DCIS and BRCA2 diagnosis, what to do?

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puppylvr
puppylvr Member Posts: 1
edited October 2016 in High Risk of Recurrence or Second Breast Cancer

In December I was diagnosed with DCIS, had a lumpectomy with clear margins. Radiation was recommended but I was waiting until I got the results of the genetic testing, I am positive for BRCA2. I don't know what to do. If I have radiation and the cancer comes back, can I not have reconstruction? I'm just going back and forth, prophylactic mastectomy or hyper vigilance. Would like to hear from those who had to make this hard decision also.

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  • mrsheidivp
    mrsheidivp Member Posts: 2
    edited March 2007
    I'm right there with you Puppylvr. I also was diagnosed with DCIS in late December, lumpectomy with clean margins in January (actually partial mastectomy). Immediately went for genetic testing due to my strong family history and found out I am BRCA2. So I am trying to make the same decision as you. Radiation or risk reducing mastectomy? To answer your first question, as I understand it, if we have the radiation now and the cancer comes back (or we develop a new cancer in the same breast) in a year or two, we CAN have reconstructive surgery, BUT its not nearly as easy. We would not be able to have the skin sparing mastectomy with expanders and implants that we can have now because of the damage to the radiated skin. We would have to use one of the other methods such the TRAM or the DIEP, which are a little more intense. This website has very good information on both if you want to look them up. This is what my plastic surgeon has told me.
    May I ask how old you are? I am 36. Trying to make this decision is not easy and I need to make it soon. We delayed beginning my radiation to wait for the genetic test results and the breast surgeon doesn't feel comfortable delaying it much longer. I would love to hear what things are on your mind and how you are feeling.........since unfortunately people outside our situation just can't understand or sympathize with the decision we are trying to make. Please contact me......
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  • JustTurnedForty
    JustTurnedForty Member Posts: 289
    edited March 2007

    I have not had a confirmed DCIS diagnosis (stereotactic biopsy showed atypical ductal hyperplasia bordering DCIS). My surgeon recommended a surgical biopsy (lumpectomy) to make a confirmed diagnosis. My other breast has 3 areas of calcifications & they all have atypical ductal &/or lobular hyperplasia. I have not had the BRCA testing & I only have 1 aunt who has had breast cancer. I am taking the drastic approach--having a bilateral mastectomy. I figure if at 40 I already have 4 areas of atypical cells (which did not show on a mammo at 35), I believe my chances are high for recurrence. I would rather nip it in the bud now--have a skin & nipple sparing mastectomy, & hopefully have half-way looking normal breasts without having to go through any chemo or radiation. From what I have read on these types of forums, it seems that many people who have had lumpectomies & radiation, end up having recurrence. (Although it is possible that these forms draw women who have had bad experiences.) Some people think I'm nuts for taking such a drastic measure. I don't want to worry for the rest of my life that breast cancer is going to attack me at any moment. I wish you both peace with your decisions.

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2007
    puppylvr,
    When I was diagnosed with DCIS I also went for BRCA genetic testing. I'm lucky - my results came back negative on BRCA1 and BRCA2. But as I was waiting for the results, I did give a lot of thought to what I would do if the results were positive. My case was a bit different than yours, since my DCIS was extensive; because I have small breasts, I had to have a mastectomy anyway. But I decided that if I was BRCA positive, I would have an ooph, but would not have a prophylactic mastectomy of my other breast.

    It's very personal decision and not being in your position, I won't offer any advice except to check out the Reconstruction Forum on this discussion board. Lots of women have had reconstruction after radiation; asking them questions about their reconstruction might give you more information to help with your decision.

    Good luck!
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  • CalGal
    CalGal Member Posts: 469
    edited March 2007
    I understand about the dilemma on rad'tn and concerns about later recon if a mast is needed. I'm there too ... but I've already had rad'tn.

    Although I knew that bc in my family was genetic (mom and maternal grandma both had bc in their 40s), I did NOT get the BRCA test until AFTER a bc recurr, mets to the liver and unrelated renal cell carcinoma (kidney cancer). I'm BRCA1 and as with 70-80 of BRCA1, I'm triple negative (for BRCA2, it's the opposite, most are hormone pos).

