DCIS and Mastectomy?

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  • HopefulFuture
    HopefulFuture Member Posts: 54
    edited May 2012

    Bellamarie - I remember what it was like the day before my bilateral mastectomy.  What helped me was to write a list of the top reasons why I chose mastectomy with reconstruction vs. rads and tamox.  It ended up being 10 reasons, and I found myself reading, re-reading and even editing them after the surgery was complete.  It personally really helped me reinforce why it was the best choice for me.  I had moments of doubt immediately after the surgery. In fact, I woke up thinking "what the $#%# have I done!!"  But reading those reasons over and over helped to calm my overactive mind.

    I wish you peace, courage and strength as you go into the surgery.  And know that we're here if you ever need to ask questions.  Or, if you ever just want to talk, feel free to PM me.  Good luck tomorrow.  I'll be sending positive vibes for you.  

    Ourfamily22584 - I am definitely pleased with my decision.  Once that decision is made, there's no going back, so it's best to think long and hard about it.  For me, it was an excruciating decision process, but now, 10 months and 3 surgeries later, I still feel good about my choice and I wouldn't have done it any other way. If you want to greatly reduce your risk and the need to forever look over your shoulder, this is a good choice.  Many doctors or people I meet say they would have done the same thing.  It's no walk in the park, that's for sure, and it will forever change who you are.  I also agree with Kristi that expectations should not be set too high.  I chose a wonderful PS in Santa Monica, CA and did the expander/implant/fat grafting route.  I am extremely pleased with my results now, but the fat grafting helped a great deal.  I'm just hoping I can hold on to the fat, as the extra layer on top of my implants makes things look "normal." again.  Choosing the right PS is critical... reconstruction is an art.

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  • jackier
    jackier Member Posts: 10
    edited May 2012

    Hi there ladies!  I am 49, with 3 kids.  I was posting in the "DCIS and overwhelmed" anf found this forum.    Interesting type of opinions. I am in the same decision mode, however, I think I want to start first with having another re-excision (lumpectomy). I hope I am getting the medical terms right!  I was diagnosed a month or so ago after having an incisional biopsy, with DCIS Stage 0, Grade 1.. 6cm in my left breast and very close to the nipple area.  Another area in that same breast that BS sampled shows extensive hyperplasia but no DCIS.  BS talked about lumpectomy, 6 weeks rads and possible tamoxifen for 5 years...    and also about MX..It is a tough decision as you want to take care of it and not worry about it again, yet, by having an MX is a major surgery ..  I am going for the path of having the lumpectomy and the rest of the process, because having a MX is just too big of a deal as a first step, in my own personal opinion.   I guess it is comes back that there is more DCIS, then MX may be the option as obviously don't want to be going and coming with this one.   It is a tough one and each one's perspective is different so i would say, even at these times, do what you feel best with as it is you who will have to handle all of this.     We all have our methods of reasoning and understanding.  It is not an easy situation to be with and just by having DCIS and then having to decide "what to do", can be overwhelming.   

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  • speech529
    speech529 Member Posts: 337
    edited May 2012

    Two years ago I had a unilateral nipple saring MX with immediate reconstruction to treat DCIS grade 3 with comedonecrosis. I had a lumpectomy but needed more excision plus rads....I did not want radiation. I don't take tamoxifen, either.

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  • Beth11
    Beth11 Member Posts: 9
    edited June 2012

    Hi speech529,

    I have the same cancer and grade as you. I had a lumpectomy to determine what it was since the original diagnosis wasn't completely clear. I am now faced with radiation and tamoxaphin or I guess I could do a MX with reconstruction. I would most likely have a BMX since I would have to have a reduction to the other breast and the cosmetic result wouldn't be as good for me, as well as the worry of more cancer in the left breast down the road. I am 44 yrs old with a 6 yr. old son and wondered if you would share some of your reasoning for the tx. you decided on. I have reservations about radiation and hormones and am just looking for some feedback if your comfortable with that, if not that is totally fine too.

