Multi-centric question

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comingtoterms
comingtoterms Member Posts: 421

Did anyone with a multi-centric diagnosis have all of their tumors tested for ER/PR/Her2? Mine were in diffferent quadrants and I never understood how a decision could be made about treatment based on the pathology of only one tumor. I had five lesions all together. Thanks, Tammy

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited February 2012
    Hello. I think I had three lesions.  Unless the 1.6 lesion was NOT the 1.3 lesion, than I had four lesions (sorry to confuse).  I am agitated that I really don't know this.  And no, they did not test all of my tumors.  Only the largest one.  I have often wondered this as well.  Even now, I consider having a second pathology.  I really do feel all tumors should be tested.  However, I know that my largest tumor was 1.6 (I assume this was the 1.3 one they biopsied earlier), the next one was .5 (this one actually was in the initial biopsy) and the others were even smaller.  The majority of my issue was high grade DCIS (7 cm) but as this is not invasive (and yet it was), that number did not factor in for me. I see that you are even farther back than me and you also wonder about this still Frown
  • comingtoterms
    comingtoterms Member Posts: 421
    edited February 2012
    Hi Kathleen, I guess it just goes to show that the questions never really go away! I almost feel like I am so far out of treatment that this is like going backwards, but I am also in the middle of making a major decision about shutting down my ovaries and feel that knowing everything I can will help me make the best decision for me. I have SOOOOO many questions about things that just don't seem right to me. Thanks for responding!  Tammy
  • Houndmommy
    Houndmommy Member Posts: 377
    edited May 2012

    I had 4 tumors and they told me that they did test all for ER/PR HER2 - I asked because it wasn't clear that they had tested all of them.  For the oncotype they only tested the largest and my treatment (no chemo) was based on that.

  • Rocket
    Rocket Member Posts: 1,197
    edited May 2012

    I had three tumors in different quadrants, and each were tested for ER, PR and HER2. Only the largest was tested for the Oncotype because all the tumors were histologically similar. I have heard of other women having two separate tumors tested using the Oncotype and resulted in different numbers. I don't know if hers were histologically similar however.

  • comingtoterms
    comingtoterms Member Posts: 421
    edited May 2012

    These are great answers. I am wondering if sometime in the year 2010 the testing protocol changed because there was never even an option for me in 2009. It is something I will always wonder about and unfortunately, will never get the answer to. Is it odd that for both of you the tumors were histologically similar? Is that what is expected and therefore why they typically don't test all of them?

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2012

    Tammy, I had 4 lesions taken in two separate surgeries in 2008.   All were tested, except the smallest one, which was too small (1mm) to test for Her2.  What was interesting to me is that mine were a mix of IDC, ILC and Tubular.  Also, the ER/PR varied quite a bit in them, which seemed odd, but the Her2 was consistently negative in the ones that were tested.  Do you know if all of your 5 lesions were all the same type of bc?    

    I never had the Oncotype-DX because it wasn't commonly done for node positive bc back in 2008, and my insurance company didn't authorize it at the time.      Deanna

  • Rocket
    Rocket Member Posts: 1,197
    edited May 2012

    Comingtotems, I had asked my MO why the three tumors weren't oncotyped, and she checked with the pathologist who stated that if they were histologically similar, they didn't need to test all three, and that they should have the same Oncotype score. I can't say I believe that answer, but it's the only one I was given. If my gynecologist had paid attention to my concerns that I had two thickened areas in the same breast for five years, and hadn't instead told me it was fibrocystic breast tissue because nothing showed up on my yearly mammograms due to my extremely dense breasts, I might not have had to make the decision to have chemo and rads. If it were caught sooner, I might have only needed the mastectomy. Each of my three tumors was HER2-, but there was some concern at the beginning that they were HER2+. I needed to have two different tests to determine that as one was inconclusive. They were all ER+/PR+, but they were all mixed ductal and lobular types - a veritable cancer soup! I was extremely blessed to have no lymph node involvement, especially with larger tumors (3.9 cm, 2.1 cm and 1.7 cm). I had an 83% chance that they would find cancer in my lymph nodes, but out of 13 nodes, no cancer was found. For me it was a miracle!

  • comingtoterms
    comingtoterms Member Posts: 421
    edited June 2012

    All of my tumors were tested and I, too, had a "cancer soup"! What wasn't tested, however, was the ER/PR/Her2 status of each tumor.

  • grejulian
    grejulian Member Posts: 7
    edited June 2012

    Hi everyone - i am new to this forum and need some advice.  I was just diagnosed 11 days ago with DCIS after having had breast pain / painful swollen lymph nodes for about 9 months. (long story but in Oct last year my OB/gyn told me it was nothing.....pcp ordered a dx mammo finally).  Anyway - my surgeon indicates that there should have been no pain with my diagnosis and it is not in my lymph nodes..........and i am wondering how they know this.  they did an MRI and it showed no lymphadenopany - however - the lymph nodes that i am concerned with are in my underarm....did the MRI show those lymph nodes?   I really dont want to have a worse problem than stage 0 BC.......however - my body and intuition are telling me they are missing something.  Does anyone have any advice on how to discuss this with my doc?  I want to make sure that I get the right treatment and can put this all behind me.  Anything you can provide is greatly appreciated!!!!  (Good luck to you all on this rather uncomfortable and awkward journey!!!)

