DCIS again

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guineamom
guineamom Member Posts: 62
edited October 2017 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with DCIS in 2012 on left breast. Did lumpectomy, radiation and tamoxifen, even did oophorectomy. I was just diagnosed with DCIS on right breast, ER+/PR+. So frustrating... I thought with tamoxifen and oophorectomy, things like that will not happen. Now is to think if I want mastectomy or lumpectomy. Spouse is very against mastectomy as he thinks its an overkill. Just venting...

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  • Susug
    Susug Member Posts: 193
    edited September 2017

    Guieneamom - I was diagnosed with IDC in 2014 left breast small 4mm tumor. Did lumpectomy and radiation. Then in 2016 I was DX with DCIS in my right breast this took me by surprise. I really had to think about what I wanted to do. My bs said a lumpectomy and rads would be fine. I decided to get another option. Saw two more Dr said lumpectomy would ok. My twin sister had BC 16 yrs ago she had double mx with recon and chemo she was more advan than me BUT. It took me a couple of months to finally decide on a lumpectomy. My next mamo is next month and I'm a little worried.its your descion to make. I know how you are feeling now. My sister is deceased not from cancer. I sure wish I had her while going through this. I was with her every step of the way when she went through this. Now tha I'm going throuh it I realize I didn't have a clue what she was going through she seemed so strong. Now I know we all try to look like we have it all together. I will be thinking about you. Hugs Sus

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2017

    Hi guineamom:

    I am sorry about your new diagnosis. Back in 2013 you wrote:

    https://community.breastcancer.org/forum/47/topics/810600?page=1#post_3694162

    I'm BRCA2, 40+ years old, disgnosed with DCIS last year. . .

    In another thread, you identified a specific BRCA2 mutation.

    I do NOT know anything about your specific mutation. However, in general, although individual risk tolerances and choices may differ, IF a particular pathogenic mutation in BRCA2 carried by a woman was known to confer a significantly increased lifetime risk of breast cancer, then the choice of bilateral mastectomy would be a reasonable choice and I would not consider it to be "overkill" in any way, particularly in a relatively young person who was already diagnosed with two independent primaries (synchronous or asynchronous bilateral disease).

    Have you consulted with a Genetic Counselor (preferably at a major academic cancer center) regarding what is known about the lifetime risk of breast cancer (as well as ovarian, Fallopian tube, and/or peritoneal cancers and other cancers) in women with the specific BRCA2 mutation you carry? A genetic counselor may be able to provide an estimate of your remaining lifetime risk in light of the specific mutation and your current personal medical history (with second diagnosis) and family history. This type of information would be very relevant to any decision you may make at this time regarding choice of surgery.

    It may be helpful for your husband to accompany you to various appointments (surgical consultations; genetic counselor consultations) and hear directly what the risk and related medical advice is. You may wish to ask your surgical or medical oncologist to explain to him how an invasive breast cancer diagnosis, even if caught at an early stage, may still confer some risk of suffering an incurable distant metastatic recurrence.

    As the person who will directly bear the burden and risks of any additional diagnosis, you must decide what is best for you.

    Best,

    BarredOwl

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  • guineamom
    guineamom Member Posts: 62
    edited October 2017

    Previously I mentioned I had DCIS again. Went to see the doc and she said it's DCIS AND IDC, currently stage 1. I had my husband with me during that appt and we (me, hubby and doc) did talk about mastectomy. What came out of the appt is I will do another lumpectomy. None of us could agree on what to do after the mastectomy so we took the "stop gap solution" ie lumpectomy. I was leaning towards either no reconstruction or DIEP if reconstruction. Hubby definitely against DIEP, doc wants me to do reconstruction, leaning towards DIEP but no strong opinion against implants. Anyway now waiting on surgery for lumpectomy and the final staging.

    BarredOwl, to your question of whether I did talk to a genetic counsellor, yes I did back in 2012. I looked at my family history, so far most of the ladies got breast cancer but none of them got breast cancer more than once except me. Plus I had my ovaries removed and am on tamoxifen, which supposedly should reduce chance of recurrence and new cancer. Apparently that didn't help. And interestingly is this new cancer is still ER+. Doc said this is really rare. :)

    Weird thing is I am not worried about this new diagnosis at all. Surgery is taking a long time to schedule, I don't feel stressed. Most days I even forgotten that I am diagnosed with cancer. But now I have a new worry. I was just laid off from work and looking for a new job. I may be getting new employment soon but am worried how am I going to go to all the doc appts if I have a new job. Will look real bad if I constantly take leave on a new job. I think I can negotiate with the boss to start work earlier in the day so that I can go radiation late in the day. But if I need chemo, how am I going to work it into my work schedule? Anyone works while doing chemo? How bad is it? I'm thinking of rejecting chemo if my staging remains stage 1. Guess will see how things turn out.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2017

    Hi guineamom:

    Did you inform your current surgeon of the results of your prior genetic test? Even if it is in your medical file somewhere, it could be overlooked. If you did not specifically discuss your prior BRCA2 test result with your current breast surgeon, please be sure to bring the test results to his attention before finalizing your surgical plans.

    I am sorry that IDC was also found, and that your diagnosis is no longer pure DCIS. If you later receive a recommendation for chemotherapy, there are several threads about chemo and work in the Forum "Chemotherapy - Before, During, and After" or you can look for a thread relevant to a particular regimen. In some cases, scheduling treatments for later in the week may be helpful.

    What do I do about work? https://community.breastcancer.org/forum/69/topics/859036

    Did you work through chemo" https://community.breastcancer.org/forum/69/topics/856900?page=2#idx_31

    As far as whether to reconstruct or not (in case of mastectomy), it is not your doctor's choice, but yours.

    Best wishes,

    BarredOwl

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  • guineamom
    guineamom Member Posts: 62
    edited October 2017

    Yeah, my surgeon knows I am BRCA+ and is supportive of me doing lumpectomy. She said the whole purpose of doing mastectomy is the prevent cancer on the other breast. Because I already have cancer on both sides, my chance of getting new cancer after lumpectomy is about the same as the general public w/o the gene mutation. She is not any fly-by-night surgeon, is from one of the top cancer center so I trust her.

    Thanks for the links on chemo! Going to check them out now.

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