Mastectomy for DCIS

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zoegr
zoegr Member Posts: 113

I'm wondering which one of you have chosen Mastectomy and not Lumpectomy for DCIS and what are the reasons of your decision.

Comments

  • sunnyhou
    sunnyhou Member Posts: 169
    edited December 2009

    I chose double mastectomy because of my age. (38). I was told there was a high chance it would come back. Also did not want radiation or tamaxofin. I have no regrets. I have no feeling in my breasts but don't care. I am almost done with reconstruction and I am so thankful for the options that are available today.

  • pk0199
    pk0199 Member Posts: 586
    edited December 2009

    Zoe- I chose lumpectomy and rads as I didn't feel like I was ready to part with my breasts. I don't define myself by them but feel attached to them so wanted to keep them. If I have a recurrence though, I think I will be ready to part with them. I also feel for myself that to take both breasts off was too radical as there is a very good chance that there will be no recurrence. Best of luck to you with your decision, ask lots of questions and don't let anyone rush you or talk you into something you aren't sure of.

  • baywatcher
    baywatcher Member Posts: 532
    edited December 2009

    I had extensive DCIS so I wasn't offered a lumpectomy.

    I would have rather have had a lumpectomy. I wish I would have tried it first.

    A mastectomy cannot be reversed. Think long and hard before you choose mastectomy.

  • geebung
    geebung Member Posts: 1,851
    edited December 2009

    I had a lumpectomy first but the margins were not clear and, like baywatcher, the DCIS was extensive and grades 2 & 3. My surgeon strongly advised a mastectomy. I didn't want radiation either and am not on tamoxifen. I am nearly 3 years past dx and all is well.

    Best wishes with your decision and I hope it all goes as smoothly as possible.

  • jane1254
    jane1254 Member Posts: 62
    edited December 2009

    I had Rt. Mast. 4 days ago for DCIS due to extensive area.  I attempted a lumpectomy, but margins were not clean.  Pathology was good after Mast. No regrets.  I did not want Rad. even if it had been an option.  I also had a reduction on healthy breast at the same time as Mast. and Recon.

  • prayrv
    prayrv Member Posts: 941
    edited December 2009

    I had extensive DCIS, I also was not given a choice for lumpectomy.  In the end, it was a good decision FOR ME, as there was 8mm IDC in my pathology. 

    Good luck with your decision, everyone is different, just as everyone's dx is different.

    Trish

  • roseg
    roseg Member Posts: 3,133
    edited December 2009

    I had DCIS in two different places. The surgeon told me that the very first appointment that if it was in two places that mastectomy would be "the" option. 

    The minimum that they'll remove is a golf-balled sized chunk of tissue. I'm small chested; two of those was going to be really disfiguring.  

  • Lovegolf
    Lovegolf Member Posts: 513
    edited December 2009

    I had 3/4 margins after lump. still DCIS.  I felt if just maybe 1 margin might have tried again. I decided on bital Mx and had it 5/1.  I was told I woould have 30% chance of it recurring or 1% with Mx.....I did the math and the decision was easy.  My nodes were clear so no chemo and no radiation which was also a big part of the decision.

    My path report after mx showed other areas of DCIS that had not been caught on MRI or mammogram so I know I made the call.  This is you choice with your body and do what is right for you. Everyone must make the call....this part of it is the worst!!!!The waiting until you what you are goig to do seems forever.  Breathe....

  • olivia218
    olivia218 Member Posts: 257
    edited December 2009

    How long after diagnosis did you have the mastectomy? I found out November 5th and still have not had surgery.  I went to the plastic surgeon today and discussed a DIEP free flap.  Has anyone had that procedure? 

  • firstmate
    firstmate Member Posts: 410
    edited December 2009

    baywatcher --- I agree with you totally.  I was told my DCIS was multi-focal and I must have mastectomy.  So, I did.  It turned out that all of the DCIS was gotten with the stereotactic biopsy and I just had LCIS.  I wish I had made the doctor do a biopsy/lumpectomy against his advice.  If I had done this, I would have both my breasts, be taking Tamoxifin, and not have to deal with this extensive reconstruction.

  • TOB
    TOB Member Posts: 74
    edited December 2009

    I only chose unilateral mastectomy/DIEP after 2 lumpectomies failed to achieve clear margins and supposedly showed a second large area of DCIS.  MX revealed that they actually had gotten most of the DCIS they knew about, but found a third small area that was previously unknown.  Given my druthers, I would have chosen lumectomy and rads, but that is just me.  I know that many women choose double mastectomy with DCIS, but I am not willing to sacrifice my healthy breast unless and until I have to and Iam hoping that I will never have to cross that bridge.  Again, this is a personal choce that each woman has to make for herself. 