    While I focus on being positive and going forward, I should have looked into ALL of the BRCA implications at the time of my initial dx ... I was annoyed at the genetic counselors at my HMO who were so focused on the probability formula (duh ... with my history and a very small family, it was quite obvious what the probabiity was ... and I was already dx'd with bc ... ). I've done a ton of research and there was much more info out there than my HMO's genetic counselors relayed ...

    On my initial dx, I was extremely relieved to that bi-lat lump's (invasive on L & DCIS on R), SNB (3 taken, all clear), rad'tn on the invasive side and no chemo were appropriate. However, less than 1 year after rad'tn, I found the recurr. My HMO did NOT do any bloodwork or scans on my initial dx ...

    I've been very fortunate that my bc has been NED for 6 mos (after chemo and radio-frequency ablation - RFA - of the liver mets) and I just had RFA of the kidney cancer. Now I'm looking into bi-lat mast & recon. Yes, the rad'tn makes recon more tricky, esp since I don't want and don't have enough tissue for an abdom flap or GAP and I want both breasts to use the same recon method. Although riskier for failure, I intend to go with implants. So far, I've had consultations with 3 ps's. While there were similarities in their comments/rec'dtns, there were also differences.

    At this time, you might want to research recon options (not everyone is a candidate for all of them) and consult with some ps's ... as well as consulting with a radiologist and oncologist might help your decision.

    I know that being BRCA1, I should also look into an ooph, and while I've started that research, I'm just not ready for that one yet ...

    Best wishes,

    CalGal
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  • ellenj
    ellenj Member Posts: 5
    edited March 2007
    puppylvr: I was diagnosed with bc in January (just after my 50th birthday). I decided to test for BRCA before treatment -- just got the results a week ago: BRCA2+. While I had initially wanted a lumpectomy, now that I've tested positive I have decided on bilat mastectomy, to be done next friday. It was a decision that I agonized over, but am now feeling very confident that it is the right decision. I can not however deal with having an oopherectomy or not. It is all too overwhelming and I feel like I have to deal with the cancer that I know I have first. Then I think I'll travel to a genetic counselor to help me with the ooph decision.

    Hang in there
    Ellen
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  • almost50
    almost50 Member Posts: 3
    edited March 2007
    Here is a good article. It describes when it might be appropriate to have a bilat. mastectomy, but it also talks about breast tissue that may be left behind, so I felt like it might be good to know that for any of you out there who are considering it.

    http://www.mayoclinic.com/health/prophylactic-mastectomy/WO00060
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  • Ltb3105
    Ltb3105 Member Posts: 87
    edited March 2007
    I, too, am on the fence. I had IDC, 1 cm tumor, node negative and had chemo and rads. I just had the test as my ins. co. now will pay for it and I am positive for the BRAC2. Both my mom and had had BC.

    If you choose surgery, you STILL are left with breast tissue. My oncol. told me even with reconstruction, I would still have to get mammo's, and even with an ooph or hysterectomy, you still have to go for pelvic exams and PAP test.

    Because of my strong family history, I was going every 4 mos. anyway for labwork, CT and bone scans. Now since I tested positive, they have added pelvic sono's and I have to get mammo's twice yearly now. I am almost five years out this coming July and hope to stay that way.

    Laura
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2007
    Each diagnosis is so different. I am stage 2 IDC. As soon as I was diagnosed with breast cancer, I had made the decision to have a bil. mastectomy, reconstruction with expanders/implants and removal of my ovaries. I did have genetic testing and I came back BRCA2 positive. The test result came back the day of my surgery so it confirmed I had made the right decision for me.

    Sometimes when I read things here on these boards I get confused. Like where do some of you get all of your facts. For example - after my reconstruction I cannot get mammograms. They would not benefit any detection of cancer cause of the silicone.

    And where is it written that most BRCA2 are er/pr positive? Im er/pr negative.

    I had 2 sisters. One passed away from cancer of the ovary at age 46 12 years ago. They didnt have genetic testing then. If they did, I would have tested positive and would have chosen a prophylactic bil. mast. Now Im dealing with invasive ductal that spread to one of my lypmh nodes. My older sister was diagnosed with bc 3 months after me. She tested positive for the same BRCA2 gene.

    The best advice I can give it to go with what your heart is telling you.

