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Trinity789
Trinity789 Member Posts: 55
edited June 2014 in HER2+ (Positive) Breast Cancer

I am confused at what to do... my brca1 & brca2 test were negative but the genetic counselor thinks I have a strong case of family history. So maybe its a false negative. Great..should I be happy or sad that they can't find the mutation? There is so much they don't know and she made that so clear today. My mom had BC at 41 as well. In 1976 she had a double masectomy with no chemo or rads. She is fine! DC insitu and invasive as well as lobular all over. 33 nodes removed with none impacted. I wish they tested for her2 back then.

The onco says I should have chemo and I will. States the chance for reoccurence without them is 20% does that seem right? He stated that once I take them my percent of having a reoccurence is less than 10%. But if it reoccurs its eventually fatal becuase the cells have not been killed off by chemo. Is this true?

I am debating on the doing a double masectomy. With almost all tissue removed the chance of a new cancer goes to less than 1%.

Does anyone know what the likelyhood of a new BC is after chemo?

I have an ovarian cyst the size of a small orange that they are monitoring. The doctors are trying to decide if chemo should come first before they remove the ovary. Anyone have a simular problem? They don't think its cancer but based on my bc they don't want to leave it in there.

Has anyone had a lumpectomy then decided to have a masectomy because they are fearful of reoccurence of a new cancer?

Sorry to ramble... to many things going through my head.

Trin

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  • TriciaK
    TriciaK Member Posts: 362
    edited January 2011

    Hi,

     Just a fyi, you can still recurr either distant or locally after a mast, and a lumpectomy gives the same survival stats with rads although the risk of a local recurrance is slightly higher.

    I think your Dr means (and is saying badly) should at any time you have a distant recurrence  (in a main body organ or bones) it's incurable, what he has'nt told you is that stage iv is now seen as a chronic rather than terminal illness and treated as such. I'm sorry I cant help with the stats as really don't pay attention to them and believe we are all individuals and react differently so who knows what response you'll have???

    My best wishes to you as you make these decisions but be sure you have all the facts you need before deciding !

     I has an aggressive cancer with three nodes positive and had a lumpectomy, should I recurr I'll probably have a mast but don't have one simply to avoid a recurrance as that really is'nt guranteed!

    Tricia xx

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  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Thank you. That makes more sense. Hope you are doing well.

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  • TriciaK
    TriciaK Member Posts: 362
    edited January 2011

    I'm doing fine so far Trinity and for me, the treatment choice's worked so far but it's a tough decision for all of us to be sure.

    I'll be six years out this summer and looking forward to celebrating that milestone!:)

    Tricia x

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  • lago
    lago Member Posts: 17,186
    edited January 2011

    TriciaK is correct. Not so sure you should automatically go for the MX. You can have a local recurrence but the survival stats are pretty much the same as if you had an MX. It's the distant spread outside the breast that can be fatal… but many women do go into remission with other types of chemo.

    Have you considered getting a second opinion. Your BS sounds fine but you might want to hear from someone who can explain things a little better.

    BTW my BMX made sense for me. I had a 5.5cm in my left (A-small B cup) so there was no lumpectomy option for me. My other breast had 4 suspicious areas so we both agreed it should go. Ended up there was some pre cancer (LCIS) so I'm glad I got rid of it too. I also had very dense tissue… as do all the women in my family.

    Typically women with HER2+ invasive breast cancer get herceptin with chemo. I just finished 6 rounds of chemo with Herceptin on Tuesday with 11 more herceptins to go.  I'm doing fine. It's not quite as awful as I thought but I will admit glad it's almost over. 1 more week of a few SE then I can start healing from this.

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  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    That great!

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  • Trinity789
    Trinity789 Member Posts: 55
    edited January 2011

    Hi Lago,

    Glad to hear you made it through chemo. Mine starts on 2/11/11. I will get a second opinion. My mom keeps pushing for an MX since that what she did in 76 but I want to hold off and get through the chemo. If no MX then I will have radiation.

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