DCIS and Mastectomy?

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited July 2012

    Ottawa, I so wanted to go that way - direct too implants with alloderm, but unfortunately, the surgeon was out of network. I was so upset because after I made up my mind on the breast surgeon (and he accepted my insurance), his plastic surgeon didn't !!!  So not fair. AND... I got my bill for his consultation fee.  GET THIS...$735.00!  my insurance only paid $124.00 and he's expecting me to pay the difference.  I called his office posing as a women interested in breast augmentation and was told his consultation fee for that was $75.00. 

    Anyway... I had my BMX in March. Did the TE route and just had my exchange to squishes. I've posted my start to finish pictures here:

    http://greenmonkeytales.blogspot.com/2012/07/monkey-me.html

    I had a miserable time of it but that was because of doctor error. If I were to do it all over again, the only thing I know for sure is that I definitely would still have a double mastectomy for my DCIS (final pathology report showed more then was detected after two biopsy's, and an MRI).

    Good luck to all of you and I'm here if you have any questions!  Best, Shannon  

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    Hello ladies, just a quick update.  Boy am I learning something new daily about DCIS and the treatment.  I have been so stressed about waiting for a surgery date, didn't even have me scheduled to see the BS until 8/9.  The BS called me yesterday and offered me an appointment right then and I took it.  It was a relief to have this meeting, but still looking at a 9/5 surgery date.  I've decided to do the MX and immediate reconstruction, now trying to decide DIEP Flap or TRAM Flap.  I have a second opinion in Beth Israel in Boston on Tuesday.  Both of these options have +/- about them and I'm sure I will make the right choice for me.  If anyone would like to offer any info on either, I would appreciate it.  Not that you all haven't provided a wealth of information to date.  Thank you all for being here.  I hope everyone is having a fantastic day.

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    GreenMonkey, thank so much for sharing, especially your personal before and after pics.  Boy it looks like you went though some triing times, I'm so glad to hear that you are on the road to recovery.  I decided on the Double MX, they told me that my right side only has a fibroadenoma in it, nothing to worry about, but I'm just having it removed - I just have a bad feeling about it.  So, I will be interested to see how the PATH comes back.  Enjoy your day.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited July 2012

    Postitiveenergy, GO WITH YOUR GUT! I did, had a BMX, and my IDC was found in the OTHER breast, not the DCIS side. I just knew, so good luck, AND, I.hope you DON'T find anything in your other one.

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  • howhm02l
    howhm02l Member Posts: 147
    edited July 2012
    Positiveenergy - Just a thought on the MX with immediate DIEP reconstruction.  My PS likes to have at least a week in between surgery and reconstruction so that the final pathology report comes back.  He does not want to do reconstruction until all other treatment, if necessary has been completed.  For example, IF the pathology were to indicate that rads might be necessary you would not want to have rads on your newly created DIEP breast.  As for DIEP v. TRAM, I understand the preference is for DIEP, if possible, because it saves you from losing abdominal muscle. 
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  • Kd6blk
    Kd6blk Member Posts: 114
    edited July 2012

    Best wishes to you with your surgery. I have my BMX o August 1 with PRMA...it is just 1 week away....

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited July 2012

    Moon!  me too, went with my gut and in my final path report they found more then my two biopsy's and an MRI showed. I knew I was doing the right thing. I had a doctor tell me "I was crazy" (the head breast surgeon at Memomial Sloan Kettering) for having a BMX for DCIS. Ha! trust your gut is right!!!

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    Kd6blk - thinking about you!  You are in my prayers!

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  • Kd6blk
    Kd6blk Member Posts: 114
    edited July 2012

    Thank you...I have my clothes bought today...button up the front blouses...jammies...Wednesday is my day...so hanging in there...

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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited July 2012

    kd, you will be in a much better place when the surgery is behind you. wishing you all the best!  

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited July 2012

    Ls, you will be ok, enjoy your weekend.

