2 lumpectomies no clear margins

boromom
boromom Member Posts: 59
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with DCIS on Nov. 19. They did a stereo on two areas of my left breast.  One came back benign but the other was Grade 3 DCIS.  They felt is was very small - less than 1 cm but as we all know that is hard to tell with DCIS.  My surgeon and my radiologist both agreed it was small and a lumpectomy, radiation, and tamoxifen were the plan of attack.  Had my first lumpectomy on Dec. 9.  They did not get clear margins and felt that the area may be more like 2cm. She said none of my diagnostics showed this - mammo, biopsies, MRI.  She even used me as a case in a seminar - lucky me!!! I went back in this past Mon. the 21st for a reexcision.  My surgeon just called me to tell me the margins are still not clear - within 1 mm. She took a second piece that was a good 5x3x3.  I am small anyways and don't have the guts to take the wrap off to look at it. Anyways, my first words were I want this to be over with so I want a bilateral masectomy and she agreed. I tried to get into the plastic surgeon next week but it's crazy this time of the year so I'm going Jan. 5th and we'll schedule from there.  I am full of so many emotions.  My husband is out of town until late tonight and I feel like I'm losing my mind.  I am angry but somehow relieved that maybe this will finally be over.  I am scared to death of the surgery.  She said they will do sentinel node because that is typical with a masectomy. I am so afraid of the pain of all of it. I would really appreciate any input anyone has.  Please let me know how yours went and what to expect. I feel like I have taken in so much info on DCIS and I'm too tired to start reading about masectomies.  I want reconstruction at the same time.  This site has been the only thing that has kept me going through all of this.  All of you are so wonderful.  Thank you to anyone who can help me with info.

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Comments

  • ajmifaust
    ajmifaust Member Posts: 16
    edited December 2009

    Hi,  I dont have any answers for you seeing I am in the same boat.  Just found out DCIS stage 3 Condo.  Still trying to decide between Lump and Mast.  My "area" could be 6 x 25x .03cm so they are pushing me towards Mast.  But that seems so drastic for something that MAY turn to cancer some day.  Reading your entry - makes me feel like the Mast is the way to go to just do it and get it over with. Also leaning towards reconstruction at the same time. So, your story has just helped me.    I am  also afraid of everything -- the surgery, recovery, how I will feel about myself after -- all for a "maybe".   I am so sorry you have gone through all you have.  This is a good site for gathering information.  I wish you the very best.

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  • boromom
    boromom Member Posts: 59
    edited December 2009

    Glad my story has helped.  I have to say that after going through 2 lumpectomies I am angry I just didn't have a masectomy to begin with but it really wasn't an option.  This seemed to be such a cut and dry case. Everything that my mammo, MRI, Biopsy showed was that it was a small "area", but it goes to show you that that's not always the case with DCIS. Even though it is stage 0, it is still sometimes hard to get rid of because the tissue doesn't look any different when they open you up than regular tissue.  I have read so much about this and listened to presentations by doctors who specialize in DCIS.  A lot of times, Grade 3 doesn't even present itself with microcalcifications so I am lucky mine did. My surgeon said that pathology still says its noninvasive which is good. I do  think mine is kind of rare because usually it can be taken care of with surgery, radiation, and tamoxifen. I have no history of any kind of cancer on either side of my family back to my great grandparents. Isn't it amazing how your life can change so drastically in an instant? I've decided there is nothing I can do about this but move forward and deal with it.  It's all about how we handle the situation.  All my 18 year old daughter keeps reminding me is that I can now have new, "perky, bigger boobs! What a way to get them. I also wish you the best. Keep me posted.  Take care.

