DCIS=High Risk Factors & Current Implants - Not sure what to do!

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MoniW
MoniW Member Posts: 7
edited June 2016 in Just Diagnosed

Hi Everyone. First time poster, frequent lurker of the boards :) I've had such a long road to get to this point, I'll try to keep my story short.

I contemplated getting a breast aug for the last few years, using much caution since my mom was diagnosed w/BC at 43 (same age that I am now) and passed away by 45 - so I was very hesitant but really wanted it done. After consulting w/my PS, he convinced me that it wouldn't cause any complications should I find a lump or similar, so, dumb me trusted what he said and I did it in Oct '14. After a whole year of complaining to him that I still had pain, skin scaling, thickening and darkening all around the areola of my Rt breast, he continued to tell me he had no idea what was causing it and I was just taking a long time to heal on that side. I asked my PCP to send me for a mammo in Dec '15, and come to find out that I had a new microcalc cluster just behind the nipple (it wasn't there in May '14 before the breast aug.) Since my implants were in the way, we couldn't get a needle biopsy (tried 2x - ouch!). After meeting with a gen surgeon who insisted my calcs were benign, I had to wait 3 mos for him to get me in for a wire guided excisional biopsy - seemed like he was avoiding doing it. Finally it was done on 3/31/16. I got results on 4/8 with Dx of Stage 0, Grade III DCIS, both ER/PR+. But since that surgeon didn't think it was going to be cancer, he didn't get enough tissue to clear margins in that first round (*sigh*) so we went back in 3 days later for a re-excision that got us about 1mm cleared.

I was then sent from this surgeon to see a Rad onc who was actually very informative. He suggested that I talk with the Med onc, a Genetic Counselor for BRCA testing, and a BS before doing any TX to discuss Mastectomy because I had higher risk factors/family history, and it might be in my best interest to consider. He also explained that if I start TX with my implants in, it would be very complicated to have any reconstruction later should I have a recurrence and need a Mast (not to mention additional pain/disfigurement caused by the implants.)

The Med onc I was sent to ended up being a joke - so I've requested to see someone else and also a 2nd opinion outside of my med group. Approvals for both have been taking so long, held up by insurance and med group - so fast fwd to where I am now. I'm about 6 wks past original surgery and researching/contemplating Mast without much direct guidance from Drs because I can't get in quickly enough to talk to any of them. I did meet with the genetic counselor last week and am awaiting results of the testing. I really think Mast is the route I am going to take… it doesn't make sense to me to start RADS and HT if my risk of recurrence is so high. Not to mention the side effects of both. At the same time, I'm terrified of the emotional part of having the Mast.

I just had a recheck mammo yesterday to see if the surgeon got all of the micro calcs as it is - and the tech didn't sound very positive. I should have results in a few more days. I am also seeing a new Med onc on Thursday, hoping to get her opinion on what to do, as well as an appointment at COH in LA with the BS to get an outside opinion next Friday.

That's my story - now I'm just drained, afraid, frustrated, and living in limbo with no guidance on the best plan for me. If I wanted to start RADS at all, I'd have to do it ASAP - but I just don't know what I should do. I am so thankful for this site and all those who have shared their stories and info - this has been my strongest resource for the past 8 months!

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  • solfeo
    solfeo Member Posts: 838
    edited May 2016

    Hi MoniW and welcome! What a roller coaster, huh? My circumstances were different and I don't have a lot of specific knowledge about DCIS, but I didn't want your post to go unanswered. Hopefully bumping it up will bring more responses.

    I did have the bilateral mastectomy although my diagnosis didn't warrant it. I had a long history of benign problems and biopsies that I just didn't want to deal with anymore going forward. I can't speak for anyone else, but for me being 100% comfortable with my decision saved me from pretty much any emotional repercussions related to the mastectomy. There are plenty of other emotions that come with a cancer dx, but missing my boobs is not one of them. In fact, the longer I go without them the less interest I have even in reconstruction. There was some mild pressure from the surgeons to do immediate reconstruction, but I'm glad I waited. For one thing, if I do ever get reconstruction I'll be going a lot smaller than I thought I would early on, so it was good to live without them to find out how I would adjust. Might not reconstruct at all since I've been pretty comfortable living flat.

    Good luck with your test results and finding the right team. It all gets easier once you know enough to settle into your decisions. My only advice is that when you do decide how to proceed, try not to second guess yourself. Never look back, and always look forward!