    Nicki
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  • Msklapkin
    Msklapkin Member Posts: 208
    edited March 2007
    I was Diagnosed 8/05 lumpectomy and SNB- 1 positive SN- then tested and found BRCA2+. It was the easiest decision for me- I had Bilateral mast and oopherectomy. I could not spend my life waiting for the other shoe to drop! Never questioned my decision at all- My onc said if it was his wife- he would do the exact same thing!.
    My thought was I wanted to be as ggressive as possible to insure I got it all. also went thru dose dense chemo.
    Now almost 2 years out and getting ready to celebrate that milestone!
    It is very personal- good luck with any decision you make
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  • veggievet
    veggievet Member Posts: 72
    edited April 2007
    Dear Laura,
    Although some of what your oncologist is saying is true, I'm afraid it is being presented with a bias. I urge you to seek out an expert in genetics so that you can receive the most up-to-date information. Most women (but not all) who have prophylactic mastectomy do not get mammos. And although you would still need a pap smear after oophorectomy, the risk for ovarian cancer is waaaaaay lower.

    I encourage you to consider attending the FORCE conference May 18-19 in Tampa. It will be the world's largest gathering of BRCA experts and BRCA carriers. These issues regarding screening and decisions of mastectomy vs. surveillance will be discussed in detail by the worlds top BRCA and genetic experts.

    http://www.facingourrisk.org/conference

    I'd love to speak with you further about your oncologist's comments and about seeing a genetics expert. You can e-mail me at:

    sueanddan@att.net

    Warmest regards,
    Sue
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  • lguise
    lguise Member Posts: 4
    edited April 2007
    Hi,
    In February 2007, I was diagnosed with high grade DCIS, comedo necrosis with a core biopsy (Mammatone). I got a second opinion which changed the diagnosis to "ductal interepithelial neoplasia, Grade 1". I then got a third opinion, which again changed the diagnosis to "atypical ductal hyperplasia". All three pathologists used the same slides. The surgeon suggested I have an excisional biopsy to determine once and for all if it is DCIS or ADH and when I got th e results back, all he could tell me is that all the suspect tissue was removed during the earlier core biopsy and the margins (unspecified by the pathologist)were normal tissue. So the issue remains - I am in that "grey area" between ADH and DCIS but the problem is that the treatment plan for each is very different. My oncologist has offered Tamoxifen but I am wondering if I should consider a) a mastectomy or b) radiation before Tamoxifen and c) genetic testing. I feel that the offer of Tamoxifen just doesn't cut it when it comes to reducing the chance of recurrence. My gut is telling me to treat this as DCIS and go for a mastectomy and genetic testing.
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  • ddd
    ddd Member Posts: 82
    edited April 2007
    Logu,

    I would have an excisional biopsy, so new slides could be made from various sections of the lesion.
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  • Carolslowski
    Carolslowski Member Posts: 5
    edited April 2007

    I applaud you for such a brave and informed perhaps life-saving decision. When I was diagnosed with DCIS in 2000, I knew nothing...until I had the lumpectomy and radiation. Both were not only painful and traumatizing but later I found out that I would not be able to have reconstructive surgery if in the future I had to have a mast. Now...7 years later, I find I have new calcifications where my lumpectomy site is! I also have a lump in my other breast! Sooooo, now what do I do if I need a bi-lat? I think you are doing the absolute best thing for yourself! I am backing you 110% I still down't know what the Braca2 thing is. I don't think I had it tho cuz I know nothing about it.

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  • rubytuesday
    rubytuesday Member Posts: 2,248
    edited June 2007
    Mod notified and changing subject back....don't these idiots have a life????????????????????????????
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  • marylourn
    marylourn Member Posts: 4
    edited July 2007

    I had a lumpectomy and rad and 6 yrs later had a recurrence in the scar. I had a mastectomy and reconstruction at the same time. I had a tissue expander and later, a silicone implant. It was a real psychological boost to have a "breast after the surgery. And Yes - you can have implants after rad.

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  • maryjanem
    maryjanem Member Posts: 3
    edited October 2016

    Hi, I am wondering how you are doing. I see you posted this some years ago. It is now 2016 and it matters to me to see how we do a few years down the road. I am 52, Brca2 Pos, just diagnosed with stage 2, dcis, after tons of counseling I am going through with a double masectomey in 3 weeks. Thanks, Mary

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