2nd dx, same side but different?

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mebmarj
mebmarj Member Posts: 380

Original dx dec '03 IDC stage I, no nodes. ER-/PR-/her2-. Did 6 CEF, 33 rads after lump, re-ex & snb.

New lump in feb '11. mammo didn't see it, US thought it wasn't cancer but with history, biopsy advised. Biopsy done and it is cancer again. This time "slightly" er+/pr-/her2-. Had bilateral mast last week and am delaying recon. Still waiting on BRCA status. Had pet that showed hot ovary. US showed it and uterus enlarged. Been advised to have hyst soon, then chemotherapy.

Anyone been different er/pr on second time around with neg brca?

Thanks and God Bless.

Comments

  • She
    She Member Posts: 503
    edited March 2011

    Hi Marj, sorry you're on round #2, it sux.  I've had 3 entirely different BC's - how freaky is that! 

    #1 IDC TN AC & Rads Stage IIb Lump/Re-ex/Aux Dissect  Rt side

    4.5 years

    #2 DCIS/IDC Stage 1 Lump/Re-ex/Aux Dissect Rads & 15 mths tamoxifen Lt side

    8 years

    #3 DCIS/IDC Stage 1 Lt side   BMX/DIEP no longer surgically viable, margins not clear no further TX

    Haven't bothered with BCRA, I already know I'm a petrie dish for BC.  Not going to worry about it. I'll dance with NED while he'll dance with me and deal with it again if it comes back.  If I follow the pattern it will be at least 16 years until I have to face it!

    Edited to add I'm now almost 15 years out from #1.

  • Suze35
    Suze35 Member Posts: 1,045
    edited March 2011

    I didn't have two separate incidents, but my two tumors were different. One was truly TN, and the other was slightly ER+, 3%. I was treated as TN, and interestingly, the TN tumor was completely gone after chemo, while the other shrank, then started to regrow at the very end. I will be doing Tamoxifan after more chemo/rads although it isn't standard for such a small amount of ER%.



    My doctor believes that tumors can change pathology, so yours may have started more ER+ and was moving towards TN when you found it. Just a theory though.

  • char123
    char123 Member Posts: 82
    edited March 2011

    Hi MED:  First time ER/PR + very much so. Had MX.   Did TX 2 years then Aromison 3 years.  that was 10 years ago.  last year, exact same place just under the skin started to grow.  I was Dx with Triple negative..Had surgery, chemo and radiation.  My implant held up well through radiation even though it is 10 years old..I was told this does in fact happen.....

    PS: yes, I was negative for BRCA

  • mebmarj
    mebmarj Member Posts: 380
    edited March 2011

    I am praying for brca neg. It's horrible enough to do this twice, but thinking I may have passed it on in the genes really scares me for my kids. I don't think they remember the first time much, both were very young. Now one is a preteen and the other in high school...

    I know I can do this treatment. There is so much I want to see and do still!

    Thanks for you responses :)

  • seagan
    seagan Member Posts: 166
    edited April 2011

    I'm BRCA 1/2 negative and had DCIS and IDC that was highly ER/PR+ in 2009, stage 1, for which I had lumpectomy and radiation.  Two years later (this year), a mammogram found DCIS in the same breast and it turned out to be ER/PR-.  I don't know if it was TN, though, as they didn't check for HER2 status because it was "just" DCIS.  I had a bilateral mast this time around.

    I asked my oncologist if this was considered a recurrence or a new primary, and he referred to as recurrent DCIS.  He said it's possible that this ER/PR- DCIS was there even when I was first diagnosed, and that it was basically a failure of the radiation to get it all.  Evidently breast cancers can be quite heterogeneous, with ER/PR+ and ER/PR- negative lesions simultaneously existing even on the same side.  In my case, we'll never know if this recurrent DCIS was there in 2009 or appeared later, as they never checked the original DCIS for hormone status (they focus just on the IDC if it's present, evidently). 

    I find I don't know how to think of this new and different cancer this time around, or what to think about the ER/PR status being differently.  Either way, though, it worries me that it came back in 2 years, even as I'm grateful that it wasn't invasive this time.

  • mebmarj
    mebmarj Member Posts: 380
    edited April 2011

    Wow, seagan, You are just about as lucky as I am.

    Got my brca results and I'm negative. Still trying to wrap my head around all this. I had seven years between my dx. They are thinking mine was a new primary, now I'm two weeks past my bmx.

