Still In Shock

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joyko
joyko Member Posts: 104
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I just returned from my post-biopsy consult with my BS.  I already knew the diagnosis-DCIS, Stage 0, ER/PR+, Grade 3.  I also knew that grade 3 was aggressive - but secretly - I held hope for having a lumpectomy - and it would be gone!!!  However - the BS told me the area of DCIS is 3-4 cm ... so having a lumpectomy (I'm small breasted) would be tough to do without disfigurement.  She leaned towards the mastectomy --- and after talking with her for quite awhile --- I would do both, even though my right breast is the one with DCIS.  I have another appt. with a different BS on Tues - and an MRI scheduled that day for BOTH breasts.  I know that this is not a death sentence ... but I am so darn emotional tonight over this whole thing!!!  I somehow believed it would not come to this ... and now it has.  Plus, I am concerned over the MRI showing even more 'stuff'....I just feel like this snowball keeps getting bigger and bigger.  Sentinel node comes into play during the mastectomy ... which scares me again!!!  Gosh --- I know I sound like a baby ... but I am trying so hard to tell myself I'll be ok .... but will I?  My husband is great - very supportive....so I am lucky in that respect.  I thank all of you for listening to me --- I am not one to tell all my friends about this right now ... only a few close friends know.  I feel blessed to have found this forum and all of you.  

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited February 2010

    joyko,

    Boy do I know how you feel!  I too hoped a lumpectomy would be it and am now scheduled for a bi-lat mast March 25th.  The week I found out I would need a mast is still a bit blurry.  I have never been so sad.  It does get better, somewhat.  I saw a plastic surgeon and it was good to get that info.  You are in the worst part.  I promise it will get better.  It just takes time to sink in.  Don't be afraid to take something to help you sleep either.  I have been using Tylenol PM ...just to help me sleep soundly.  I wasn't before and lack of sleep is never good.  Hang on and read as much as you can handle at a time.  hugs.

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  • joyko
    joyko Member Posts: 104
    edited February 2010

    Thanks for your support....I am really counting on this getting better -- because today really was not a good day!!!  I guess we both should be thankful that we are in this boat - and not dealing with all the issues that some of these other ladies have to face.  With that said ... I have been trying to hold up as best I could....but I felt so sad today.   Did you have DCIS in both breasts?  The reason I am asking is although right now they only think it is in the right breast....I am thinking of a bi-lat mx too.  Other option of a radical lumpectomy would involve plastic surgery ... but I am not sure if I would rest easy always thinking about the big "C" and it re-occuring.  I appreciate your thoughts if you care to share!!  I wish you all the best on your surgery - but I know I will be 'talking' to you here before that!!!  ((((hugs)))))

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  • June2268
    June2268 Member Posts: 1,202
    edited February 2010

    Joyko I am so sorry to hear your shitty news.....I would do as much homework as you possibly can and talk to as many women who have gone through this as well because to make a long story short I went in for a lumpectomy which I thought was going to be fine because I am a C cup and they were going to only take 5 cm's out, but in the end it was over 9 cm's and then just when I was getting used to looking at myself all lopsided they blindsided me with a routine mammogram to be done right before I start radiation treatments and they found more.....I so did not see that coming, so being crabby and not thinking straight I said do what you have to do because in the end I want it all out....well he took another 9 cm's out and I am so lopsided I cannot even stand to look at myself in the mirror......if I only knew I might have chosen a mastectomy so I could do reconstruction right away........I know I should feel happy that they caught this at the earliest stage but I am second guessing my decision...........I guess alot of women tend to do that as this is the hardest thing I have ever done.......

     So all I am really trying to say is get as much advice as you can because with this disease you never know in the end what will happen, so reach out to as many women on this site as you can and do as much homework as possible because this can be so overwhelming.... look for Beesie as she has helped so many women on this site and everyone loves her, she really knows her stuff.......I will say a prayer for you.....and please know you are not alone in this nightmare.......hugs to you and good luck!!!!!!

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited February 2010

    Joyko - The reason I am doing bi-lat took me some time to come to.  Everyone has a different approach and reason why they choose what they do.  I had to do some deep soul searching and came here very often.  You can read my other posts.  I had my lump because all that showed up on MRI (the only test that showed any DCIS.) was my 1cm palpable mass.  My surgeon and I felt the lumpectomy would be all that was needed.  When it was sent off to pathology we were all shocked (even my breast surgeon) to learn it was at least 4cm.  I am not even an A cup and it reaches under the nipple.  There is no way to save the right side.  One of the things I considered is that almost none of my DCIS showed itself on mammo, ultrasound or MRI.  I cannot trust that the left is OK.  I am 39 and my kids are young.  I am 'lucky' in that I have a chance to get it ALL and not have to come back months or years later.  So, those are my 2 main reasons and it was NOT easy to come to my decision.  Many tears were shed.  I hope after you talk to your surgeon you will feel better.  I don't regret doing the lumpectomy as at the time we made the best decision we could given our info.  Do I hate that I have to go back? Yes!  But I know we tried to save my breast and I have no regrets about that.  Hope this helps.