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  • KAR
    KAR Member Posts: 225
    edited December 2009

    Hi ladies, I'm sorry your in this situation but it sounds similar to mine.   They were so sure there was just a tiny bit of DCIS and ends up it was from the lobes  and about 4 cm in all.  After the first lumpectomy I didn't feel comfortable with how i would look with 4-5cms out of a tiny breast so I opted for a bilateral.  I must say Ive never regretted it.  It is a scary surgery but doable.   I had tissue expanders placed at the time of mastectomy and just recently exchanged to silicone implants and so glad to be almost over this as I was diagnosed in April of this year.   It really stinks to have to have mastectomy for DCIS but on the other hand they found it early and I have no other treatment so am thankful rather than resentful.  I wish yall luck with your journey/surgery if you have any questions let me know.  Please keep us posted and good luck with the plastic surgeon.  Make sure you realy like the PS as you spend quite a bit of time in the office(especialliy if you go with TE/implants)

     Karen

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  • boromom
    boromom Member Posts: 59
    edited December 2009

    Hi Karen, How long were you in the hospital and then layed up at home?  Can you tell I'm a planner and trying to figure out how much work I will miss? How was the node biopsy? I have heard horror stories about it. I meet with the PS and my BS on Jan. 5 and then we will schedule the surgery.  You are right.  I just took off the bandages tonight from my second biopsy and my breast has a huge indentation.  I think I'm glad I'm having a masectomy because it will never look the same. Just sorry I even did the second surgery but nothing I can do now. Thanks and take care.

    Melissa

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  • baywatcher
    baywatcher Member Posts: 532
    edited December 2009

    I had a mastectomy for DCIS in 3 areas (grade 3). I still feel like I am losing my mind more than 5 years later.

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  • klml4
    klml4 Member Posts: 60
    edited December 2009

    Please see my response to ajmifaust--I just wrote a huge not to her.  I wont tell you all the stuff I wrote in the other message, but I will tall you about after mx.

    I am bmx with te on Dec 4th.  I have been surprised at how well I am doing!  I can move my arms around a lot--I am up and moving around, and doing stuff.  Not doing too much, because Ive had drains in until today.  I had the sentinel node done during my lumpectomy, and I can tell you that really bothered me.  I couldnt put my arm down straight at my side for a couple weeks, and I always had pillow under my arm when I was sitting. 

    I was in the hospital from Friday till Tuesday.  They were willing to let me go on Sunday, but I didnt feel like I was ready to leave then.  I have read that most people only stay one or two nights.  I took off 2 months from work.  That being said, I have to tell you that I work at a daycare center and I take care of infants.  So I wanted to make sure that I really am ready to back when I go back--so I probably took off more time than I need--but I would rather take more and make sure Im ok, rather than not take enough time.  I had immediate reconstruction done with tissue expanders.  My boobs are quite small right now (A's) fompared to what I was before (D's).  Pease feel free to PM me--I will be happy to answer any questions that I can.  I saw that you wrote that you are a planner--so I wanted to point you in the direction of the board of "sugery before, durning and after"  there is a long post on the top about things to have before going in for mx--things Dr's probably wont tell you, but can make your life easier. 

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  • KAR
    KAR Member Posts: 225
    edited December 2009

    Hi Melissa,  my hospital stay was suppose to be 2 days but I had a complication and had to have a second surgery so ended up 4 days(complications are unusual but possible).  I think the first 2 wks are difficult but I did have bilateral mx. I found it hard to reach over about shoulder height and remember being very weak in the arms/chest area.   I also had the SNB just because they cant go back and check via this route when all the tissue is gone.  For this they put a topical numbing cream on before so  the injections didn't bother me(not fun but...).  I hope your visit with your PS goes well and you breeze through the surgery

    Good luck. 

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  • VinRobMom
    VinRobMom Member Posts: 101
    edited December 2009

    Please think long and hard before you allow them to cut off a healthy breast. 

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  • zoegr
    zoegr Member Posts: 113
    edited December 2009

    I agree with VinRobMom. What was the reason you decided for double mastectomy? Definitely this is very personal decision. In my case i decided to have unilateral, because i couldn't stand losing the feeling in both of my breasts. At the beginning docs were thinking of lumpectomy but as it seems i have lumps in more than one area in the same breast so thought mastectomy is a better choice. I don't know if mine is DSIC because Needle biopsy didn't give much information. But i'm praying to be DSIC so i won't need any chemo. Now i' ll have immediate reconstruction and in the healthy breast i have a small implant. I'm cup B and i will go Cup C.

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