    Thank you

    beth11

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  • alexandria58
    alexandria58 Member Posts: 1,588
    edited June 2012

    I had a BMX, no recon.  Pre-surgery was the hardest.  First couple months, it bothered me some.  Now, a little over a year out, ery ery pleased with my decision. No regrets.

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  • Dooley45
    Dooley45 Member Posts: 17
    edited June 2012

    Although my DCIS was grade 3, and I opted for UMX, I would have made the same decision for grade 1 or 2.

      I think for all of us it is hard  when the MDs are required to give us more than one option ( each one with pros and cons).

    As we read all the notes posted on this website, and after doing the hours of research that we all do, the bottom line is...an educated decision plus that old gut feeling will help make the "right" decision.

    Now that I'm at the point of having final implants done I can say I have no regrets about my decision.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited July 2012

    Hello, all. I had a BMX in Dec. Because of my family history, I said if I am doing a mastectomy, it going to be a BMX. DCIS, Stage 0. grade 3, on right side. On left a spot of what they thought was a small DCIS. So they agreed to a BMX. Good thing, because In my left breast tissue, they found a 1.6 cm IDC. Stage 1 grade 3, Her2 positive. Didn't show up on mammoghrapy, the little spot on the left was calcifications. So chemo for me just finished two weeks ago. Glad I made the decision to do a BMX. Don't mean to scare anyone, but it worked for me.

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  • Ami1026
    Ami1026 Member Posts: 32
    edited June 2012

    Hi - i had Umx for DCIS just a week and half ago.  I don't regret it, or wonder if I should have just done lumpectomy.  My Mom died from BC when she was 44 (I was 15), and when I got the dx of BC (I'm 37!) I was not willing to take any chances.  I know that stats say lx w/rad is appropriate treatment, but for me and my anxiety, mx was the way to go.  Yes, mx is major surgery.  In my mind though, one major surgery was better than the prospect of perhaps having to go back once or twice again if the margins weren't clear. Everyone deals with surgery differently, but it was much much easier than I had worked myself up to believe. I'm back to normal already (well, normal as can be with a missing boob).  Adjusting emotionally is difficult of course but I choose to look forward to completed reconstruction (TE with future implant and lift/augmentation on remaining breast.)

    To be completely honest, the only thing I question at this point is not having both breasts removed.  I didn't think I could handle it emotionally, but now I feel like at some point in the future I'll have to face that demon of my remaining breast.

    Just my own personal experience!

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  • jackier
    jackier Member Posts: 10
    edited June 2012

    I just came back from a second opinion with a breast surgeon.  My first BS told me that after the excisional biopsy, DCIS and some LCIS was found and that I needed to go again for a lumpectomy, then radiation and most likely Tamoxifen.   Even thought my DCIS was less than 0.5 mm  so really small. Not being too convinced with this diagnosis, we opted the route for a second opinion.   This other BS who is the head of the breast surgery board and also a professional at a medical university with 20 years experience, looked at all my films, reports, etc. and in summary, radiation would not make a major dent since my DCIS was so smaill, but maybe Tamoxifen to decrease the risk in having BC in 20 years from now.   Surgery?  They want to do another really detailed mamogram to see if I really need to have surgery or not. WHAT A DIFFERENCE....    in opinion and it sort of coincides with what I have been reading..  We may be overtreated and going to war when it is not!    Getting out of radiation, for me, and possible, surgery, is a major dent in my treatment.    I can imagine myself by now already having had the second surgery and starting radiation, if I hadn't gone for a second opinion.  So all of you out there, if you are unsure, it never hurts to go to a second opinion and "validate" the first diagnosis.   Good luck!  DCIS is not a life threatening condition so we can take our time in going for second opinions and getting more knowledge in how to reduce risk. I am not saying that DCIS is not a risk already.. It is, and a lifetime one, that could spur in 20 years from now.

