DCIS and Bilateral mastectomy

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georgianna
georgianna Member Posts: 10

Hi everyone

I have been diagnosed with DCIS in my right breast. After an MRI revealed 3 sites of DCIS, my surgeon recommended a mastectomy since it is a multi-focal condition. After the initial shock wore off, I asked the surgeon for a bilateral mastectomy thinking the ugly incident may repeat itself on the left side.  So, on September 13, i will undergo just that.

I am asking for advice. How did you cope with waking up with nothing there? How do people get through this. I can't even imagine seeing the scars for the first time. My reconstruction won't start til all is clear from pathology. Any advice would be appreciated.

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  • jpmercy
    jpmercy Member Posts: 189
    edited August 2010

    Hi Georgianna!

    i am in the same boat! DCIS two different sites grade 3with comedo nercrosis. and choose BMX also! i have a strong family history mother and maternal grandmother, mom 23 yr survivor and grandma pasted away from BC. so the idea of it coming back is too much to bare i have a 6 month old baby and just turned 30 yrs old so i want to do whatever it takes to not deal with this again!  i am having surgery on Sept 3rd so i will tell you how it goes BUT my plan after meeting with my PS is to have immediate reconstruction, i am having a sentinal node biopsy on both sides three hours prior to surgery so i will know the results before going into surgery. if all is clear the plan is to do a skin sparing mastectomy and immediate implants behind the muscle as long as 1) that the breast surgeon does not find anything else suspicious and too close to the chest wall. and 2) that the size that i choose will fit correctly. i am very small right now so i choose a small implant as well bc i want to still look like myself. im a little bummed that you have to wait 6 or so months to have nipples put on but i think ill get through it! my mom had a bmx when she had BC and she looks great, feels great and is healthy. i was 8 when she had hers done so for me its not all that horrifying having grown up around a mom wiht a BMX. good luck to you and just keep thinking that you wont have to think about this again after hte final pathology! you have a 1% chance of recurrance and that is less then the general public! look at your scars as a reminder that you are going to be around for a very long time! and be thankful you know about this now grade 3 DCIS can do crazy things down the line if you never caugt it! look as your scars and be proud for having such courage to take control of your life and your health and then help others that might have to go through the same thing one day! take care and ill keep you posted! :)

  • almagetty
    almagetty Member Posts: 316
    edited August 2010

    Jennifer:  I love your attitude!

  • Basia
    Basia Member Posts: 790
    edited August 2010

    I'm in the same boat, scheduled for BMX 9/7.  Not looking forward to it,but I know it is the right thing to do.  If all goes well, I am hoping to have immediate reconstruction.  The PS said that it will be a jugement call on his part when he is in there if he could use perm ones or if I need TEs.  

  • CandDsMom
    CandDsMom Member Posts: 387
    edited August 2010

    Georgianna: I had the same thing - multifocal/multicentric DCIS 9 lovely centimeters of it scattered throughout my HUGE 4.4 lb post pregnancy boulder!  I turned 35 just about 2 weeks before my diagnosis - jpmercy I also have young children at home (my boys were 9 months and 3 yrs when I was diagnosed).  There were also significant questions of what my final path would show - I ended up with "just" DCIS but was overall very happy about that (funny what we are happy about right!).

    Anyway, if you are having a BMX, if you at all want reconstruction, your chances of an optimal cosmetic outcome will be the best by having a skin (and possibly nipple) sparing mastectomy with immediate reconstruction at the time of BMX.

    This does not preclude you having radiation or even chemo if the pathology changes on you.  If you are too nervous about the nipple sparing MX (rates of recurrence are about the same as with traditional skin sparing MX 1-2% lifetime for DCIS) you can also consider areolar sparing MX.  FYI they usually do a biopsy of the area under the nipple during surgery or even pre-op to make sure no cancer cells are there.

    Georgianna it sounds like from your post you are not feeling comfortable with the idea of waking up with nothing there - please please please explore your options - with DCIS, even multifocal DCIS you have some time to research, interview different breast and plastic surgeons and come up with the best plan for you.

    There is no reason in this day and age that you can't have immediate reconstruction if you desire it.  There is no need to wake up without a breast mound if you want one!

    Your options would be implant based or natural tissue (body fat) based.  I got the flap kind (body fat) and immediate reconstruction and am very happy I did.  If you are interested in some websites to see what is possible re: flap/breast reconstruction check out:  www.breastcenter.com   www.drmarga.com   www.naturalbreastreconstruction.com  www.diepflap.com.  