    Looks like a hyst scheduled for end of April and after that will be chemo.

    How are you feeling physically?

  • seagan
    seagan Member Posts: 166
    edited April 2011

    I'm doing well physically, probably because I didn't do any reconstruction (may do it later, not sure) and am fairly young (44) and otherwise very healthy.  As long as I do the rehab exercises and get enough rest, I feel good. I'm now about 7 weeks out from my BMX.

    Emotionally, I think I'm more afraid of the cancer now, even though my oncologist says my prognosis is unchanged.  Still, he's ordered a bone scan and CT scan for next week, to confirm for both of us that I'm still "cancer-free," and now I'm all nervous about what those could show.  I once heard someone on these boards use the term "scanxiety," and that's exactly what I've got going right now!

    One thing I meant to mention initially:  even though I tested negative for BRCA, I have a very strong family history.  Mom, maternal aunt, maternal grandmother, and maternal great-aunt all died of BC.  So even with my low-ish Oncotype score (18) and all the other ways they say my cancer is low-risk for recurrence/mets, I struggle with the plain fact of my family history.  My mom's pathology report looks eerily similar to mine, and she died 5 years later. 

    Hope you heal up well from your BMX -- the two big corners I remember turning were getting the drains out and the 4 week mark.  May yours go even better!

  • mebmarj
    mebmarj Member Posts: 380
    edited February 2017

    Totally understand the scanxiety.
    Yeah, I think I was scared last time of the unknown. This time it seems like it's worse in a way, maybe because I know what I know and there are still delays.

    Ugh. They say time flies when you're having fun. Well this is no picnic.

  • rem9939
    rem9939 Member Posts: 21
    edited April 2011

    I too have just been diagnosed with 2nd bc in the same breast, I had 1st bc 16 yrs. ago had lumpectomy, radiation and chemo.. I just had bx 5 weeks ago with diep surgery. I do not want to go thru this again, it just sucks.. I am now on hormone therapy, I am wondering why my onc. never ordered an MRI or a pet scan, do you think this is something I should insist on?

  • mebmarj
    mebmarj Member Posts: 380
    edited April 2011

    Never MRI or pet last time or this time?

    I know 7 years ago I didn't have either one then.

  • kareenie
    kareenie Member Posts: 339
    edited April 2011

    My original Dx was ILC in 1994, MRM no rads, recurred in 2009 in axilla/chestwall, not even in lymph node but near/invading pectoral muscle.  The original pathology of the needle biopsy in 9/2009 was ductal.  I thought that couldn't be right but later had the slides re-read at a university; they said it was ILC.  Final pathology after wide local excision was ILC.

    I guess my point is that you could get a second pathology opinion since there is a difference.

  • tigsun
    tigsun Member Posts: 177
    edited April 2011

    I had two different types in the same exact location.

    Dx 03/01/2000 age 29 Infiltrating ductal ca, grade III Stage IIA, 2cm, Negative Sentinel Node, Lumpectomy ER-/PR-/Her2- 4 Rounds of Chemo Adriamycin/Cytoxan finished 06/2000 Radiation finished 08/2000 BRCA2. Dx 3-1-2011 age 40 - DCIS ER/PR+ while on tamoxifen for BRCA2. 

  • bak94
    bak94 Member Posts: 1,846
    edited April 2011

    Hope you don't mind if I jump in with a question! I have been diagnosed a second time with tripe negative in opposite breast, with mammary nodes involved. One oncologist suggested 12 weekly treatment of abraxane after surgery and another wants to do  AC since it seemed to work the firstime. Weird thing is, he says he administers it in the hopsital very slowly over a 24 hour period to reduce all the heart complications and monitors the heart the whole time. I have never heard of doing it this way, but he said MD Anderson, does this quite often. Oh, and it is dose dense with 6 rounds! Help! I need to make some major decisions and I feel one onc. is not aggressive enough and the other may be too aggressive? I had AC followed by taxol last time. The AC onc said I can still have more AC, he has all my records from the last time, so he know how much I had.

  • mebmarj
    mebmarj Member Posts: 380
    edited April 2011

    I was triple neg the first time. Did CEF, 6 rounds. Rads too but no node involvement.

    This time er+ slightly, so I'm in a holding pattern til I see the onc again.



    If you are torn, get another opinion? If not, you might try posting your situation as it's own topic in the TN forum? Gosh, wish I could help more.

    Take care of yourself, best wishes.

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