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  • april485
    april485 Member Posts: 3,257
    edited May 2016

    Hi MoniW, so sorry to meet you on this board but hopefully we will be a great resource for you moving forward. I want to echo solfeo on the advice of never second guessing yourself once you decide what is best for you in terms of treatment. You have the added stress of having lost a first degree relative to this ugly disease so it will (and should) color your decision but hopefully, with or without medical expert guidance, you can decide what is best for you personally and what you can live with in terms of risk.

    I personally was very torn initially and was thinking mastectomy but after a long thought process decided to go with a lumpectomy. I had to have two of them because my margin was very narrow and I was in a clinical trial for partial breast rads, 2x a day for 5 days and it required a minimum of 2 (or 3, can't remember) mm all around and one of mine was <1mm so back under I went.

    Do I regret my decision to throw everything at my BC? No. I cannot and will not look back. I pray the same for you. Hugs!

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  • MoniW
    MoniW Member Posts: 7
    edited May 2016

    Thank you so much for the replies solfeo and april485! Funny, I JUST figured out there were replies to my post - sorry a little late in reading them! A lot has happened since my original post. I saw a 'better' MedOnc for a 2nd opinion and she seemed great, totally agreed that there were too many unfortunate pieces to my situation. She said MX would probably end up being my best choice, but wanted to see results from Gen testing first. Well.... Gen test results all came back negative, which is super awesome news for my 7 sisters and my 3 kids! However, it still didn't change my current situation. MedOnc had a totally different tune when I went back to her... now she is saying that a MX would be overreacting and that I needed to go home and think it through. WHAT?! She had me totally second guessing myself, making the last two weeks horrible. So, I moved forward and saw that other SurgOnc at COH and she was absolutely amazing! She explained things to me so well, but still said the decision was entirely up to me. Bottom line now: I'm certain that doing the MX is going to be the best thing for me. I won't have to worry about the RAD causing problems/deformity because of my implants, I won't have to worry about Tamoxifen increasing my risk of Uterine Cancer because of my Adenomyosis, and I won't be worried about recurrence, constantly looking over my shoulder. You are both absolutely right - I cannot second guess myself now!! Also, we *might* have been able to straighten out insurance to cover surgery at COH with the SurgOnc I really liked.... so fingers crossed and lots of prayers that will be the case!

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  • Alh
    Alh Member Posts: 4
    edited May 2016

    Hi there

    I also was diagnosed with dcis, 5 yrs ago. Did lumpectomy and radiation. I declined the tamoxifen as well. They still ask every year though! Last year, at recheck, I learned I had not been genetically tested (for some reason I thought I had been and was negative) had to wait 8 months for an appointment (they were awesome though!) A month later my results were positive for Brca2 and Chek2, both risk factors. A friend of mine has had bc twice, under age 40, and she also has chek2. Since I have a huge history in family as well, they offered me this panel of like 26 screenings or so, not just brca. Strangely, the tech at the breast care center doing mammogram had never heard of she said. I am getting a mastectomy as well, though pretty nervous. Meeting w my second surgeon today, had to wait months for appointment w first doctors.

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  • MoniW
    MoniW Member Posts: 7
    edited June 2016

    Alh, I'm so sorry you're in this boat too! For me personally, I would choose the mastectomy with the family history plus the positive Brca test... not to mention you've already had DCIS. It's not an easy decision to make, that's for sure. I never thought it would be this hard! I always used to say that if I ever had any type of bc I would do the mastectomy in a heartbeat. Ha! Not so easy when it's actually happening to you, right? For me it was an even harder decision because I'm told over and over again that DCIS doesn't usually warrant the surgery... but I just couldn't wrap my head around radiation being any better, and with not being able to take Tamoxifen I didn't have a lot of other options. I'm glad you got the genetic testing - it can be such a crucial component, and now you'll know. I'd love to hear how the rest of your appts go - it took me months as well just to get to this point, so here's to hoping the rest is easier for us both!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2016

    MoniW,

    Just a few thoughts....

    Radiation is a walk in the park compared to chemo..... But, of course, you don't need chemo so that's a wash for you.

    If you don't want to take Tamoxifen because of some pre-existing conditions, you can always take an AI. A lot of women complain about both Tamoxifen and the AIs, but I've been on Aromasin for over a year and it's not so bad (some hot flashes, but what you'd expect). And, yes, I'm premenopausal, but my oncologist has solved that problem with an ovulation suppressor (Zoladex).

    In any case, best wishes to you!

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