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    Any ideas anyone can give me would be greatly appreciated.  Does anyone have any magic way to keep your mind on your job while waiting for your surgery.  I still don't have a date, maybe after I do have a date it will be easier, but right now, not so much.  Thanks for whatever information you can share.  Brenda

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2012

    only magic is to stay busy, I worked during all my junk, had 3 surgeries (day off for each as they were lumpies) and also did rads, while working too.  Focus on the end!  I kept a calender on the wall in front of me and marked off the days.  My rad center said to plan your vacation for when the rads are done.

    was my mind on my job? not so sure but it was during my busy periord at work so times I really did not have a choice

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012

    Thanks so much, it helps just knowing I'm not crazy and weak.  Enjoy your day, don't know where you are in the world, but it is gorgeous in N.H. today.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2012

    Positive energy...nope you are not crazy and certainly not weak!

    In NJ it is not bad after a weekend of storms, if NH is having a good day, get out and enjoy it ~

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  • positivenergy
    positivenergy Member Posts: 73
    edited July 2012
    proudtospin.. . .  Good to hear it from someone who knows Smile  Wish I could get out, but working.  Got out for a little bit at lunch, it is like 78 with a light breeze and bright sunshine - so nice.
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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited July 2012

    Before surgery. I had to be extra careful to stay focused. Good luck.

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  • Jen42
    Jen42 Member Posts: 246
    edited July 2012
    Yes, staying focused at work was what I had to do, too. With varying degrees of success ! I remember feeling completely stressed out by EVERYTHING and wishing I didn't have to work while dealing with doctor appts, research, decision-making, etc. But I think it would have been worse to not have the job to focus on.  I rode the roller-coaster of emotions after diagnosis and once I made my treatment decision, boy did I want to just get the surgery over with !! The date couldn't come fast enough. At home on weekends, I stayed busy doing research on bc and getting things ready for when I would be down for the count after surgery. I didn't find this site until two weeks after my BMX, I know it would have helped me so much if I had found it before ! But better late than never...  Smile I remember feeling really alone, like no one understood what I was going thru. I wore a button that said, "keep calm and carry on", I tried to make that my mantra when things felt overwhelming...
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  • GreenMonkey
    GreenMonkey Member Posts: 666
    edited July 2012
    Positive, I had a book that I used to prepare me for surgery. I did visualisations and meditations, and mentally opened myself to healing. It empowered me and ...gave me something to focus on during the waiting period. I even had affirmations on my I-thingy that I listened to during the BMX and gave the doctors and nurses affirmations to say as I was going under. They were great about it and said people do this all the time. 
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  • positivenergy
    positivenergy Member Posts: 73
    edited August 2012

    Ok, so had a major wakeup moment this morning.  Went to Beth Israel in Boston for a second opinion and, not sure what I expected, but didn't get it.  I just grasped this morning that this thing is going to be part of my life for a long long time.  I guess I was expecting someone to take it out and I'd just go on with my life, but it's more than that.  I know I will be fine on the other side of it all, but man it has been a serious wakeup call on my life.  Home trying to process today, back to work and life tomorrow.  My BMX w/ TRAM Flap is scheduled of 9/5/12.  Until then, gonna try to have a regular life.

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  • Leama
    Leama Member Posts: 11
    edited August 2012

    Hugs to you positiveenergy!  You will be more than fine - this is a life lesson that we all in one way or another will learn from.  For me, since the day I was diagnosed, I was saying "yes" to pretty much everything that I would have normally flat out said "no" to.  It made me realized that I had no reason to go home at midnight after a fun time with friends - as if I was Cinderella!  I realized how saying, "yes" opened my eyes up to a life I was missing. I'm terrified of my surgery on 8/8 - I think its ok to admit it now.  I had a party last Friday with friends and family and it was all to celebrate me in anticipation a long road to recovery & healing.  I think we're all, if we haven't already discovered things about ourselves that we never would have uncovered.  I know I'll be ok and so will you.  You'll live stronger because of it! 

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  • Jen42
    Jen42 Member Posts: 246
    edited August 2012

    Wonderful post, Leama.

    You -- and anyone else -- facing the surgery WILL  be OK. I will always remember what one woman in my support group said about her mastectomy:  "it's not a good time, but it's do-able" . That sums it up in a nutshell. The fear of the unknown and the anxiety between diagnosis and surgery are the worst. I asked my BS for Xanax to take the night before and morning of surgery. I had never taken Xanax before. The one the night before helped me sleep. The one the morning of allowed me to be calm and sure of my decision and ready to "Get this over with". I think I would have been an emotional wreck without the pharmacuetical help. The drug wouldn't let me overthink anything...it was quite a lovely state to be in for this chronic overthinker !!

