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mom3band1g
mom3band1g Member Posts: 817
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

My surgeon called me tonight and I need a mx.  I am in such shock.  I thought  I would need a reexcision but not this.  I don't even know where to begin.  I know I will lose my nipple. 

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  • chasinghope
    chasinghope Member Posts: 126
    edited July 2010

    Hi Mom3band1g,

    Very sorry to hear your new, the surgery will end up prolonging your life, but there is no harm in getting a 2nd opinion. I did, I am a grade 3 as well and that means it was an aggressive cancer and the best way to treat an aggressive is with aggression.  I had a bilateral mx but it gave me more peace of mind. Feel free to PM me if you have any questions about the surgery. The surgery is not as scary as it seems but it isn't a fun journey but you'll get A LOT of good support on this site, ((((((Gentle hug)))))) CH

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  • sunsnow
    sunsnow Member Posts: 92
    edited February 2010

    So sorry. I've followed your posts and see how encouraging you've been with other posters. This sucks. You will get through it, but it still stinks. Post away with any questions and we'll all be there to help you through it. 

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  • danix5
    danix5 Member Posts: 755
    edited February 2010

    I am Mom of 5 and have been through this also.  It is better on the other side of surgery.  I am two years out and while I wish I never had cancer I am fine with my new self!!  You can PM me or just stick to these boards they are fantastic helping you get through it all!

    Dani 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited February 2010

    I'm sorry, mom3band1g.  Get a second opinion if you think it will help.

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited March 2010

    Thanks all.  I am in such shock.  I have had such a hard time accepting this whole thing at all that this new piece of info is just so hard for me.  I just never imagined this.  I know no one does.  I am so sad.  I am thinking bi-lateral at this point and I know my surgeon supports this.  My DCIS is so much more extensive than has shown up on mammo, ultrasound or mri.  The area is over 4cm and very close to the nipple.  We thought it was 1cm.  I am small breasted and have always liked my small 'girls'.  They have served me so well.  I nursed 4 children for over 10 yrs straight!  I will miss them.  Now I have to research this new surgery.  Does this mean I won't have to do rads?  I was just getting to acceptance with that.  I know I will be pm'ing some of you ladies when i can form a full thought in my head.  I know it's not the end of the world and I will come out just fine but for now I am just so sad.

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  • blondiex46
    blondiex46 Member Posts: 5,712
    edited February 2010

    sorry to hear that but don't give up.....get a 2nd opinion if you want....come back and let us know what happens.

    Sandy

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  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited February 2010

    Aw, I am sorry you received crappy news. You are at the lowest point right now in this whole journey. I am in my early forties and have been down this road also. Had a mastectomy in Sept 2008 for DCIS, had another (my choice mastectomy) on my healthy breast in July, 2009. I just had my exchange to implant this past Thursday. Did you get the results back yet from your BRCA test? That can help you make a choice between unilateral and bilateral. I was BRCA negative, but had a very strong family history so that sealed my decision. All I can tell you is that I know the feelings that you are experiencing, the crying, surfing the Internet and feeling helpless. However, you will get through. Once your plan is in motion, your body just moves forward. Keep posted to this board and meet all the amazing women (and some men) who have been on this roller coaster. Ask all of the questions that you need. Do not be embarrassed because you feel that DCIS isn't something big enough to call cancer! We are losing our breasts to it. The people on the DCIS boards all know what you are feeling, especially those emotions. Take the time to find out your reconstruction options if that is of interest to you. Make sure that you are comfortable with your doctors, esp. your plastic surgeon because he/she will be with you through most of this path. You will get through this, I promise. Before you know it you will be offering your advice to women who are dealing with the same diagnosis. Please private message me if you want to talk. Hugs.