    k

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  • joyko
    joyko Member Posts: 104
    edited February 2010

    You've been such a support to me, K, along with the other women here.  After reading some of your other posts....we seem so much alike, not only with the diagnosis, but feelings, inner thoughts, emotions over surgery, even being small up top! (haha!) etc.  I so appreciate you getting back to me about your decision to have a bi-lat...and I know I am heading in that direction, too.  I am struggling (as you were) to get my head around all of this --- and it hasn't even been a month since I went for my annual screening!!!  How life can change so dramatically in one day!!!   I have four children (like you!) and I haven't mentioned anything to them yet.  They are all teenagers....and have seen some of their friends' parents go through the fight with cancer --- with some having lost their battle.  I know my sons will be quite upset when we tell them - and scared, too!  I am trying each day to put on my brave face...act like all is well....basically go to that place called "DeNial" --- and when I have my moments alone, or just with my husband, the tears flow!!!   I am also frightened that they are going to tell me that I have cancer elsewhere....which can really freak me out if I think on it too long!  I am not a 'doctor' person....always have been healthy (thank God), worked out --- and never depended on others to do for me.  This is taking me to a different place --- and I am not ready to 'spread the news' to many other people right now.  Two of my dearest friends know about me (one lives in another state and has already battled bc) --- and my brother's wife is also in on the 'news'.  I haven't even told my brother as he has been battling brain cancer for 4 years!!   In time, he will know -- and I realize others will be told --- but am I strange for not wanting to share all this right now???  I hate waking up and POW!  I remember what lies ahead.  Thanks for listening to me ramble...I hope you have a blast in Florida!!!  J.

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  • rinna40
    rinna40 Member Posts: 357
    edited February 2010

    I remember the shock feeling too. Wow, it hits you like a ton of bricks, that people are discussing surgeries and your percentages, your mortality. UGH!!!!  I only had a lumpectomy, but to make a long story short, because of lack of clean margins and then a hemotoma that openned and needing a third surgery to reclose the second surgery, my simple lumpectomy ended up reducing my breast from a D cup to a B cup. It also isn't a nice and tidy scar. However, I'm still happy that I did not do a mastectomy. Maybe in a year or so, I'll have reconstruction to even the girls out, but for now I'm OK with how I look ( and my husband is tooEmbarassed). That being said, I have a dear friend who had five tumors in her B cup breast, so she had a mastectomy and about two years later reconstruction, and she too is happy with her decision.  Do what feels right to you, but don't beat yourself up if life interferes and things don't go as planned (my first lumpectomy was amazing - almost no scar even, but no clean margins led to ......). This is a journey, and we make the best decisions at the time with the information we have. 

    Rinna 

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  • REKoz
    REKoz Member Posts: 590
    edited February 2010

    Joyco-

    My heart goes out to you. You are most definitely at the WORST part of this arduous journey. Just here to share that my experience was very similar to yours though I had a 1.2 IDC tumor along with the DCIS. But the situation was the same in that I had no choice but to have a mastectomy on that breast. There would have been nothing left of my former small breast once they were finished. I too opted to go with both even though the right was "unremarkable." As you know, it's a very personal decision but that was the one I was most comfortable with.

    You WILL be OK. Your stats are good for a future free of cancer. Yes, psychologically it is a battle but you WILL get through this. Just remember...a day at a time.

    God Bless,

    Ellen

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  • Suzanne3131
    Suzanne3131 Member Posts: 3,953
    edited February 2010

    Joyko, I am sorry for all that you are going through...all of your feelings are perfectly normal and you are NOT just being a baby!  Like everybody else says, it really does get better. 

    I wanted to make a suggestion ~ about telling all your friends ~ you may want to consider asking the few friends that you HAVE told to make the calls.  One of the really hard things is to tell people...more specifically, to have to hear and deal with their various reactions.  When I was diagnosed, I asked my father to call all of my siblings, and I asked a couple of good friends to tell anybody who would want to know, and asked that they not all call me up....I just didn't want to talk about it all that much.  It was painful to have to keep rehashing the timeline of events and the diagnosis and the tx plan.  Then, when I was ready, I set up a webpage at CaringBridge.  This was a free online tool where you can set up your own page to make journal entries to keep everyone informed of my case without having to say it over and over.  It was impossibly easy to set up...it took 5 minutes.   It gave me time to settle down and try to stay out of the drama while I progressed in my healing.  It was a Godsend.