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  • positivenergy
    positivenergy Member Posts: 73
    edited August 2012

    Decision is/was made to do a TRAM with a BMX, I was told that I was a candidate and I could have it on 9/5/12.  When I made the decision and called the PS, I was told by his nurse that he had some trepidation about doing this surgery on me because I have a lapband on the right side.  His concern is that the rectus muscle might have been compromised by the lapband surgery and the operative report does not have a clear answer to that.  I asked the lapband surgeon if she would speak with him if he called, she was great and said she would, but he's hasn't called.  His nurse called me last night and said that he was 85% sure it would be fine and, if not, he would put an expander in the other side.  HAS ANYONE HAD THIS ISSUE WITH A LAPBAND CAUSING CONCERN FOR A TRAM FLAP BMX?

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  • LAstar
    LAstar Member Posts: 1,574
    edited August 2012

    Have you looked into going to the Center for Restorative Breast Surgery in New Orleans?  They do procedures that don't involve muscles, and they offer options to take the donor tissue from your hips or bottom.  I think that they deal with a lot of complicated scenarios.  I went there for my BMX & hip flap and felt a lot of confidence going to these surgeons.  I had to send my medical records, some photos, and an application and then they contacted my insurance company and let me know in 2 days that I was cleared for coverage.  They scheduled me for 4 weeks later.  It would be interesting to see what their approach to the lapband issue would be.  I know it is a hassle to go out-of-state for surgery, but they make it doable, especially if your insurance covers it.  Just a thought!  Best of luck getting the best care!

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2012

    positivenergy,

    You might want to post your question in the Reconstruction Forum.  There will be a lot more women there who've had a TRAM vs. just those with DCIS that you'll find here in the DCIS forum.  

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  • positivenergy
    positivenergy Member Posts: 73
    edited August 2012

    Thanks ladies, both great suggestions.  I will let you know how I make out. 

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  • owlwatcher
    owlwatcher Member Posts: 130
    edited August 2012

    I did the same as you.i havent regretted it.

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  • positivenergy
    positivenergy Member Posts: 73
    edited August 2012

    So, it's looking more and more like I will be getting a DIEP in Boston on 9/17.  I could have the TRAM in NH on 9/5, but beginning to feel like the DIEP is worth waiting for.  However, I did get a call from the surgeon in Boston who gave a second opinion and they read the MRI as the DCIS being 8 CM, not the 5 CM that Concord told me, or the .8 MM the first person told me before the MRI.  This is so confusing and overwhelming, I feel like a ticking timebomb, but I'm sure I will be ok.  I figure I will focus on strengthing my obliques and loosing some weight before surgery.  I think that will make my recovery better.  Thanks for everyone on this forum for support and thoughtful comments.  Good Night....

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  • Teri060811
    Teri060811 Member Posts: 28
    edited August 2012

    I was recently diagnosed with DCIS in my left breast.  The radiologist said it was the most abnormal MRI he had ever seen.  My entire breast clear up to the nipple is overtaken with DCIS.  The pathoogy report came up ER- and Pr- and Her2+.  One biopsy was classified as Stage 0, but another biopsy found free floating fragments with IDC and was classified as low to moderate and Stage 1.  My only option is to have a mastectomy in my left breast.  I will not know if I will need chemo until a biopsy is done post surgery.  I am 90% sure that I will opt for a double mastectomy although my right breast is fine.  My thought was that it would relieve any worry of developing breast cancer in the right breast and that my breast would be more symmetrical if I had them both reconstructed at the same time.  Does anyone have thoughts or suggestions?  My breasts are large (DD), and if I choose to keep my right breast I would have to have a reduction and lift to match the  left one.  

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2012

    Teri, welcome to BCO - we're glad you found this awesome community.

    Since part of your question is about reconstruction, you might also want to post on the Breast Reconstruction forum for information and support.

    • The Mods

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