Unsure about chemo

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SpaceCowboy911
SpaceCowboy911 Member Posts: 4
edited July 2016 in Chemotherapy - Before, During, and After

I posted this somewhere else, but it was suggested to me to try in this topic, so...

I was recently diagnosed with BC on May 27 2016. I had my lumpectomy and have pathology report. Dx with IDC, tumor size is 1.2cm. ER and PR positive, both at 100%, and HER2 negative. As for the rest of the other information, I fall in a very grey area, so I'm looking to be armed with opinions and info/experience before I go in to see my chemotherapist and radiologist for the first time to discuss all my treatment options.

I had 2 nodes removed for biopsy and the sentinel came back positive with LVI (I understand this is a given since it went to lymph node), but the largest size in SNL was 0.21mm which puts it on the cusp of actually only being ITC (which is no bigger than 0.2mm), and the other node came back negative. I was told I was grade 2 with tubular formation being 3/3, nuclear pleomorphism 3/3 and mitotic rate of 1/3. Based on my research, the mitotic rate is the most important factor of the three, and I actually found a recent study/article from Suadi Arabia that stated that even though my grade at 7 is on the border of being grade 3, with the mitotic rate being 1, my grade can also be interpreted as grade 1, which is weird since it's actually on the border of being the higher grade.

According to my surgeon, there was no extra nodal extension and she removed all 'the cancer' with excellent margins, and based on this, I have no BC in me, which to me just means that she was able to remove everything and I understand this has no baring on recurrence, 'new' cancers or metastases. I was also gene tested, which came back negative. As for oncodx testing, although I am familiar with this test and what it does/means, no one has mentioned this test to me as of yet.

My surgeon stated that I am stage II because of lymph node, but a lot of web sites state that if it is only ITC or micro metastases in 1-3 nodes, my stage is considered 1. Honestly, I think I want to be treated as a higher stage and grade, but for peace of mind I like thinking it is stage 1, grade 1. Any thoughts based on your own diagnosis'?

Anyone else find themselves in this 'grey' area, and did you chose chemo? I am definitely doing radiation and hormone therapy (although no one has discussed which ones or when I start yet), and am not afraid of chemo, although I don't look forward to side effects. I want to have the highest survival rate I can get and the lowest recurrence rate I can get, and feel relatively confident of no metastases. People buy lottery tickets with less than a 2% chance of winning, so I don't see why I wouldn't do chemo even if it only marginally raises/lowers my corresponding percentages. Any advice? Right now, my biggest fear is distant metastases. I am considering double mastectomy, and know that radiation may not be needed if I do... but will find out more about that later.

SpaceCowboy

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Comments

  • Greyt2mphrn
    Greyt2mphrn Member Posts: 103
    edited July 2016

     I would do chemo because of the lympho vascular invasion. I am (still hopefully) Stage II with 1 node with a micromet out 7 nodes sampled. I did not have LVI and am grade 2 with mitotic rate of 1. Chemo was hard on me but I was ill from the beginning and it only got worse as we went through surgery and chemo. It has been over a year and I am just starting radiation therapy which all my doctors are afraid I won't survive. Long story short- no one knows what will happen in the future but we can do all we can and throw everything at it. And pray every day it doesn't come back. You are considered cured if you die of something else. Go for it!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    I would definitely do hormone therapy, not sure chemo. What about radiation on nodes and hormone therapy no chemo?

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  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2016

    I think it boils down to not only what advice you get here and from your docs, but what will make you feel most comfortable. There are some stage I like my second cousin who threw the book at it despite she was told can skip chemo. She did it for peace of mind. Was it a good idea? Who knows. The only thing that is a very good idea to do is the hormone tx if you are ER+ esp of the higher %. I'm 95% so it's a no brainer for me.

    I feel sorry for stage I people who are on the fence. While I"m not thrilled being stage III, the only thing that was "good" about my stats is it seemed like a no brainer that I do it all. I can't imagine making a call as stage I. GL

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  • mimi2014
    mimi2014 Member Posts: 7
    edited July 2016

    What is your Ki67? Would you be able to have an oncotype tested?

    If your lymph node only has ITC, I think skip chemo would be fine, but for LVI, I think it would be better to get chemo.

    I'm still indecisive on chemo myself mainly due to my oncotype score. My lymph node has ITC, but no LVI.

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  • SpaceCowboy911
    SpaceCowboy911 Member Posts: 4
    edited July 2016

    I"ve read in several places, but of course can't remember where, that lymph node involvement without LVI is considered a false negative? And thank you all for responses! I will definitely do hormone and radiation, I just haven't spoken with an MO yet so don't know the plan.

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Space, keep in mind there is a window of opportunity for Chemo as well. I'm waiting to make my final decision too, and was diagnosed in May, Surgery in June. It's better to get chemo within 60 days of your surgery date. Some women are told it's too late after enough months have passed. Here is an article on the window for chemo.

    http://www.breastcancer.org/research-news/timely-treatment-improves-survival

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Lisey:

    The article featured in the article you linked to does not stand for the proposition that it is better to have chemotherapy within 60 days of your surgery date.

    Time to chemotherapy was defined as the number of days between surgery and the first dose of chemotherapy

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Lisey:

    The article featured in the summary you linked to does not appear to stand for the broad proposition that it is better to "get chemo within 60 days of your surgery date."

    The article is about timing of the initiation of chemotherapy or "time to chemotherapy". In the study profiled, time to chemotherapy was defined as "the number of days between surgery and the first dose of chemotherapy." In addition, the abstract states:

    2016 paper from Chavez-MacGregor Group: http://oncology.jamanetwork.com/article.aspx?articleID=2474437

    "Compared with patients receiving chemotherapy within 31 days from surgery, there was no evidence of adverse outcomes among those with TTC of 31 to 60 or 60 to 90 days."

    You may be thinking of a different paper, such as this earlier 2014 paper, also from the Chavez-MacGregor group:

    2014 paper from Chavez-MacGregor Group: http://jco.ascopubs.org/content/32/8/735.full.pdf

    Colleoni commentary: http://jco.ascopubs.org/content/32/8/717.full

    If you read the 2014 paper or the accompanying commentary, you will see it does not say that the optimum time to start chemo is 60 days in all patient subgroups. The commentator viewed the results as "hypothesis generating," meaning further study is needed. Also, despite the findings of this 2014 paper, their later 2016 paper states (lines 1-2 of the abstract):

    "However, the optimal timing of chemotherapy initiation is unknown."

    As I noted yesterday, most studies in this area are retrospective and have limitations. In addition, the results of various studies in this area (for example, the two studies above) are not consistent with each other in all aspects, and there are some important differences among sub-groups (e.g., triple-negative). Thus, regarding timing of the initiation of chemotherapy in their own case, patients should always seek current, case-specific expert professional advice, to ensure the complete body of evidence, including the most recent and reliable data that is applicable to their particular situation and diagnosis, is considered.

    BarredOwl

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  • Totallytubular
    Totallytubular Member Posts: 62
    edited July 2016

    really sorry about this news space cowboy, am not familiar with all of your tests, but as mentioned above..

    Can you get an oncotype score? If it's low.. You wouldn't need chemo! Which could be Exciting news.

    The rest is hard to guess. The test is $4500 but they will cover it ONCOTYPE DX

    If you cannot afford it or insurance cannot cover it. Takes 2-3 weeks to come back.

    Always good to have second opinion on treatment plan If possible helpful.

    Chemo is difficult... But you will survive it.

    Good luck!

    Mary


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