    Best wishes to you on your journey.  You will get through this.  Blessings to you....Suzanne 

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  • rabbit69
    rabbit69 Member Posts: 3
    edited February 2010

    Hi there,i am a 40 year old mummy,and have just been told the same as u,dcis...it absolutely floored me when i found out...i have no idea how bad or what grade because the hospital have just said dcis,,,,tho after reading this forum iv decided to ask what grade i am at..I was offered a lumpectomy or mastectomy...I have chosen the mastectomy...am due to see the surgeon on Tuesday to talk over my options for surgery....I no exactly how you are feeling about things,I found out a week and a half ago,things just move very quickly once your on the nasty conveyor!!!  Im am fearful for my future mortality...will I still be here in 10 years time...God only knows but im not going down without a fight thats for sure...!!!! I wish your well in your battle with this thing xx

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  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited February 2010

    Hey gals-just wanted to give you all hugs.  We are all floored when we get the devastating news that we have DCIS.  It is a natural reaction, and we all remember how hard we cried digesting the news and then sometimes having to make the decision between lumpectomy and mastectomy.  I had a unilateral mastectomy in Sept 08.  The waiting and decision making was worst than the actual surgery.  In Jul 09, I opted to remove my other breast instead of revision.  I just had my exchange to silicone implant two weeks ago and developed fluid buildup.  It normally doesn't happen, but things do sometimes go awry with reconstruction. The thing is you deal with what you have to and get through it.  There will be up and down days.  Days when you cry that you miss your breasts and the old you before cancer.  And good days that you realize what strong women you are and how you learned to appreciate the little things in life and not to worry about the small stuff.  Although in some sense, I am still going through this, and dealing with my own complications, my days are mostly happy.  I don't dwell on my DCIS unless I really need to most days.  All said and done, although I have had my share of complications with surgeries, I have never once regretted my decision to have both my breasts removed.  Yes, there are days when i miss some things about them like the sensation.  However, the peace of mind I feel far outweighs any attachment I felt to them.  You will all come out walking strong and be fine.  My prayers are with all of you.  

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  • olivia218
    olivia218 Member Posts: 257
    edited February 2010

    I remember when the Dr called, yes you read that correctly, called to tell me it was DCIS in one area.  He told me he wanted to get an MRI - I followed up had the MRI and then I received a call to come in. My heart was in my throat because they asked me to come in for a Saturday appt.  I had a second biopsy that day and then waited ten more days to find out it was in multiple quadrants and was quite large.  I went to see my primary physician to ask for advice and she actually gave me the copies of my path reports.  I read through them carefully with her and she was the one who told me the biggest concern was the multiple microinvasions because DCIS would remain in my breast tissue but the microinvasions were questionable.  Since I am small chested there was no way a lumpectomy was going to be possible.  I had a mx Feb 3rd.  It is not in the sentinel node but the path report indicated there were not clear margins, less than 1mm and the microinvasions were determined invasive but less than 1mm.  SO now what?? I have an appt with the oncologist on March 11th to find out next steps.  Since I had immediate reconstruction because I did not even know unclear margins would be a possibility I am in limbo.   

    The first time I think I stopped long enough to realize what was going on was just a few days ago. I think I have been in denial until just a few days ago.  I finally cried about what is going on. 

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  • joyko
    joyko Member Posts: 104
    edited March 2010

    Many thanks to all of you for your support and kind words.  I am finally allowing all the news of last week to sink in....have spent many hours/days trying to come to terms with all that I have heard over the past month.  Can't believe that one month ago today - my life was 'normal' - and it all changed on February 2nd!  

    Anyway --- tomorrow I will be having the MRI done - and a consult with a second breast surgeon.  I fear that every time I take another step --- I get hit with more bad news...which makes me so fearful of tomorrow.  I just want to move on and get this out of me.  I know that after tomorrow I will need to tell my four sons --- which also has me filled with anxiety.  

    You are all amazing women for what you have been through --- and the courage you display.  Thanks for listening ----  

      

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  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited March 2010

    Your MRI is going to be fine. It may show that the DCIS is more extensive than previously thought, but you have decided on a bilatral anyway. It is natural to feel at this stage that every step is going to bring bad news. MRI is a common procedure before surgery. And sometimes they show kind of funky things that turn out to be nothing. My MRI showed a lot of calcifications that they thought was part of the DCIS. After my surgery, the postop report showed that the entire area wasn't DCIS. Breathe-it is ok to feel anxious but think positive. I have teenage children too and a 14 year old. I explained to them that DCIS was noninvasive, but I was choosing to have my breasts removed so hopefully I would have less problems in the future. They are more resilient than we think. It is amazing how supportive the family gets when "mom is down." I know it is difficult, but unfortunately sometimes I cried in front of them too. There are so many emotions to deal with. It is completely normal. Hang in there and try to keep busy today to keep your mind from wandering.

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