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  • dsj
    dsj Member Posts: 277
    edited February 2010

    Oh I am SO sorry. I have been thinking about you all weekend, and hoping for the best.  That just sucks.  You seem like a really strong person, so I am sure you will get through this, as others have.  But it doesn't make any less awful.  Please let us know how you are doing.  dsj

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  • danix5
    danix5 Member Posts: 755
    edited February 2010

    First DCIS is cancer, don't let them tell you otherwise!!  Any of you!! You do not have to do rads, inform yourself with the facts and discuss with your dr's.  I had two areas both over 2cm of high grade comedeo sp? necrosis, I researched and in the end decided against rads.  

    You have to decide what you are comfortable with and what statistics your dr's give you. I did not do the rads they suggested or the tamox, but I did do hyster/oopher surgery.  Looking back I feel I should have waited awhile for that too.

    Everyone has to make the decision for themselves.  Believe me I hated that when I was going through it all.... I wanted someone to tell me do this do that ...in the end I am glad I decided myself. 

    As everyone has said on these boards you will get so much support and wise advise here, ask anything vent scream whatever ... we have all been there done that!  As people say!

    Best to you and I am so sorry you are going through this, right there with you I breast-fed 5, so much for that helping us not get BC!!

    Dani 

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  • neversurrender
    neversurrender Member Posts: 508
    edited February 2010

    Sorry for your news.  I also needed Mastecomy and I did decide on the bilateral.  It is a very difficult decision and fortunately with DCIS you have a little time and do not need to rush your decsion.  If you have a Mast for DCIS, you will not need rads.  If you are stage 3 with comedo necrosis your dr may recommend a sentinal node biopsy also.  If you are interested in reconstruction, look into it now, as you may be able to have immediate reconstruction.

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited February 2010

    Thanks again.  I guess I am scared.  I really am not ever scared.  Now I am.  I meet with my surgeon Wed and also get our genetic results back.  I know I will be Ok, I just have to find my feet again.  You support means so much. thank you

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited February 2010

    I'm so sorry... my doctor has told me I will need mastectomy too after he initially thought just a reexcision would get the rest of it.

    I would DEFINITELY get a second opinion as everyone has suggested. Your DCIS is over 2cm... just my DCIS lump alone was over 4cm with a larger area up to 8cm long of microcalcifications, and I'm small-breasted too, but my surgeon didn't believe mastectomy was a must at that point. In the end, it may be something you WANT to do, but don't let one doctor's opinion make you feel like it's what you HAVE to do. 

    I'm still in denial myself (after being told reexcision wouldn't work, back in December) and am optimistically hoping to get away with only partial mastectomy, nipple/areola/skin-sparing, and without radiation afterward. But, I have a very high risk tolerance and no children to live for, so I can afford to take a higher risk I guess.

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  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited February 2010

    I am so sorry to hear that. I second all the posters above who suggest a 2nd opinion, but after having a scare recently where they thought I might have invasive BC, I researched MX heavily, and the results with reconstruction can be very, very good.   Sending hugs and support to you.

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  • roseg
    roseg Member Posts: 3,133
    edited February 2010

    I'm sorry to hear this. It's got to be a shock. At least you tried with the lumpectomy, and I take it that the pathology didn't turn up any invasive cancer. Although it doesn't seem like a blessing I think eventually you'll accept that it is. It's a shock and a pain but it's not life threatening.

    As Marianna notes, the results with reconstuction, particularly when you haven't had prior radiation are good. I wouldn't waste time and money on a second opinion. Yes you might find someone willing to do a second lumpectomy but you'll end up with a deformed breast. Better to just have the mastectomy and move on. 

    I'm sorry you got the news but things will look up.

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  • Mantra
    Mantra Member Posts: 968
    edited February 2010

    I too had to have a mastectomy for DCIS after my lumpectomy came back with one margin that was a little less than what it should have been. My case was presented to the tumour board and 10 different doctors each said mastectomy was the recommended route. I had 8 tumours in two quadrants of my breast. The cancer was ER/PR negative, grade 3 etc. I was unable to have an MRI because of my tissue expander.

