Worse results from surgery than anticipated

neeliecar
neeliecar Member Posts: 73
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I had my lumpectomy last Wed, the 29th. Though everything went well, healed fast, lymph nodes supposedly clean and thought all I had to do was radiation. Last night my surgeon called me & told me that the Invasive Lobular Carcinoma is a nasty sneaky cancer and that now it is pretty well through the whole breast and another lumpectomy would probably not get it all. I was originally going to do a mastectomy but she thought this was the way to go. Now she is telling me that the front and rear margins were not clean. The rear one is very close to chest wall and the lymph node in my breast had a few cancer cells. My axillary lymph node was clean. I am Est/Prog + and HERS negative. Now she says I will probably have to do Chemo for 16 weeks and radiation for 7 weeks after mastectomy. Has anyone faced this type and these circumstances before and how did it turn out. I am scared to death. I have cried til there are no tears left. Someone please give me some hope. Eileen

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  • trigeek
    trigeek Member Posts: 916
    edited September 2007
    neeliecar,

    I am kind of in the same boat with you sis at the end.
    My surgeon had suggested lumpectomy but I went with bilateral mastectomy and voila my breast was indeed riddles with several other sneaky lobular modules.. the other one was clear. I have 2 out of 6 sentinel nodes testing positive and chemo is in order for sure.. working on the logistics of radiation(I really do not want to do that!!). Have 2 oncologist appointments next week.
    Crying is good, ( I can not cry cause my mom is with me her heart will break I wish I could ) get it out. Too bad you will have the extra surgery but although lobular is sneaky it is said to be really responsive to treatments.. So I guess we'll go through with this together with you.. what do you say ?

    Love ! Take deep breaths and be strong email me if you want to triagain2002@yahoo.com
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  • Joy232
    Joy232 Member Posts: 97
    edited September 2007

    Nelliecar,

    Sorry to hear you are going through this.  I had the lobular and went through the mastectomy, chemo and radiation as well.  What stage are you?  Have you asked if they can try to shrink the tumor with chemo or hormonal therapy before the mastectomy?  Sometimes this saves the breast.  Maybe a second opinion would be worth checking into. 

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited September 2007

    I was diagnosed with ILC in February and had a bilateral mastectomy in March.

    I had lymph node spread and it even went outside my nodes.

    Lobular is called "sneaky" because it is hard to detect by imaging studies. But it is also known as the "lazier" one when compared to ductal cancer. It tends to grow at a slower rate, even if the tumors get large that is not a prognostic indicator of a bad outcome.

    I will bet you are scared! But this is a totally treatable cancer and you will be followed up for years with anti-hormonals which have been proven to be extremely effective in keeping lobular cancers at bay.

    I am in chemo and still have another two months to go.

    I am happy to help you out any way I can.

    Once you get your surgery behind you, trust me you will feel better.

    I actually felt good when my bilateral was over because I knew the cancer was GONE.

    The chemo is now doing clean-up duty for any stray cells that decided to hang around.

    Hugs to you,

    g 

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  • jpsgirl96
    jpsgirl96 Member Posts: 240
    edited September 2007

    I also got surprises every step of the way.  First, DCIS with 'micro' invasion, left breast.  MRI ordered b/c that's the protocol for my surgeon and it led to biopsies that found ILC right breast. Sentinel node biopsy at the same time as bilateral lumpectomies - positive on the right.  Axillary node dissection 4 wks later - 5 more positive nodes.  Had chemo (TACx6), radiation (33 days - both breasts) and now on anti hormonals.  A year from finishing rads - feel great, all is well - you just get through each day, each procedure, one at a time.  You CAN do it - come here for support...Leigh

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited September 2007

    Neeliecar it is always hard getting unexpected news but know that there are very many of us that have already traveled that road who are here to help you along your road, answer questions or just listen.

    Lobular is very sneaky. My Lobular remained hidden for over 5 years while I was being treated for a ductal cancer in the opposite breast. Never was picked up on any mammograms or ultrasounds. I had bilateral mastectomy, chemo and radiation and am now 18 months out of treatment.  Life is good again even with the knowledge that I must be ever vigilant with my followup appointments.

    Sue you have many reasons to hope....if only because there are so many of us here who have gone on ahead and can tell you there is light at the end of the tunnel. Feel free to cry, shout, ask questions or whatever helps you to make it through this.  We are here to listen.

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  • lesley_donna
    lesley_donna Member Posts: 24
    edited October 2007

    I too had a sneaky lobular,  I was being treated for ductal cancer, small tumor, 3/10 nodes positive, had mammo and u/s and checkups and less than three years later i palpated a lump, turns out it was an 8cm tumor in opp breast to ductal cancer breast. 19/19 nodes involved and two tumors in other breast as well. 

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  • LizM
    LizM Member Posts: 963
    edited October 2007

    I also experienced worse news after my surgery.  Before surgery I thought I was stage 1 with no lymph node involvment (ultrasound showed 1.4 cm tumor and clear nodes).  After surgery I had a 2.1 cm tumor and one positive sentinel node.  I was very upset and felt I was doomed.  It has been 2 yrs and I am doing fine and you will be too.  Take Care and hang in there.   