  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2012

    grejulian... Was your DCIS diagnosed from the mammo only?  Have you had a biopsy?  I'm not sure how any surgeon can say that you have only DCIS without excising the area to be sure.  The reason I say that is, it's not uncommon for a tiny bit of invasive bc to be found within an area of DCIS, which is a non-invasive form of bc.  And anything smaller than about .5 cm may not show up on imaging -- even on MRI.  (I had a 4th, 1mm spot that didn't.)

    Pure DCIS does not travel, so would not be in your lymph node(s).  That part of what you've been told is correct.  What I don't quite get is how your surgeon can be 100% sure your dx is 100% DCIS.

    My best advice would be to get a second opinion, preferably from a breast-only surgeon.  You can find that type of specialist at these NCI-designated medical centers:  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html   Unfortunately, general surgeons (the type of surgeon many women are initially sent to) may not be quite a thorough in his/her assessment.  Don't be afraid to follow your gut instinct and seek a definitive explanation for the swollen nodes.      

    Please keep us posted on what you find out.    Deanna 

  • grejulian
    grejulian Member Posts: 7
    edited June 2012

    Thank you Deanna.  I am seeing a Breast Only surgeon - and i did a lumpectomy after a sterotactic showed ADH @12 and fibrous tissue @10.  The 10 was misdiagnosed with the stereotactic bx and it returned as DCIS after the lumpectomy.   Apparently the margins are borderline so i need to have another lumpectomy in a couple of weeks but I see the rad/onc tomorrow and will discuss further - and see the surgeon again and will attempt to communicate better my concerns. 

    I will keep you posted.

  • Laural136669
    Laural136669 Member Posts: 287
    edited June 2012

    I had a BMX for IDC in the left breast, and an inconclusive MRI finding on the right. It turned out to be ILC on the right. Both tumors were oncotyped, as well as having ER/PR/HER2 testing (done as part of the oncotype testing). The smaller tumor on the right was actually the higher oncotype score which necessitated chemo. Glad I trusted my intuition and not the doc's initial recommendation to do only a left lumpectomy.

  • Rocket
    Rocket Member Posts: 1,197
    edited June 2012

    My OB/GYN kept telling me my three tumors (all palpable) were fibrocystic breast tissue because my Mammograms were normal for five years. I so wish I had followed my gut instinct and insisted that he at least do a fine needle aspiration. He never recommend any other test, and as you can see from my dx below, he was wrong. It could have turned out much worse for me. I'm very fortunate to be alive. Follow your gut - always IMHO.

  • Chris13
    Chris13 Member Posts: 254
    edited July 2012

    I just had a call from the onco, who was at a tumor board discussion of my case. I had ILC, 2 tumors 1.6 and 2 smaller. My oncoscore was 8. But with the size of the tumors, and my age (at 65 too young to say AI only, and too old to say chemo for sure), they decided to oncotype the 2nd tumor. If same low score, no chemo.

     Seems that all large tumors should be tested, not just one. How did they choose the one? Of course I'm  hoping the 2nd tumor is consistent. I think the path on the tumors right after surgery showed all to be low mitosis. Not positive if all the tumors were tested, though. Is that usual? I may have to call my BS for that.

  • Rocket
    Rocket Member Posts: 1,197
    edited June 2012

    Chris, it is standard for the pathology report to test each of the tumors, however it wasn't standard two years ago for them to Oncotype all of them. They only checked the largest of mine. I did however have chemo even though my Oncotype was 16. The fact that your tumors are grade 1 may help you avoid chemo. Mine were grade 2. All my best.

  • shellw
    shellw Member Posts: 3
    edited July 2012

    All of my tumors tested ER/PR + and HER 2 negative

    primary tumor was grade 3 and 2.5 cm - Ki 67 - -65% @ 2 o'clock

    secondary tumor was grade 2 - 12 mm ki 67 - 40% also @ 2 o'clock

    third tumor was grade 1 - 7 mm ki 67 40% at 8 o'clock

  • comingtoterms
    comingtoterms Member Posts: 421
    edited July 2012

    Sooo... if all tumors should have been tested for pathology, then Chris, you are not alone. I had five and only the largest was tested. Or I assume so, because there was only one reference on the pathology report despite lesions in different quadrants.  Tammy

  • Chris13
    Chris13 Member Posts: 254
    edited July 2012

    I believe all the tumors were tested on path, but the oncotyping was only on one. I'm still waiting for the 2nd oncoscore. Fingers crossed it is also low.