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited June 2012
    big red flag on " They want to do another really detailed mammogram to see if I really need to have surgery or not." .... would love to know the difference between a detailed and a regular mammogram. Regardless... I saw 4 breast surgeons. One was the head breast surgeon at my local hospital (Dr. Ward, greenwich, ct), the other was the head breast surgeon at memorial sloan kettering (Monica Morrow) and the third was a well known breast surgeon in NY (Dr. Ashikari) and the fourth was also at memorial sloan kettering (Dr. Heerdt). All four had very different opinions on treatment, on tests that needed to be done, on the evaluation of the biopsies, and on the mammograms themselves. I walked into my BMX knowing... I had DCIS on my right breast and pre DCIS on my left. An MRI also showed a highly suspicious mass behind my DCIS. my final pathology report showed no mass behind my DCIS and DCIS in both breasts as well as LCIS and pre LCIS. at this point, all I have to say is I am sooooo glad I had my BMX. I listened to my gut and my gut was spot on!   
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  • howhm02l
    howhm02l Member Posts: 147
    edited June 2012

    It has been great reading all your posts.  I was diagnosed with DCIS yesterday, intermediate grade, in the left breast.  It is a large area, biggest measurement is 6cm - found on routine MRI scan, and was not there on my mammogram last September.

    I have my initial meeting with surgeon on Tuesday, and I know that I want BMX.  My mother was diagnosed at 34, and her sister was 42.  I'm waiting on BRCA results.  I am 40 and have 2 small children.  I decided years ago that I would have BMX at the first hint of BC. 

    You have all been very helpful and empowering.

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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2012

    Good luck with your journey, howhm02l.  Your decisions sound straight-forward which will simplify your process quite a bit.  I had bilateral mastectomy last Tuesday and am recovering well.  From what I hear, there will still be plenty of rough days in the weeks ahead, but those of us with small children don't mind trading rough days for a great prognosis!  I am 42 and my daughter is 4.  Since I returned from New Orleans where I had my surgery and first stage of reconstruction, she has been taking such great care of me!  She slips into my room while I nap and rubs on my arm before tiptoeing back out -- what better medicine could there be???  Best of luck to you!

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  • howhm02l
    howhm02l Member Posts: 147
    edited June 2012

    LAStar - I also have a 4 year old daughter - she is amazing!  I so appreciate your kind words.

    I am glad to hear you are recovering well.  Enjoy your very helpful nurse!

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  • rosetx
    rosetx Member Posts: 121
    edited July 2012

    I chose BMX prophylactically for an extensive personal history of breast issues and family history of BC.  But the pathology report from surgery showed DCIS and extensive ADH and ALH both sides.  I have no regrets about the surgery.  My pathology was presented to the Tumor Review Board this week and they agreed that for me, this was a good decision.

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  • Mkelley30
    Mkelley30 Member Posts: 4
    edited July 2012

    I had Pafets disease on my right nipple 22 years ago and I underwent MX and nodal dissection. This April, my mammo showed a clustered group of micro calcifications . Biopsy showed DCIS low to medium grade. I talked it over with my surgeon and we opted for a MX on the left for several reasons: my breast tissue is very dense, there are larger calcifications in that breast, and there are hundreds of cysts which can obscure abnormal tissue. Also, Pagets often advances to a DCIS, so is this "new cancer", or did I develop it at the same time, but just showed up now. I did not want to worry about that in the future. I'm currently post surgery 1 month and filling up the expander. Oh well!

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    Hopefulfuture:  I am glad that you have made a decision that gave you peace.  I am still struggling with that decision. 

    I was diagnosised June 12, 2012 and am mortified that nothing has been done yet.  But, I am learning more about DCIS and know that I have time to make these decisions now.  However, I see a few people here who were diagnosised a year ago and just having surgery now.  Wasn't waiting this long super stressful?  I'm a bit nieve in this so far.  I thought diagnosised with breast cancer, straight to the operating room or chemo chair.  I really thought I have this all done and over with within 3 months and back to my life, but it's seems like it will be much more a part of my life than I expected.  Is that true?

     Thanks for whatever information anyone can share and God Bless You All!

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    LAStar Hello!  What a sweet story about your daughter, I love that.  I have a dog, or puppy really, and he seems to understand that I have something going on, he is much more gentle with me then he is with my boyfriend.  It's very interesting. 

     Anyway, still in the learning stages here, and as I said before, nieve.  I see that you had a lumpectomy and two months later a mastectomy, if you don't mind, can I ask why it ended up being the mastectomy?  