  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited December 2009

    I agree that this is such a personal choice and two women with exactly the same size and type of cancer can make two completely different decisions and still have it be the right choice for them.

    That said, I personally do not plan to do a mastectomy unless my re-excision still cannot produce clean margins (so far, I had a lumpectomy with an 8cm x 7cm x 5cm chunk removed; 2/4 margins clear). 

    Weirdly, even though my DCIS is a large area that pretty much covered half my breast, my surgeon has not suggested that I have a mastectomy. I'm sure he will if he's not able to get clear margins the second time. I *think* I'm emotionally okay with a mastectomy if he is able to do an areola-sparing one. (I'm okay with a flat chest and probably wouldn't even get implants, but a tattooed areola isn't for me... again, totally personal decision!)

    I've already had a scare with my "good" breast... 7mm suspicious mass that was biopsied on Thursday. I am praying that it turns out benign or that it's something that can also be removed with lumpectomy. If it's benign, I absolutely wouldn't consider a prophylactic mastectomy. I've figured out WHY I got DCIS and have been making changes (that I will keep doing for the rest of my life) to prevent it from happening again. 

  • desdemona222b
    desdemona222b Member Posts: 776
    edited December 2009

    Julia -

    Wow - you have been through the mill in the past few weeks.  When did this second mass come up on the good breast?

    I've seen rebuilt nipples - a friend of mine never had hers tatooed.  They created it with muscle tissue, and it looked pretty darn good to me.

  • olivia218
    olivia218 Member Posts: 257
    edited December 2009

    I just spoke to the surgeon's office and they told me my surgery would be Feb 5th. I was shocked about the wait because last time I saw the surgeon he had a sense of urgency.  She explained it is hard to get all the surgeons lined up together on the same day for that long of a procedure. At times I feel like I am a pingpong ball bounced between Dr's. 

  • zoegr
    zoegr Member Posts: 113
    edited December 2009

    Olivia,

    I had the same problem. I have been diagnosed middle of Nov and my surgery will be around Christmas and New Years Eve. The doctors assured me that cancer will not spread suddenly. It grows really slow. Maybe i have this around 5 years, some weeks will not do any difference.

  • feh
    feh Member Posts: 63
    edited January 2011
    olivia218 -- I'm just wondering....given what you have said, and also that your surgery is not happening soon, if you have, or if you might, have your pathology slides/samples sent to another pathologist for another look.  This may give you more information.  On the outside chance that there would be disagreement, then a third opinion would be the option.  I know Duke University Medical pathology is mighty good.  If this would only make matters more insane for you, then just forget about this post.  All the best to you.
  • robinlbe
    robinlbe Member Posts: 585
    edited December 2009

    I wasn't given a choice....because my disease is multi-focal, a lumpectomy with rads = out of the question.

  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited December 2009
    Julia -

    Wow - you have been through the mill in the past few weeks. When did this second mass come up on the good breast?

    desdemona, I had missed this -- and I've missed you! It's good to see your name here again! This mass was seen on my pre-surgery MRI.

    I found out Thursday the 7mm mass is benign. Yehaa! But, I still have extensive microcalcifications so I'll have to do a mastectomy on the previously operated-on breast. My BS claims he absolutely can do it as nipple/areola-sparing, which as I had said before is my biggest concern, but it's good to know there's much they can do to make it look realistic. 

  • klml4
    klml4 Member Posts: 60
    edited December 2009

    I had bilateral mx on December 4th.  I was diagnosed with DCIS August 17th.  I had a lumpectomy in September and they didnt get clear margins.  I had a reexcision in October that still didnt get clear margins.  What I was actually told was "there is still one area with a lot of cancer left in it"  At first I decided to do a 3rd lump, but after thinking about it a little more I decided to do a bilat mx.  I am 37, my mother was 35 when she was diagnosed with breast cancer and died when she was 41, he mother was 47 when she dies from breast cancer--so because of the strong family history, and even though they say I dont carry the BRCA 1 or 2 gene, I figured this was the best thing for me to do.  I was very surprised with how many people told me after that they were so happy that I chose to do this, because they were all so worried about me trying a 3rd lumpectomy. 

    If the lumpectomy worked the first, or even the second time, I would have just done that, radiation and then tamoxifen--but since they didnt, this is the route I chose.  Good Luck to you!!!

  • paddington97
    paddington97 Member Posts: 5
    edited December 2009

    This is my 1st post.  I turn 35 this January.  I found a lump 4 weeks ago.  My husband insisted that I have it checked out.  Long story short, two masses behind my left nipple, DCIS, stage O.  Due the size of my breasts 36AA and the location of the lumps I am going with a masectomy, with reconstruction plus augmentation of the good side.  A lumpectomy on the two would leave me too disfigured. 

    Surgery is scheduled for the 29th of Dec.   A new chapter in my life has begun.