  • lisa-e
    lisa-e Member Posts: 819
    edited July 2012

    I had two IDC tumors, in different quadrents.  Both were tested for er/per/her by the pathology lab.  Both were er/pr positive, but one was 99% or 98% er positive and the other only 48% er positive.  I did have oncotype tests on both of tumors and the results were different, 16 for the 48% er+ tumor and 8 for the other one.  I did have to insist on testing both of the tumors.  My oncologist told me he had never heard of insurance paying for two oncotype tests.  I told him I didn't care and to go ahead and order the second one.  My insurance did pay and I was glad to have the info to help me decide with the chemo versus no chemo decision.

  • Chris13
    Chris13 Member Posts: 254
    edited July 2012

    My insurance is paying for the 2nd test or the oncotype company is working it out somehow. A rep of the company was at the tumor board discussion, and according to my MO said they would work things out. Also, when it is questionable about chemo, seems more cost efficient for insurance to pay for the 2nd oncotyping, and save on chemo therapy if that is the best course for the patient. Chemo is much more costly than the $4000 oncotype test.

    Lisa-e, what did you do about chemo with one low score and one intermediate?  My MO recommended chemo even with the one low score (8) but I had a node involved and am at an "intermediate" age (65).

    ILC does tend to be more similar, I think. All had same ER, grade, etc. 

  • lisa-e
    lisa-e Member Posts: 819
    edited July 2012
    Chris13, I decided against chemo.  My onc initially recommended chemo, but that was before I insisted on getting an oncotype score for the second tumor.  (I had a long, drawn out diagnosis).

    What I did was look at the chance that either tumor would cause a recurrence.  That chance came out to somewhat under 16% and chemo would have reduced the rate of recurrence by about 4%.  But that is what I figured the chance of having permanent side effects from chemo.  So I opted out and my onc agreed with my logic.


  • Chris13
    Chris13 Member Posts: 254
    edited August 2012

    Wow, Lisa-e, we had the same scores. My second oncoscore came back 16, recurrence 10. My first tumor was 8 recurrence 6. MO concerned (since I had one positive node and 16 is toward top of low range) but recommended no chemo...she knew I was leaning in that direction. So onto to the AI again.

     Insurance did pay for both, even with the mistake of a wrong sample being sent.  Makes financial sense on their part, as chemo is so much more expensive.

  • comingtoterms
    comingtoterms Member Posts: 421
    edited August 2012

    Does anyone know whether pathology tests can be re-done? I want to know what the ER/PR status is of the other four tumors that were found.

  • Chris13
    Chris13 Member Posts: 254
    edited August 2012

    My two larger tumors were hormone tested after my two biopsies. There should be path results of each of your tumors, even if you didn't have more than one oncotype test done, I would think.

     But if you had one ER/PR plus tumor, my understanding is you will be treated as ER+ even if the other tumors were not....which I believe is rare but happens.

  • Rocket
    Rocket Member Posts: 1,197
    edited August 2012

    All of my tumors were tested. I had multi-centric not multi-focal, so each of my tumors originated separately. They were all ER/PR+ and histologically similar. Each of my tumors was listed separately on my pathology report. I do believe they can test the tumors years later. I don't know who pays for it however, especially if it doesn't affect the treatment regimen.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • w6uqfcgomeo
    w6uqfcgomeo Member Posts: 31
    edited November 2012

    Hi Day:  My name is Mary and I also have IDC, DCIS AND lCIS...don't know yet if I have the LDC yet.  I am interested in what type of sub-type componets you had .  Did you have cribiform or micropapillary?   Hope to hear from you.  Mary

  • Deyrl
    Deyrl Member Posts: 31
    edited December 2012

    Mary, I just found out today that my right side had two entirely separate and unrelated invasive cancers, although my IDC was just 3 microinvasive foci. I had IDC, ILC, DCIS, and LCIS in the right breast, two different quadrants. I haven't met with MO yet, but my margins were clear and I expect no rads and no chemo. My ILC was found with core needle biopsy and I don't know what what the "architecture" of it was. For my DCIS, my path report says, "cribriform and micropapillary," with "central, expansive comedonecrosis." My dad's mom died at 49 of a breast cancer that apparently took over ten years to kill her, from the time she first noticed it. As far as I know she went without treatment until way too late and died in the early 1950s. I'm in my early 40s and still curious if my odd mix of results is linked to my grandma that I never met. (My dad had no sisters and his brother has one daughter who has had no bc so far).



    I'm BRCA negative and waiting on breastnext results from Ambry genetics. I'll be surprised if I get a positive result. Based on my pathology I'm glad I had a bmx.

  • Wren44
    Wren44 Member Posts: 8,585
    edited January 2013

    One of my tumors was ER+PR+ and grade 1, the other was ER+PR- and grade 2. No oncotype on either one. I was 71 which may have been a deciding factor not to do the oncotype.

  • LoriBach
    LoriBach Member Posts: 130
    edited May 2013

    One of my tumors was ER/PR+ and HER2- and the other was ER/PR- and HER2+ - go figure...

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