    I am so confussed really.  I was originally told I had .8 mm DCIS on my left, then they wanted the MRI, which showed a 5 cm something on my left, and something on my right.  I think I have good news about the right, I had a biopsey yesterday and the radiologist says he thinks, with some certainty that its a fibroadenoma - he seemed pretty happy about that.  That is really good news, but I had my mind set that if I had cancer in my right as well I was just going for the double mastectomy - I'm so afraid that if they didn't find it this time, it was me that found it, what if they don't find it if something develops later on.  So much to think about and I know, in the end, it has to be my decision.  Just information gathering now.

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  • LAstar
    LAstar Member Posts: 1,574
    edited July 2012

    I had mx because I could not get clear margins in the lumpectomy or re-excision. The MRI indicated that the dcis might be widespread, so we didn't try a 3rd time & opted for mx.

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  • Kd6blk
    Kd6blk Member Posts: 114
    edited July 2012

    Just a heads up that a clear MRI means nothing...I got one too. After my lumpectomy I had the bad kind of DCIS. The radiologist basically told me it was not fool proof. I just wanted to say that to the folks here who said theirs was clear and seemed to feel safe with that...I will never believe I am safe until I have a lumpectomy. Going for another one on Friday as they missed the chip in my right side and hoping it is nothing worse. Heading for a MX soon....

    Lisa

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012
    LAstar:  That you for the information, I am so blessed to have people so willing to be open and share THEIR experiences with this.  I guess I'm wondering if people regret attempting the lumpectomy, only to have to do the mastectomy in the end, or is it worth a shot to do the lumpectomy?  They are saying that my DCIS (according to the MRI) is 5 cm on my left.  Originally, I was told (from the Ultrasound) it was .8 mm.  Still gathering information UndecidedWink
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  • LAstar
    LAstar Member Posts: 1,574
    edited July 2012

    My lumpectomy & re-excision were minor surgeries with no complications & very little pain, and the recoveries were quite easy. If you want to avoid mx, I think it's worth a try. Then you will never wonder if a lump would have been enough.

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  • bluepearl
    bluepearl Member Posts: 961
    edited July 2012

    If you can avoid rads, all the better. I chose mastectomy. 1-2% chance of recurrence, less with tamoxifen. No chemo. Without rads, no side effects from that either. You can get reconstruction and have better breasts than before....plus a tummy tuck.

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  • alexandria58
    alexandria58 Member Posts: 1,588
    edited July 2012

    Actually, after my BMX for DCIS, the oncologist told me that the reduction in risk for BC from taking Tamoxifen wasn't worth the risk of the possible bad effects of Tamoxifen.  So no rads, no Tamoxifen.

    If you do decide on a MX, or BMX, you can also opt for no-reconstruction.  It's a viable option.  There's various discussions on this. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited July 2012

    alexandria58

    Yes, no Tomoxifen here either for the same reasons. 

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  • rosetx
    rosetx Member Posts: 121
    edited July 2012

    Tumor Review Board (post surgery) and BS felt that since I had BMX for DCIS I would not need Tamoxifen.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited July 2012

    If you have a UMX for DCIS only I think they usually will recommend Tamoxifen b/c of the remaining breast tissue on the other side...but it's been a while since I read up on DCIS only stuff so double check that info with your onc. 

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  • Hoya03mom
    Hoya03mom Member Posts: 135
    edited July 2012

    After 3 lumpectomies and they couldn't get clear margins and they found areas during the surgery that did not show up on MRI and having two sisters go through cancer ..not breast ...ovarian and apendicidal, I just decided to have BMX so hopefully I don't have to worry about it again. Md said if nodes are clear and no invasive found then no radiation or chemo or hormones. That is what I want for my July 11th birthday.



    19 days and counting...

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited July 2012

    Hoya, I hope you will get you birthday wish!

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    Heading to my Rad/Oncology appointment today, time to start seriously making some decisions.  If anyone has any suggestions about questions I should be asking, I would appreciate the input.  Thank everyone and have a beautiful day!

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    Good Luck, praying for you.

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