After 2 lumpectomies a mastectomy is recommended

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Hi, I was dx with DCIS on December 29th.  I have since had a lumpectomy on the 2nd of February and a reincisional lumpectomy on the 14th of this month.  Now the surgeon is saying I still have an area of DCIS that is unclean.  I also have a 1/3 of a mm of invasive tissue seen.  Now he is saying I need a mastectomy.   I am feeling mentally tired.  I am 42 years old with no hx of breast cancer in my family.  I was told at the beginning that they caught this early on mammogram and that it was small.  It does not seem that way to me anymore now that I have been through 2 surgeries and now a mastectomy is pending.  I am seeing my surgeon on Tuesday and he is referring me to a plastic surgeon.  Now I feel if I have to have a mastectomy then I would do a bilateral.  I still haven't seen my oncologist.  I will see him on the 2nd of March.  Should I see him before I elect to do the mastectomy?  Should I get another opinion?  Help!!  Any advice would be appreciated from others who have been this route would be helpful.  How bad is the recovery from mastectomy?  I am really overwhelmed.  Thanks!

Comments

  • in_cognito
    in_cognito Member Posts: 429
    edited February 2011

    I would definitely get other opinions just for peace of mind.  I had a similar situation.  I had a lumpectomy and re-excision.  They were not 100% that they got it all, and any imaging done would not have shown anything that small.  I eventually went back for a BMX and have no regrets.  I am 38 with a 3 year old and 1 year old so the recovery for me was a bit different - I had to have someone at home with me the first 3 weeks as I had lifting restrictions.  How old is your child?  I had immediate reconstruction.  I spent 2 nights in the hospital and when I got home, I had to sleep upright for a few days.  A week out, I had more range of motion in my arms.  It's been 4 months now, and I feel back to normal, my new normal. 

    My choices that were presented to me after the re-excision were a mastectomy, or third re-excision, or just leave as is and monitor.  I chose a BMX.  It is a very personal decision.   I did get a few different opinions, but in the end, it is your own decision.  Good luck!

  • mom2one
    mom2one Member Posts: 138
    edited February 2011

    Thank you so much for responding.  I have felt really depressed since the news of the unclean margins.  You have made me feel better about the BMX.  I hope to know more on Tuesday.  They said I am stage 1 now and I know I am HER2+.  0 lymph node involvement. 

  • Pessa
    Pessa Member Posts: 519
    edited February 2011

    I had a lumpectomy with poor margins.  I decided to have a bilat mastectomy (2 separate surgeries, no reconstruction) because they found 8 cm of DCIS during the lumpectomy about which they were unaware, along with the .9 cm IDC.  The DCIS was not seen on mammogram, US, MRI.  I realized that there would be no way to follow things in the future, as no test would find anything until it was invasive.  I decided to be aggressive and had chemo as well as the MXs.  I was back at work (mostly a desk job) 2 weeks after each mx.  I have 2 teenagers (single mother) so didn't have to do lifting for a while.  Recovery was smooth.  No significant pain (only needed Tylenol) and no significant interference with lifestyle (but, again, I had the surgeries a few months apart).

    Good lluck!

  • mom2one
    mom2one Member Posts: 138
    edited February 2011

    Thank you for your response.  I am now debating if I want reconstruction.  I have been reading alot about it and don't know what to do.  I am definitely tired of surgery.  Thanks for your input.

  • Kymn
    Kymn Member Posts: 999
    edited February 2011

    Hi I too have just had second lumpectomy.I am 41 and a mother of two 14 and 8. I just had my second one on friday and am so scared that the margins will not be clean again. I am struggling with what to do if that is the case also. I was diagnosed jan 10 the tumor was 1.8 but they found more DCIS as well when they went in which did not show up on the mamogram and ultrasound. I go for an MRI on March 14 they couldnt get me in any sooner and I have to travel to another city to get this.I get a bone scan next week and apparently there are some abnormal finding in my cervix too which I now have to get tested. I was told there was no node involvment but there were traces (microscopic) in one node which to me would mean there is involvment but i guess it wasnt enough to classify as that so chemo is in my future starting in the next few weeks. I am so freaked out and overwhelmed right now. I dont know my stage or if I am positive or negative yet as those tests have not come back so I feel like I am just sitting in limbo. If I have to have a masectomy i will do both and want reconstruction for sure am hoping if that is the case I can have a nipple,skin sparing masectomy as I dont want to have barbie boobs this is all so frustrating. Well hope you are all having a better sunday than me i feel a pity party coming along better go have some coffee and try to lock the doors so they cant get in.