    In my case, the pathology from my mastectomy showed no additional cancer cells so in reality, the lumpecomy did infact get rid of all the cancer. However, I don't regret it for one single minute. I would have been constantly worried that they didn't get it all.

    Yes, I agree with others that getting a second opinion is probably a good idea. But if it is the recommended route, than I believe you need to do whatever will keep you healthy. I think the thought of having a mastectomy is much worse than actually having it. You can explore the various reconstruction option and find a PS who specializes in the type you want.

    You'll get through it. Give yourself some time to breathe and to think things through.

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  • robinlbe
    robinlbe Member Posts: 585
    edited February 2010

    I'm another one of those DCIS ladies who ended up with a bilateral MX.....my lumpectomy (which literally took half of my left breast) still didn't have clear margins, and worse, showed my disease was multi-focal.  Meaning, it could not be treated with rads. My BS and two different oncologists all said my only choice was the MX.  I could have had the unilateral MX, but I would have had to take tamoxifen (which I didnt' want to do) - I opted for the bilateral.

    I dreaded the surgery - cried a lot before hand.  My husband took pictures of my chest the night before. 

    I am now six weeks (tomorrow) out of surgery.....some days are better than others, but more than half of the time, I'm starting to get used to this - as much as you can in this short of time.  I opted to not have reconstruction right away. I'm a "one step at a time" kind of gal.

    Get your extra opinions. I miss my breasts - more than I thought I would.  I was on the small side to begin with, and didn't think it was going to matter all that much - but found that it did.  I, too, nursed my babies....but I have found I actually find comfort in looking at the pictures m husband took of me the night before surgery (and printed and hid!!!) .  Probably sounds a little silly, but I'm glad I have them...

    Keep searching, keep asking....personally, I'm glad I don't have to do anymore, although there is some bit of "survivor's guilt" that goes along with this too....but losing both breasts is a big price to pay, too.

     blessings...robin

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited February 2010

    thanks again all.  I thought I was having a hard time accepting my initial diagnosis...ha, that was a walk in the park compared to how I am dealing with this.  I seriously think I need some 'help'.  I told my husband last night I wasn't doing anymore surgery and I was only 1/2 kidding.  I have always thought of myself as a strong person and able to handle what comes to me but now I don't feel so strong.  I am a blubbering mess. 

    I looked at pics of recon last night and it made me more afraid.  I am such a wimp...how did I not know this about myself?

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited February 2010

    Robinlbe -

    My rad onc was willing to treat multifocal/multicentric disease, and my med onc would not have pushed Tamoxifen if I'd had a mastectomy.

    Mom3b -

    Sorry to hijack this thread, of all threads.  My adventure in Cancerland has made me a big believer in second opinions.  Which is not to say that I "know" you can save your breast if you find the right BS, maybe you can't.  And if you can't, all I can offer, really, are hugs and chocolate.  And a very slightly used post-mastectomy camisole, size L, which now only has one velcro drain pocket (I lost the second one in the wash somehow.). So, here's hugs and chocolate for breakfast.

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited February 2010
    Ditto the second opinion. I've had some amazing experiences with this (which I'm not going to detail bc they're long) but I went to two BS's; they said the same thing. On the way to the third I thought, well, she's not going to say anything different. Walked in and she said the radiologist said you need to biopsy a second area of the same breast, in light of the path. findings. Wow! Shocked and amazed. They're at the same institution so I can see why they talked, but it's ON THE PATH REPORT, recommending this second biopsy. 

    How come the other two BSs seemed to miss this?? Who knows. But my third opinion was, in fact, somewhat different. In your situation I'd aggressively question the surgeon and ask why a mastectomy is being recommended. 

