Local recurrence 6 months after treatment.

Neta69
Neta69 Member Posts: 203
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Six months after I finished treatment for IDC ( Lumpectomy, 4x TC, radiation and Tamoxifen) I've been diagnosed again. This time an 8mm lump IDC, gr 2 a cm from my lumpectomy scar. Thats all I know right now. It wasn't visible on mammogram and hardly on ultrasound. Was picked up by MRI after I was told my mammo was clear. I'll see a surgeon on the 14th and I'm going for a double mastectomy, depending on if I'm properly post menopausal or not I may either have my ovaries out or get shots to shut them down as well as switching to an aromatase inhibitor. I'm sad, scared and angry and I would so appreciate any advice or encouragement from anyone who has been where I am today.

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Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2013

    Neta, I haven't been in your situation, but I thought I would stop and bump your thread for you so that hopefully others with similar experiences will see it.  I'm so sorry that you're dealing with a recurrence -- and so soon after finishing chemo & rads. What does your medical team say about it?  Although we can never be sure why or how these things happen, I guess if I was in your situation, I would want to be very certain that nothing was overlooked in your original dx, before continuing with the same doctors.  For example, did you have an MRI?  (It seems like something that's 8mm now would have shown up less than a year ago.)  Was your Her2- determined by FISH?  I would just personally revisit all those diagnostic pieces, perhaps with a 2nd opinion breast surgeon/medical team, just to be absolutely certain that what's happened is an anomoly, and to be very sure any tx recommendations and decisions going forward are on the right track.  JMHO... (((Hugs)))  Deanna

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  • Neta69
    Neta69 Member Posts: 203
    edited May 2013

    Thanks Deanna, good advice. Its being tested for HER2. I was HER2 negative by Fish last time. I have extremely dense and fibrocystic breasts. Probably why it wasn't spotted.

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  • Katz63
    Katz63 Member Posts: 28
    edited May 2013

    My heart goes out to you, you had the same diagnosis and treatment as I did.  I hope you are recovering ok and going as well as can be expected.  Sending love and light to you and your family xxx

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  • BabyRuth
    BabyRuth Member Posts: 264
    edited May 2013

    So sorry you are having to go through this again. I have been where you are and it is a scary feeling. Sending healing thoughts your way.

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  • Neta69
    Neta69 Member Posts: 203
    edited May 2013

    Thank you for your kind words. Trying to keep my hope up and getting ready for surgery this week. I'm having a double mastectomy and my ovaries have been shut down with Zoladex. I'm praying that it hasn't moved anywhere outside my breast. Feeling quite sad and nervous about losing my breasts. I know they have to go, but still..

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  • BabyRuth
    BabyRuth Member Posts: 264
    edited May 2013

    I will keep you in my prayers as you start your surgery journey this week.

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  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Neta, that truly stinks that you have to get back on the rollercoaster. I hope you have a smooth and uneventful surgery. For whatever it is worth, I decided to take it as a wild new experience and did my best not to have any preconceived ideas going into it. It helped me, and although it obviosuly is not fun to lose body parts, I really did not have too bad a time of it all in all. I hope it will be the same for you.

    If you would like to talk to others, there is a forum here for those of us who have had mastectomies, and there is also a wonderful support group on FB, called "Flat & Fabulous."

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  • Neta69
    Neta69 Member Posts: 203
    edited May 2013

    Thamks. Did my pre op today. Fingers crossed it all goes smoothly.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2013

    Good Luck Neta

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  • Neta69
    Neta69 Member Posts: 203
    edited May 2013

    Had surgery yesterday. All went well and not feeling too bad considering.

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  • danawp
    danawp Member Posts: 99
    edited May 2013

    Glad to see you posting already!  Wishing you a good recovery.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2013

    glad you are feeling OK

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  • Worrywart9390
    Worrywart9390 Member Posts: 101
    edited May 2013

    So happy to hear you are doing ok.  Sending positive thoughts.

    angie

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  • BabyRuth
    BabyRuth Member Posts: 264
    edited May 2013

    Thinking of you and sending good thoughts your way! Hope your recovery is still going smoothly.

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  • Neta69
    Neta69 Member Posts: 203
    edited May 2013

    Thanks ladies. Doing ok for now. Trying to get my head around the recurrence and feeling really scared. It was so hard to even start moving on after the first dx and here I am right back at go, or maybe worse. Also worrying about treatment. So don't want to do chemo again!

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  • Nanka
    Nanka Member Posts: 97
    edited June 2013

    Hi Neta...did you get your results from the lumpectomy? I am so sorry it came back so fast! Did you have clear margins on the initial lumpectomy?

    Michelle

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  • Neta69
    Neta69 Member Posts: 203
    edited June 2013

    Well did I ever! What was thought to be one small local recurrence turned out to be 6 (!) separate tumors that most likely were there all along! Less ER positive than last time and higher grade (3). They didn't show on any imaging! Now they are treating it like a new primary and Ill have to do chemo. 4AC + 4T. No cancer in my nodes though. I've had a second (and third) opinion and have since changed Oncologists. I start chemo the week after next.

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  • cider8
    cider8 Member Posts: 832
    edited June 2013

    Dang! Glad you switched oncologists for sure!!! A better plan for sure. Chemo again stinks, but you do what you gotta do.

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  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited June 2013

    Hi Neta, sorry too read about your re-occurrence! I noticed you changed your oncologist, I'm thinking of doing that as well...I've had issues with my treatment care as well. I'd like to pm you for further discussion? Thanks, Jo

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  • Neta69
    Neta69 Member Posts: 203
    edited June 2013

    Hi Jo. Sorry we are both dealing with this crap! Please feel free to pm me.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited June 2013

    Neta - sorry you have to go through this again.  That's just not right.  Are they just calling it a new primary or was it missed the first time, or a recurrence?  Sounds like a different pathology - so maybe a new primary?  Oh my.  Have you gotten an oncotype number yet?  Brca test?

    If it's any consolation, you are beautiful with short hair!

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  • Neta69
    Neta69 Member Posts: 203
    edited June 2013

    Thanks Kam. Won't get to keep what little hair I've got for very long :( chemo starts next week. I'm not positive for the BRCA mutation and they didn't bother with Oncotype as chemo was a given because of my age, grade and the number of tumours they found. The say its impossible to know for sure but most likely the tumors were there the whole time and they missed them. So they decided to "start over and treat me like a new primary.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited June 2013

    Neta - you are definitely the poster child for not trusting mammograms.  What about US and MRI's. You must have had those?  And what about the chemo you already had, did it affect those tumors.  Such an unusual case, though I'm mystified that the pathology changed?  I sympathize for what you must be going through, again.  You are one strong woman. xxo

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  • Neta69
    Neta69 Member Posts: 203
    edited June 2013

    Kam170, I had both US and MRI. All that showed on the MRI was a small shadow. No way of telling if the chemo did anything or not. Who knows, maybe it shrunk them. My MO wants me to do a different chemo anyways to "mop up" after the mastectomy. The pathology of a tumour can change with time. It can even be different from one part of the tumour to another. Or it can be a separate primary with a different pathology to start. Cancer cells change. It's what they do.

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  • LAstar
    LAstar Member Posts: 1,574
    edited June 2013

    So glad your nodes are clear! Best wishes on this treatment!

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