascopubs.org/cgi/content/full/25/19/2671

     ...We have identified a NEW histologic variable that appears tostratify risk in women with atypia: MULTIFOCALITY. The RR ofbreast cancer increases in a dose-response fashion for womenwith one, two, and three or more foci of atypia, with a statisticallysignificant test for trend. With a single focus, the cumulativeincidence of breast cancer reached 18% at 25 years. For womenwith two or more foci of atypia, the cumulative risk of breastcancer was greater than 40% at 25 years. Moreover, in the highestrisk subgroup of women with three or more foci and histologiccalcifications, the cumulative incidence exceeded 50% over 25years. This level of risk approaches that reported for carriersof BRCA mutations...

    In conclusion, our study provides a comprehensive analysis ofbreast cancer risk associated with atypical hyperplasia. Thesefindings confirm a four-fold RR of subsequent breast cancerin women with atypical hyperplasia. We estimate that the long-termabsolute risk of subsequent breast cancer (in situ or invasive)is higher than previously reported-at least 25% at 25years, and as high as 50% to 60% in a high-risk subgroup definedby multifocality and calcifications. A positive family historydoes not confer significantly increased risk in women with atypia.Improved risk prediction and stratification is now possibleto guide risk-reduction counseling for women with atypical hyperplasia

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