    Good luck and best wishes!
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  • dsj
    dsj Member Posts: 277
    edited February 2010

    nothing really except to say I'm thinking of you and hoping you get (got?) good news from the genetics counselor.  Also hoping that it will help you talk through some of this with your BS.  dsj

    PS it doesn't really sound to me that you are in the land of denial (cf. what you said on another thread); I just think you are processing it naturally.  My therapist once told me that people often process difficult things in stages. You dwell on the part you can deal with until you are ready to deal with the rest. 

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  • ebarnes48
    ebarnes48 Member Posts: 37
    edited February 2010

    I had my massectomy  last march, I asked about the lumpectomy but was told that they couldnt be sure of getting all the cancer cells and a mass would be better,  so in I went for the surgery,  had my left breast removed and 16 lymp's  I dont miss it and nor do I wear a false boob, the surgery has given me a better chance of a long and normal life. I am very comfiy with my new look and its now a part of me.  and if the way I look with one boob gone makes people think twice about getting their mamograms done all the better.

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  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited February 2010

    Aw.  It is okay to feel that you are not strong, let the crying out.  But the fact is you are a strong woman and you will get through this.  In the beginning, everything is so frightening and overwhelming, but things will start to fall into place soon.  The fear before my mastectomies was worst than the surgeries themselves.  As I said before, I had some physical complications and emotionally it was hard, but I am leaning towards other side of the rainbow.  I opted to do my other breast, so if it was so bad, I wouldn't have been able to do that.  There are always days we cry.  I just cried when I got home from my checkup with my Plastic Surgeon  today after my final implant exchange.  Basically for no reason.  Everything is healing well, but I guess I needed to think about the past year and half and have a small pity party for myself.  It is allowed.  But those days come and go, and there will be a bright light at the end of your tunnel.  I promise.

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited February 2010

    Ok, I am back from my vacation from reality (a sleeping aid helped too) and had a better day.  We met with my bs and she sent us straight over to a plastic surgeon as well.  My DCIS is over 4cm.  My bs just said my cancer is just the opposite of what is typical of DCIS and she doesn't even want to guess anymore.  We talked about the possability of rads and even chemo.  We just don't know what she will find when she is done.  We even joked that now that we had covered the worst scenario it then wouldn't happen (crosses fingers).  We will try to schedule my surgery within the next 2 months and I still have to decide between a uni-lateral or a bi.  I know my husband would prefer me to do both and I got the feeling my surgeon would prefer that too.  But they both know/feel it is my choice.  I have some soul searching to do.  Amazing how a little sleep and new info helps you feel better.

    Thanks everyone for your kind words.  Helps more than you know.

    kathy

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  • dsj
    dsj Member Posts: 277
    edited February 2010

    Oh I am so glad you posted--I have been thinking about you all day.  And so glad you had a better day (whatever that might mean under such circumstances).  Everyone says you feel better after you know what you're dealing with and after you have a plan, and it sounds like it's that way for you too.  I hope you can keep those feelings as you work through this.   

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  • mikita4
    mikita4 Member Posts: 1
    edited February 2010

    Hi Kathy (I'm Kathy too),

    I, too, had DCIS, comedo neucrosis. Diagnosed Dec 2008. I had my BRCA test come back negative, but, like another lady, had a strong family history of bc. I knew from the moment I THOUGHT I had bc that I'd have a bilat mx. My mother died of ovarian cancer, so I have always worried about getting that. In Nov 2008, my ob/gyn talked me into an oopherectomy. He'd tried for several yrs,. I finally said yes, had it, and my ovaries came back clean. But 2 wks. later, was told I had bc.  I had my bilat mx March 31, 2009, with immediate DIEP reconstruction. It's a very hard surgery, but I don't regret it and would do it again for the piece of mind.

