Chemo or not to chemo???

ForMyGranddaughter
ForMyGranddaughter Member Posts: 294
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Chemo or not to chemo???
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  • ForMyGranddaughter
    ForMyGranddaughter Member Posts: 294
    edited July 2013

    January 2013 I felt a lump in my right breast.  In March went to doctors then to get a mammo and ultrasound.

    The tumor only showed up on the ultrasound, not the mammo.

    The breast surgeon suggested that I get a lumpectomy and radiation.  I didn't want that and decided to get a bi-lateral Mastectomy. That decision was very easy for me to make.  At the time of surgery my sentinel lymph node was tested, the results of the 97% test performed at surgery was negative . . . I was happy!!!  However, two days later I got the news that the 3% test performed on the sentinel node was positive @ .6 micrometastatic.  So I had to have another surgery :(/  2nd surgery removed 16 nodes which were all negative!!!

    Results:  ILC 3.1CM, ER/PR+, HER2 -, stage 2, grade 1

    My Onco score was 17 with a 11% recurrence.  To me 11% was a low number; however, based on the following my Oncologist is suggesting 4 rounds of chemo + Tamoxifin:

    Age: 49, Size of Tumor 3.1, 1 lymph node involved + because this malignancy was sneaky . . . 

    My heart sank; like you I don't want chemo!!!  She wants to administer Taxotere + Cytoxan

    The Oncologist said 4 rounds of chemo will decrease the recurrence rate from 11% to 7- 8%.  A 3 to 4% reduction.  This reduction seems like it's too much.  Other things I read said about 1-2%.  I have to make my decision by next week.  I am getting a second opinion.

    Any comments? 


     

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  • Racy
    Racy Member Posts: 2,651
    edited July 2013

    All you have done so far sounds very appropriate. Get that second opinion and let us know how it goes. You probably don't have a lot of time to decide, as it seems your surgery was a few months ago.

    It is a hard decision. You can look at using cold caps to keep your hair if you do chemo. There is info about that on this site.  Other than hair loss, the chemo itself is not too bad; 'doable' as we say.

    Keep us posted!

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited July 2013

    Hi, hope this helps you...i was also 49 at dx, btw.



    My oncotype was also 17, had two tumors, one just under 2 cm, the other .9mm, nodes negative, though one lab said there may have been a micromet in SN. I had three opinions who were strongly AGAINST chemo. I had a unimx (so no rads) and took tamoxifen, switched to Femara, this past January. feeling well!



    I recommend you get three opinions from dif oncs, preferably at dif hospitals.



    Good luck! Shari

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited July 2013

    Also, obviously your drs know more about this than me, but I was told that size is less important w ILC than idc because of the shape of the tumors and how they are measured.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2013

    There is also some evidence that lobular responds less well to chemo, but it responds well to hormone treatment - have they suggested that for you? 

    I refused chemo and am glad I did, you need to factor in the risk of having chemo too in terms of side effects or residual problems

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    As you can see I insisted on everything with my ILC, but I had positive nodes. For me I wanted that 2% chance, and was willing to risk any side effects (I didn't have any lasting ones). I didn't have the oncotype test since I had + nodes and knew immediately that I was going to suck it up and have chemo.  For me it didn't matter. Others are different. You are your own best health advocate so inform, inform, inform yourself, but be careful of the type of info you look at: many research studies and survival % are years and years old. 

    You're getting good advice on this thread. I also recommend getting (as quickly as you can) at least one more opinion from a reputed Cancer hospital, and be sure to ask for someone who is an expert in BC and knows about ILC and it's treatment and nature.

    Hugs,

    Claire

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  • Amberella
    Amberella Member Posts: 6
    edited July 2013

    I just received my oncotype score: 17, just like you. My MO says that chemo will not materially change the recurrence risk and strongly recommended against it. I didn't want to do it anyway, so am now moving on to radiation for the lumpectomy. I have moments of panic when I worry that I'm not 'doing enough' (my sister had the exact same BC three years ago and had BM, 6 months of chemo, radiation and tamoxifen), but everything I have read confirms that my conservative treatment has the same disease free survival as more rigorous approaches. I think it comes down to what you can live with moving on from this point.



    My major issue with chemo was some of the potentially permanent side effects (especially chemo brain, which is my most major concern about tamoxifen too). I don't have children and my sister does, so I think for her, living a long life with them is the most important thing. Also, she didn't have access to the oncotype test.



    Whatever you decide, good luck with the treatment.

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