DCIS and ICD.. what to do!

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LauraM
LauraM Member Posts: 251
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

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 take out another 1 - 1/2 cm, luckily I have large breasts, so 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).  The pathologist that works with my surgeon does not think that she will be able to get clear margins due to the type and how much more was there than showed on the MRI or Mamogram.   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 mastectoy because there is always a chance that with the type I have that it comes back in the other breast.   This is the hardest decision I have had to make in my life!  I change my mind every 5 minutes from going for the second lumpectomy to just taking them both off so that I don't have to worry anymore.  My brother died two years ago from throat cancer(he was clean for 6 years and  then had it come back and died after a 12  year fight) I have two kids under 11 and it really does scare me that I now have cancer inside of me even if it is a different type. I would really like to have some input on what other did with this choice. I go back to see the surgeon next week and need to let her know what my decision is.  Thanks for your help! 

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  • KAR
    KAR Member Posts: 225
    edited January 2010

    Laura, Hi sorry you have to be on this site but it is a wonderful place to find info and support.  I can tell you what I did, of course my situation is slightly different but.  I had bilateral after lumpectomy failed to clear margins.  I had very small breasts and I knew I would be deformed as well as worry constantly about recurrence.   I also have elementary age kids so I wanted to be sure I would be around for them.  I had BMX July with tissue expanders placed at the same time.  I did have a setback in hosp after surg, had a hematoma and ended up in hosp 4 days.  The filling of tissue expanders was not fun but doable.  I recently had my exchange to silicone implants and finally feel like I can put this cancer thing behind me.  I must tell you that I my fake breasts are completely numb, in fact  I have an area under my arm that is also numb(SNB side).   Would I do it again? heck ya  no regrets, its quite a journey but you can do it if thats what you think you should do.  My diagnosis remained DCIS so no other treatment.  If you only have microinvasion I believe the treatment is the same.  Make a pro and con list and go with you gut.    Since my DCIS skipped around a bit I just wasn't comfortable leaving it and hoping it was all gone(just my gut feeling).   Good luck, if you need anything let me know.

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  • sejnboys
    sejnboys Member Posts: 36
    edited January 2010

    Hi Laura - I also have DCIS, high grade with comedo necrosis.  My surgeon did not believe she could get clear margins and leave a significant breast so she felt my only choice was a mastectomy.  My second opinion surgeon was up for trying the lumpectomy first, but I'd decided I just wanted the mastectomy anyway.  Being high grade, and mine being ER-, I want to do all I can to help prevent this coming back....and went on to decide to have the bilateral mastectomy (surgery will be on Jan 12 with immediate DIEP reconstruction).  I have young children and I don't want to have to deal with this again in the other breast down the road.  It is such a personal decision.  I've had moments when I think to myself "why the heck am I removing my completely healthy breast??" but then very quickly come back to what I know in my heart is the right decision for me.  It is a huge decision, and I wish you the best.   ~Suzanne

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  • LauraM
    LauraM Member Posts: 251
    edited January 2010

    Hi Suzanne, 

    Thanks for the reply.  I just found this site last week and it has already been very helpful. 

     I have a question for you,  what made you decide on a DIEP vs a Tram?  My PS does not do DIEP and there is only one or two doctors at Sloane Kettering that do them.   I have a meeting with my BS next week and I am sure if I tell her that I am thinking of a BMX, she is going to freek since she wants me to go for the second lumpectomy before I consider just a single mastecomy on my left breast.  If I go for the lumpectomy,  they have to do a second MRI the same day of surgery because there is a spot that they saw on the first MRI that they want to verify was the invasive piece they took out last time and not another area that needs to be investigated.    You are right about writing down the the pro's and con's of each, that is what I plan on doing Sunday night.  I think I will feel much better once I get past this decision.  Good luck on your surgery on the 12th. I will be saying a prayer for you. 

    Laura

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2010

    Hi Laura...:)... another Laura here...:)

    I cannot give you any info on the DCIS... SS... BUT..... it your BS freaks over you wanting a bi-lat.... Tell her IT IS YOUR BODY!!!!!!

    I had a bi-lat and two bs told me I did not need it.... so I choose the BS that told me.. she totally understood.. seeing as I was ONLY 40 with an aggressive cancer. ....