    Love and strength to you all

    Kymn

  • mom2one
    mom2one Member Posts: 138
    edited February 2011

    Kymn:  I know how you feel about wanting to have a pity party.  I am trying to drag myself out of this mood.  I wish you good luck and hope you keep me posted on your journey.  I know I will not be able to have nipple sparing surgery since my DCIS is extremely close to the nipple on the left.  I am hoping to get more information Tuesday.  I think chemo and Herceptin are both in my future, but I have to get done with all the surgeries first.  Love and strength back.  Mom2one

  • Kymn
    Kymn Member Posts: 999
    edited February 2011

    Mom2one I sure hope I am done with surgeries I guess after my MRI i will know more waiting waiting waiting sigh

  • mdg
    mdg Member Posts: 3,571
    edited February 2011

    I would get a second opinion just to compare what surgeons say.  I had a lumpectomy and SNB in December and then had a BLMX on 1/27.  I am did immediate reconstruction with tissue expanders.  Quite honestly I have done very well since my BLMX.  It was not as bad as I thought it would be.  I am 45 and very healthy, thin and workout a lot so being in good health and shape I think works to my advantage.  I am back to driving and doing most household things except lifting anything over 5 lbs (my PS won't let me do that yet).  I hope to be back to teaching aerobics at the beginning of April if all goes well with my first 2 chemo sessions.  I did do a BLMX eventhough there was no cancer on the other side.  I did that because I wanted to be a bit bigger (I was small chested before) and I wanted to be symmetrical.  I also did not want to get BC in the other side...my surgeons kept telling me I was twice as likely to get it on the other side now....

    It is hard to make this decision.  Definately talk through it with your surgeon.  Try a second opinion.  Sometimes a different surgeon just says things a different way that makes you understand it differently and that can make the decisioin easier.  Feel free to PM if you have questions.  Good luck!

  • ChrissyMH
    ChrissyMH Member Posts: 64
    edited February 2011

    JBinOK,

    Gosh - you've lived what I most feared.  Recurrence 1 year after lumpectomy.  So despite my lumpectomy in Oct. I'm going to have BLMX/no reconstruction in March.  That's so GOOD to hear that 4 week out you feel 100% back-to-normal.  How much pain did you have?  How many drains?  Were they painful?  Hard to care for?  How much weight can you lift now?  When could you drive?  Run on a treadmill?  Sorry for so many questions, but you are SO where I want to be at some point after, say, April Fools Day Cool!  Thanks for any info..

  • jteach
    jteach Member Posts: 199
    edited February 2011

    Dear mom2one (and kymn, too)

    I was originally diagnosed in April of 2009.  I was told that I was probably stage 1 and that was good.  After dirty margins ,2 lumpectomies and lymph node involvement I went to stage 2b and needed a mastectomy.

    I was devastated.   Fear, body mutilation (that's how it felt to me) and fetal position from bad reactions to chemo and rads kept me from teaching first grade and I was really depressed.

    Guess what?  Here I am , not even 2 years after diagnosis and i've come through the other end of the dark tunnel.  I'm rebuilt, both physically and emotionally.  I'm ready to take on anything.

    You can do this.  Keep your eye on the prize, which is to live life to the fullest every day with your loved ones.  The worst will soon be over.  Please pm me if you need to talk.  Good luck!!!!!

    (((((HUGS))))) Janice 

  • Kymn
    Kymn Member Posts: 999
    edited February 2011

    Janice, thank you for that post, I needed that today {{{{{hugs to you}}}}}}

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