  • neversurrender
    neversurrender Member Posts: 508
    edited December 2009

    I was diagnosed Nov 12, DCIS grade 3.  It was recommended that I have a mastectomy due to amount and grade and comedo necrosis.  I will also have a SNB. 

    I decided to do a BMX as I think it would drive me crazy through the years, waiting for it to appear in 2nd breast. 

  • cimiche
    cimiche Member Posts: 16
    edited December 2009

    I am 41 and was also diagnosed with DCIS, grade 3, estrogen +, and do not have the brca 1 or 2, based on testing about 2 years ago.  It was found on my mammogram Dec 10, stereostatic biopsy Dec 18, results Dec 21.  My mom had breast cancer at my same age.  Her sister also had breast cancer at about age 50.  I am opting for the double mx, but want the DIEP flap surgery.  In my area, there is only one surgeon who does the procedure bilaterally.  Unfortunately, we cannot coordinate my breast surgeon and the plastic in the same hospital, so I will have to do the procedure in two separate procedures.  Question about tissue expanders- is this necessary?  Since the plastic surgeon does not work in my breast surgeon's hospital, they cannot be put in at the time of the mx.  I am quite large breasted and dense, and had a reduction about 20 years ago.  Also, how much time should I realistically allow off work for both procedures?  As of now, it appears that it has not spread to they lymph nodes, and the surgeon will evaluate the sentinal nodes during the surgery.  Thanks...

  • LauraM
    LauraM Member Posts: 251
    edited December 2009

    This is my first post.  I was diagnosed with DCIS - Comedo High Grade on 11/13/09 and underwent a lumpectomy on 11/30.  The surgeon took out 4.5 cm of DCIS and found a .8cm of invasive intraductal carcinoma in the middle.  Out of the 20 blocks they took out to check the margins of the DCIS, only 4 out of 20 had clear margins.   My surgeon wants to go back in for a second lumpectomy and she believes she can get clear margins.  She will also need to take out a lymph nodes since I they found the invasive part (which was removed with clear margins).   I went for a second opinion at Sloane Kettering and they didn't think that my surgeon would be able to get it all and they recommend a mastectomy.  I went to the plastic surgeon and he recommended a double mastectomy.  So I am in the same boat as you!  This is the hardest decision I have had to make in my life!  I hope for a peaceful decision for both of us.

  • RegulJ
    RegulJ Member Posts: 244
    edited December 2009

    My reasons for going with mastectomy:

    I am only a B cup

    My tumor was 5.3x.3.2cm in size with a high grade.

    I had 3 positive nodes(found that at surgery)

  • Nedeza
    Nedeza Member Posts: 666
    edited December 2009

    I chose to have a unilat. Mx w/ immediate recon. after being diagnosed with DCIS last summer.  Mine was mulitifocal & was "scattered" in different quadrants of my right breast.  I was given the option to do re-excision lumpectomy followed with radiation OR do the simple MX.  My surgeon did inform me that by doing the re-excision there would be  a chance that not all the atypical cells may be removed & the chances of DCIS coming back & evolving into something more invasive & aggressive is higher.  Well...that did it!  I was told after my MX that she was extremely happy that I had made the right choice!  I am 49 & still have young children. After researching, DH & I knew "we" made a right decision too!  Just as Crunchypoodlemama said...I agree that we may have the same diagnosis but we all have our options. 

    As far as going through this BC journey...I am post exchange surgery by 4 weeks.  I had a single MX & augmentation to my healthy breast.  I am now waiting to have a lift on my aug. side & eventually have a "fipple" placed on my new "foob" (MX).

    NAE

  • changing_woman
    changing_woman Member Posts: 23
    edited December 2009

    I am small breasted so lumpectomies on me take a lot. I had one lumpect. but no clear margins so had the mast altho she offered another lump. Felt that I did not want lump. after lump.. Turned out good as there was much more DCIS than shown on mamms (MRi did pick it up tho)

    Had MRI on both breasts to decide if I wanted bilateral. Lt one clean, so went for one mast on Rt. If it occurs in Lt, then I will get a mast on that side too.

    Radiation makes it difficult to do reconstruction later.

    Good luck!

  • Nedeza
    Nedeza Member Posts: 666
    edited December 2009

    I agree exactly changing_wo...!  After my initial lumpectomy, my doctor said she found more DCIS than shown on the mammogram....& yes, I, also, was told it is difficult to reconstruct on a radiated beast.

    NAE

  • kittycat
    kittycat Member Posts: 2,144
    edited December 2009

    I had DCIS on the right side.  I chose a bilateral mastectomy, mainly so I wouldn't have to worry about what might pop up later.  Plus, I tested positive for the BRCA1 gene mutation.  That solidified my decision! 

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