    There is a poster here - Kate33 who also started and is very active posting about NSM (nipple sparing mastectomy) under the breast reconstruction forum - losing my nipples was the hardest thing for me and if I could have saved even the prophylactic side it would have been worth it.  She may chime in here as well.  Take a deep breath - you are going to make it through this but please explore more options, as immediate reconstruction is a right that we have!

  • georgianna
    georgianna Member Posts: 10
    edited August 2010

    oh thanks Jennifer, you have put me into a more positive headspace. I am in Toronto, so things here are different insurance-wise and there is a waiting list for the plastic surgeon anyway. I will be going from a 40DD to zero. I can't play tennis, golf or even swing a bat. I was always the va-va-voom girl but I desperately want to be smaller anyway and was thinking about reduction when ol' cancer came by. I will be giving my collection of underwired bras to whoever wants them. (take them, please someone!). I got a free pair of soft falsies last week and they do not fill the present bras...I have had people tell me, better to be alive then have two useless appendages that may kill you. So let's keep each other posted on the post-op and the outcomes. Have my fingers crossed for you that all goes well.

  • georgianna
    georgianna Member Posts: 10
    edited August 2010

    oh thanks Jennifer, you have put me into a more positive headspace. I am in Toronto, so things here are different insurance-wise and there is a waiting list for the plastic surgeon anyway. I will be going from a 40DD to zero. I can't play tennis, golf or even swing a bat. I was always the va-va-voom girl but I desperately want to be smaller anyway and was thinking about reduction when ol' cancer came by. I will be giving my collection of underwired bras to whoever wants them. (take them, please someone!). I got a free pair of soft falsies last week and they do not fill the present bras...I have had people tell me, better to be alive then have two useless appendages that may kill you. So let's keep each other posted on the post-op and the outcomes. Have my fingers crossed for you that all goes well. I will ask the surgeon about NS and aereola sparing for sure.

  • CandDsMom
    CandDsMom Member Posts: 387
    edited August 2010

    georgianna - are you able to have a single MX first then go back for the other side with reconstruction? I agree that your life is more important than your breasts but this seems really unjust to make you go without...

  • georgianna
    georgianna Member Posts: 10
    edited August 2010

    yes I could but my breasts are so large (40DD) that I will be off balance and probably even more depressed when I see one without the other. My surgeon was adamant, no reconstruction until my breast is looked at by pathology. The left will be prophylactic because I feel it will only be a matter of time. i am 45 now, and do not want to go throught this again when i am 65.

  • bookart
    bookart Member Posts: 564
    edited August 2010

    I did the Grade 3 DCIS BMX due to family history and several previous scares.  I turned 49 this year, just after my surgery. I did not chose to do reconstruction, but I've never had much so it's not a great loss except sensation, which wouldn't improve that much with recontruction anyway.  LE is a bigger concern at this point; but I'm also trying to get my body back - strength and stamina.  I lost a lot of my core strength and just re-injured my back because I'm still trying to do too much too soon.  I go without a shirt at home a lot - I wore t-shirts cut open down the front for awhile because I was too tender to deal with cloth rubbing on the scars.  The scars are pretty tame - two long marks slightly angled from center to pits.  I forget what I'm doing and rub them sometimes right out in public.  It's weird at first, and then it's just commonplace.  Going from large to zero could be more of a shock - a bit like living in New York City and then moving to Poughkeepsie.  It's still you inside there, believe me.  Just your surroundings have changed, so to speak.  Good luck to all and a great recovery.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2010

    georgianna, I'm in Toronto too.  I had a single mastectomy with immediate reconstruction.  My surgery was done at PMH but I also had that option available to me at Trillium in Mississauga.  This was 5 years ago but I don't think that the situation has changed.  I do know that some surgeons and PSs don't offer that option (for their own ease of scheduling, frankly) but immediate reconstruction certainly should possible from other doctors. The key is that you have to be very clear that this is what you want.  That was my position and it was not a problem at all for my doctors.  I did have to wait longer for my surgery because of the need to coordinate the schedules of the PS and the breast surgeon, but with DCIS, waiting a bit longer is not a problem. 

    If this is really what you want, don't give up on it.  Find a breast surgeon and PS who regularly work together (in my case, I had my BS set me up with the PS) and there should be no problem getting them to operate together so that you can have immediate reconstruction.

  • georgianna
    georgianna Member Posts: 10
    edited August 2010

    Hi Bessie: I'm dealing with the breast centre @ Women's College and I agree about the scheduling issues: that's what I think it comes down to. I actually prefer to let everything heal then go on to reconstruction. I have read about some infection/pain issues with TE etc. and I don't do well with pain. (I'm a big baby). And I don't want to wait any longer because this DCIS has caused me pain in my lymph nodes and breast so I am  all for getting it done fast.

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