    I had a Bi-lat with Tissue Expanders... and then implants... this might sound wierd.. but if you would like me to send you a pic  to you... PM me...

    I have seen SOOOOOOOOOOO many gals look awesome with the flap surgeries too!

    God bless.. and TAKE CONTROL of this sister... it is YOUR BODY AND YOU LIFE AND YOUR CHOICE!

    ((((((((((((hugs))))))))))))

    Laura

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited January 2010

    I am 38 and had DCIS. I decided on double mastectomy because I did not want to worry about this again. Good thing I did.. The "good" side had atypical ductal cells not seen on the mammo or MRI. I am happy with my decision. I am numb but I do not care.. I too did expanders and I am awaiting my exchange to silicone in Feb. I have no regrets..

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  • LauraM
    LauraM Member Posts: 251
    edited January 2010

    Thank you everyone for all the great information and for sharing your stories.  I appreciate this so much.  It is crazy but I have talk to a lot of my friends and family about BC but none of them have ever had it so this site is so helpful because I don't feel so alone in my journey. So thanks again!  

    A side question.  How long were any of you sore from your first lumpectomy?  Mine has been 1 month now and it is still tender at the incision site and if I go down stairs quickly in a regular bra is can get very sore, better if I wear a sports bra.    

    Thanks!

     Laura

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  • sheesh1961
    sheesh1961 Member Posts: 240
    edited January 2010

    Hi Laura,

    Man, I feel for you ... that is just such a hard decision. I was diagnosed with DCIS, high grade, left side, in June 2008. My BS and I talked about a lumpectomy initially. Then I had an MRI to see if it was multifocal. MRI didn't show any more DCIS (typically doesn't, according to my med onc), but it also didn't clearly show the area that had already been biopsied and diagnosed. That sorta freaked me out, and after meeting again with my BS and my onc, I decided to go for a bilat mx. Good thing I did -- path after surgery showed more DCIS on the left side, and like Sunny above I also had atypical hyperplasia on the right. I had bmx in Aug 08, tissue expanders immediately, exchange surgery in Oct 08, nip surgery in Apr 09, and am now "done" -- I only have to see my onc once a year for follow-up. 

    Having said all that, there are still days when I wonder "what if" ... did I really have to lose both girls? What if cancer had never actually developed on the right side? But I have 2 young kids too (13 and 11 now), and just didn't want to take the chance. Everyone is different, though. I've never been the type to do anything halfway.LOL I miss my real girls, but I can't imagine having to always worry about maybe not catching it so early next time, you know? 

    Sheila

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  • sejnboys
    sejnboys Member Posts: 36
    edited January 2010

    Hi Laura...I have only been on this site a month or so and it has been incredibly helpful to me.  Like you, I don't have any friends that have been down this BC road, and there is just no way someone can truly understand if they have not experienced it firsthand.  Here in my area the only reconstruction options were TE/implants and TRAM.  I was not happy with either of those for various reasons.  The TRAM did not appeal to me because of the abdominal muscle loss, and because it was going to be a 12 hour surgery here (because they do about 1 a month here vs other surgeons that do a few a week). I'd read about the DIEP (none of my Drs here even mentioned it!!)  but because I'd have to travel it seemed not to be an option.  But the women on this board made it very clear that traveling for DIEP was not only doable, but well worth it if that is the surgery you feel is right for you.  I think it is probably only because of this board and other's sharing their DIEP experiences that I decided to look into it seriously. I traveled to MD and NY (from VA) to meet with two different surgeons and decided to have my surgery in NY. For me, I know this is the right surgery.  It is another one of those huge decisions, which seem to just keep coming in this BC journey.  I do understand and wish you luck with the process.  ~Suzanne

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  • LauraM
    LauraM Member Posts: 251
    edited January 2010

    All -

    Thank you very much for all of  your help!   I am still trying to decide what decision to make.  I meet with the bs this week and get tested for the BRCA gene tomorrow.  I still am not sure what my gut is telling me.. I keep hoping for the "ah ha" moment when it all becomes clear.

     I hope you are all having a wonderful week!

    Laura

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