    I'm not saying this is right for everyone----just me.  I have worried too many yrs about getting cancer that I couldn't worry after a lumpectomy about it re-curring.  After the mx was done and the pathology report came back, I had 2 more spots of DCIS in the same breast that didn't show up on the mammogram!  The 'healthy' breast was ok.  I am scheduled for my nipple construction on March 31, which will be my anniversary of my surgery.  Since that 'major' surgery, I've had one revision, which wasn't bad at all. Had it on Thurs and went back to work on Monday.  After the nipple, I'll have my 2 tattoos and will be finished.  All of this should have already been completed, but I've never been in a hurry and have taken my time with each step.

    I remember the day I called the doc's office and he wouldn't give me my results over the phone. I knew then what was coming. When I got the news the next day, I cried and it continued for weeks. After surgery, while still in hospital, I was in no pain, but all of a sudden started crying uncontrollably. Hubby thought I was in pain, daughter didn't know what to think and neither did I. They thought I needed pain meds, but I told them I didn't know why I was crying.. The nurse came in and told everyone to leave me alone and let me cry...it was allowed and expected... After coming home, I cried a lot... The crying spells got less and less each week.  

    You WILL get thru this, then look back at how strong you really are.. My brother tells me I'm his hero.... that I made up my mind, went thru the surgery, the recovery and all and did it with gusto.  You WILL have the courage to do the same thing....whatever you decide to do.......you will surprise yourself.  We're given 'barriers' to go thru sometime, but it's one barrier....we'll have more, but in between those times, we'll get back to normal..... It will pass... You will recover....You will know just how strong you are....you HAVE to be strong to get to the other side and you WILL get to the other side...take your time........breathe...........research, research, research and do more research. Don't let anyone tell you what to do.. My hubby, my oncologist, doctor all thought I was going overboard with a bilat mx.  My oncologist sat for an hr trying to talk me out of it. She told me all sorts of things....like husbands sometimes leave wives that have their breasts removed...... I followed thru and after the pathology report, they all said they were glad I didn't go with THEIR opinion.

    Make your own path, listen to your heart and your head.......Do what's best for YOU!!

    PM if you need to talk. Sorry it's so long. I get carried away with this breast cancer stuff!!!

    Good luck, and BREATHE...............................

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  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited February 2010

    Same story here. When I first was diagnosed with DCIS, I was inconsolable. When I met my breast surgeon, I was ecstatic that he said I could have a lumpectomy and save my breast. Then I had my MRI and it lit up another small area of DCIS. My doctor still felt it would be okay with two lumpectomies. It very well could have been, but somehow in my heart I felt that with two areas I should be thinking mastectomy, as I saw my mom die of this disease in an advanced form twenty years ago. I talked it over with my doctor, and he never tried to sway my decision. It was heartwrenching to decide between the lumpectomy and mastectomy. Some close family members were totally against me. I was so caught up between the lumpectomy and mastectomy that I really didn't think of my other side. So I had the unilateral and everything was good. A few months after I had to go for a routine mammo on my healthy breast and freaked out just because it reminded me of everything gone wrong previously. It came back clear and I decided to take the BRCA gene test. It came back negative. At the time, I was getting ready to do my expander exchange and my plastic surgeon started talking about revising and lifting my healthy breast. In my heart, I felt that if it needed to be revised and lifted, why not take it and try to stop worrying about getting something in this breast, which once again the chances were slim. Mentally, I couldnt wrap my head around more testing in the future. So I went ahead with it and have never looked back. And I had MAJOR complication issues, mostly because I overdid things when I shouldn't have way too soon. But still I never have once regretted my decision. I do miss my natural breasts and the sensations. However, I would rather be mentally sane then constantly worrying. It is a very, very personal issue. Only one that you can make. Many women are fine with close monitoring and testing and will be one hundred percent well for the rest of their lives. Some other women (like myself) are too emotional and cannot fathom the thought of more mammos and ultrasounds. You will make the right decision for you. Do not rush into it. Take your time and research. Like the above post said, BREATHE, you will get through this. Well, I think my post may have been longer than the previous. Yea, we do get to get caught up when we talk about this DCIS stuff. LOL

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