Triple positive recurrence after originally ER/PR+ HER2 -

lili1977
lili1977 Member Posts: 11
edited March 2016 in Just Diagnosed With a Recurrence or Metastasis

I was diagnosed in 2013 at age 35 with stage IIa IDC. SLNB was negative, but oncotype was borderline high (30). Pathology was ER/PR+ and HER2 -. Had bilateral mastectomy, reconstuction, 8 rounds of chemo (AC/T). Started tamoxifen in early 2014. I was just diagnosed with regional recurrence in my right axillary lymph nodes, and the pathology was triple positive.

Interested to hear any other experiences with HER2 status changing from negative to positive. Herceptin seems a given, but did others who have this happen also have to get chemo?

Thanks in advance!

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  • bevin
    bevin Member Posts: 1,902
    edited August 2015

    HI, I am sorry you are facing this. I don't have any input but wanted to stop by and send my prayers. Others with similar experience will be along soon to chime in.

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2015

    I was treated in late 2013 and was ER+, PR+ and HER2-.


    I had a recurrence in February (found lump in January 2015) and there were 2 lumps, quite a bit apart. They both were ER+ but PR-. The HER2 was equivocal this time and it ended up negative with teh FISH test. The pathology can definitely change. First time the oncotype was 16. This time they tested only one of my tumors. It had a Ki67 of 20 and an oncotype of 40! My other tumor had a Ki67 of 40. I think it is probably best I do not know how high the oncotype would have been on that one. I also had BMX, reconstruction, chemo (TC), and took Tamoxifen.


    I am sorry you are dealing with this beast again. I just finished chemo and will start rads this week. I will then take an AI for 10 years. You may have to dig deep, but you CAN do this. Feel free to PM me.

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  • lili1977
    lili1977 Member Posts: 11
    edited August 2015

    Thanks KBeee for sharing. It's been a little exhausting with the tests and appointments since the recurrence. But I know I can beat it again! My daughter was 9mo old the first time I was diagnosed so she really didn't understand as much. Now she is almost 3 so I have to be a strong role model!

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2015

    One. day. at. a. time. That is how I have plowed through the last 6 months and how I'll head into the next couple. So far it has (usually) worked. You can do this. But it sucks that you have to again.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .


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  • hyphencollins
    hyphencollins Member Posts: 109
    edited August 2015

    Lili, I'm sorry to hear of your occurrence and wish you the best and KBee, happy to hear you're done with chemo...Did want to chime in to Tectonic's post. My nodal tumor was tested also to make sure it wasn't HER2 positive. It wasn't (although it was PR-). I agree with Tectonic that testing the nodes makes sense...not sure if it is standard or not. (I do know that my MO requested it AFTER the initial surgical report, it wasn't done initially).

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  • lili1977
    lili1977 Member Posts: 11
    edited August 2015

    thanks ladies. Good point about testing the nodal tumors. Interestingly, in 2013 my sentinel lymph nodes were negative. So this recurrence in my lymph nodes is a little surprising. I had a second opinion yesterday. She thought the HER2 was borderline so it is going to be re-read. To your point, tectonicshift, she said that if it was her2 positive it would be more likely to have spread elsewhere so she's hoping it will end up negative.

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  • vfh123
    vfh123 Member Posts: 9
    edited November 2015

    Dear ladies,

    At first sorry if my english is not perfect, I am from one small european country.

    I was diagnosed in 04/14 with IDC and DCIS, stage 1, axila dissection 0/26. I had masectomy and silicone implatant. 6 AC chemo, Er/Pr+ HER2- and tamoxifen.

    I felt a smal lump in axilary tail short after treatment. They said it was cyst. A month ago biopsy confirmed it was local reccurence of DCIS with invasive component. Lump was 1;0,8 cm and invasive part was 0,4;0,7 cm. This time triple positive. Ki 67 is 16,4% and no vascular invasion. Scans are clear.

    I think that they will give me chemo, herceptin and maybe radiation.


    I dont understand, if there is no vascular invasion and if I dont have axila is it possible to go somewhere?

    I am only 32 and have a boy who is 4. I have to be ok for him and my husband.

    Is there chance for long term survival at this point? I cant find long term survivors with local reccurence short after treatment.

    Thank you all.

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  • lili1977
    lili1977 Member Posts: 11
    edited March 2016

    vfh123, I'm sorry I have not been on here in so long to reply. I hope you are doing ok. I have just finished chemo and radiation for my local recurrence. I will continue Herceptin for a total of one year. I am still confident for a good long term prognosis. Stay strong for your son

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2016

    I also am doing well after a local recurrence which occurred quickly. Sorry you are dealing with this

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  • gindugirl
    gindugirl Member Posts: 47
    edited March 2016

    Hey lili1977 - I am kind of similar to you. I too had a stage 1, low grade, negative node and low oncotype IDC in 2014 when I was 40, and it just came back in my axillary lymph node. So far, the path of the biopsy is ER/PR+ and Her2 -. But I have surgery this Monday and I will be curious to see the path of the entire tumor. I didn't take chemo the first time and I'm terrified of it. My MO says I may be able to get away with only Tamoxifen and radiation. I'm curious what they say to you?? I think if the HER2 comes back definitively, then I think they def advice chemo. I also have 3 little ones under 6, so I'm with you on the difficulty of this. We all just have to keep pushing through.

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