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  • Valsul
    Valsul Member Posts: 160
    edited October 2007

    Eileen, all of my stuff came out worse than anticipated and I was so depressed and scared, I thought my life was over.  I should have had a lumpectomy but on the morning of surgery my bs suggested a mast.  I went with it - I just wanted the thing OUT!  So I have had chemo, rads, AIs and Herceptin.  Have done 12 out of 17 infusions of Herceptin.

    You do what you have to do by just dealing with what that day brings be it chemo rads surgery or whatever and one day you realise that you are through it all and making plans for vacations, lovely trips etc.

    You can come through it and it is do-able.  Tough at times, but it hones you and makes you into a new woman - an amazon.

    Big hug

    Valerie S

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  • maryhult
    maryhult Member Posts: 5
    edited October 2007

    Eileen,

        So sorry you have to be going through this.  I was dx in Nov '06. None of my prior mammos or ultrasounds showed the ILC. The only indication that something was going on was the breast tissue started dimpling in. I know how are you are feeling it is so devastating to hear the word mastectomy and chemo. I had a few bx and it was pos in a few diff places in my right breast.  I opted for bilat.  I did chemo(16 weeks..AC and taxol) first to help shrink the tumors. My mast/immed recons(implants) was done in May. The path came back showing the tumor size was originally over 5cm. Because of the size I had to do radiation which I was hoping to avoid. I just finished my 5 weeks of rads on the 27!! What a great feeling. As you can see the whole thing takes a good year.  Have you had the other breast checked out thoroughly? I ask this because other ca cells showed in the other breast per the path report.  I am glad I did the bilat.  Not everyone needs to have both done.  I am also er/pr+ her-.

    It is a long road but you can do it.  You have to and it is very curable.   You have every right to cry, but strength lies within you. Good luck. Let me know what your new tx plan is.  If I can help in anyway, just ask. Smile Mary Ann

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  • CyndieM
    CyndieM Member Posts: 7
    edited October 2007

    Hi Neeliecar,

    I too had ILC - and am now on the other side of my treatment - 3 x FEC and 3 x Taxotere (chemotherapy) and 25 rounds of radiotherapy. I had 19 tumours in the left breast and one benign one in the right... I had a lumpectomy to start with and the margins weren't clear, I'm so glad and relieved that I had a bi-lat mastectomy...

    You can get through this!!!

    If you need some extra support - give me an email:

    cyndie.murphy@bigpond.com

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    Eileen -

    Our situations are similar. Only difference is that my nightmare began 2 years ago. One year ago, I was all through with chemo and rads and started Tamoxifen. What you're dealing with now is the hardest part. Don't worry about the front un-clean margins...those will be rid of during the Mast. The rear un-clean ones will be taken care of by the chemo and radiation. You will have the Mast, chemo, etc. and you will move on to the next chapter of your life. Really...you will! I am a perfect example of this. Since you are er & pr postive, you will have the added security of Tamoxifen or an AI, after all your treatment is finished. Hang in there...the shock of it all is difficult. Think of it this way: you will have new and healthy cells! Best wishes to you.

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  • aepson
    aepson Member Posts: 1
    edited November 2007

    I am in the same situation. I was diagnosed just this week with ILC--stage III.  My fear level is over the top.  I am an older single parent of a 10 year  old to boot.  I've not met with onc until later in the week.  All the news thus far is beyond expectation of the medical provider on the negative side.  The mass was found last year in a routine mammogram and ruled beign.  This year the mass changed, the core biospy was negative.  The lump was removed and ruled malignant.  The surgeon had prepared me for either Stage I or II but not III.  Eight of the 13 nodes were positive.  My fear now is that it has spread to other areas. 

    Hearing your stories of success makes this devastating news better, especially for someone who had never been in a hospital before except to have a baby.

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  • zap
    zap Member Posts: 2,017
    edited November 2007

    Hi:

    You really need to be in a place where there is more discussion.  I just happened to get into this thread by accident and it sounds like you really could use someone to offer you some suggestions.  May I suggest you "visit" Illinois Women Facing Breast Cancer (I know you are not in Illinois) as we are responding all the time. LauraGTO or Rita are good people to contact and they can get you in the right thread.  Where you are there has been no communication since October. LauraGTO is just above you and you could  private message her (pm) and  tell ter Susan from Northbrook sent you. I am not computer literate, but these ladies could get you on the right thread.

    Meanwhile, maybe there are no accidents, so let me respond.  First of all, I am sorry you have todeal with this.  I know it is very worrisome being a mom.  This is probably the worse time as you know so much, yet you know so little in terms of the course of your treatment.  Do you have someone you can confide in?  Do you have someone to go to the doctor's with you.  I was a basket case and my daughter took notes.  Thank god, as I have very little recollection of that day.  I am one year away from it all and I feel good! I was miserable until I got my plan in order.  That included two surgeries,chemo and radiation.  It was tough but I was happy to do whatever I could to fight it.  When I got my plan from the doctor, I began  to  go forward.  Prior to my plan, I was a mess!  I just know you will be fine.  Do work on getting into the right place as this place is great!  You get so much information and the women are so wonderful. Be sure to get back here and let me know how you are doing.  

    Susan 

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  • bbmom
    bbmom Member Posts: 391
    edited November 2007

    aepson,

    So sorry you had to join this group, but you will find a lot of encouragement here. In the beginning it is frightening and you feel so helpless. As you learn more and get a plan of treatment in place it does get better.

    Stay strong and take care.

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