Tripple positive

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jpmercy
jpmercy Member Posts: 189
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi everyone

just wondering how you have decided to treat your tripple positive BC. I am 30 years old, family history although BRCA negative, started out with DCIS 2.8 cm had BMX nodes negative but mulitfocil microinvations and a 2mm IDC. all was grade 3 HER2 3+++. After much debate and meeting with several onc and doing research and the fact that i have a 10 month old baby. i decided to do 12 weeks of weekly taxol and herceptin and then herceptin for a year. i am on week 7 of the taxol and besides some stomach cramps i have had no major side effects and am using the penguin cold caps and have lost no hair...so needless to say i am tolerating all of this very well. my question is once done with chemo should i take tamoxifen? my onc said it would lower my recurance rate only 2% but could take it if i wanted to. im very much on the fence for the following reasons:

1. my er/pr was positive 40%

2. i had a BMX with clean and clear margins so my chance of local recurance is very low

3. i feel the herceptin and the taxol has done alot and will continue to for the next year

4. i have a family history, paternal grandmother who had uterine cancer

5, i want to have another child and firmly believe that i will not let BC take that from me. life has risks i know and BC is only one of the risk that life has but there are so many other risks and we dont stop living because of them...so i plan to start trying for a second child 6 months after stopping herceptin which my onc is comfortable with this plan pending the taxol does not do anything to my ability to conceive...have maintained my periods so far...i could however take the tamaxifen from January 5th- and continue until im done with herceptin in Oct them stop for 6 month to cleanse my boday try to get pregnant an then go back on tamaxifen after

6. have read alot stating that tamaxifen does not necessarily help people that are HER2+ and i was stronly HER2+

sorry so long but your thoughts and experiences and opinions would be greatly appreciated!!

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Comments

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited November 2010

    Jennifer,

    The tamoxifen is used to treat hormone receptive breast cancers. As far as I know it has nothing to do with the HER2 status - that's what the herceptin is for. So it's the ER and PR reading that's important.

    Sue

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  • flash
    flash Member Posts: 1,685
    edited November 2010

    Herceptin if for the Her2 receptors, tamoxofin is for the growth from er+, pr+ Two different things.  It's up to you on the tamoxofin.  I would definitely listen to your onc or get a second opinion from another doc if you're not sure.  good luck

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  • jpmercy
    jpmercy Member Posts: 189
    edited November 2010

    Thanks for responding. i feel as though i am confident with the path i too for the HER2+ but im just unsure if i should do the tamoxifen. i was 40% Er/pr and did have a BMX so my local recurrance is low just wanted to know about distant recurance and if tamoxifin will make a difference my onc says it will not make much of a differnece but i could take it if i wanted...but if thats the case are the side effects worth it? i guess that is what im wondering!

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  • jpmercy
    jpmercy Member Posts: 189
    edited November 2010

    do either of you plan to take it after your treatment? i see one of you had BMX

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  • tapril
    tapril Member Posts: 6
    edited November 2010

    I was 34 when dx and had the maximum treatment i could possibly get. Chemo,Herceptin,radiation,and tamoxifen. I understand your reluctance to go through chemo but speaking from the other side of it,you do get through it. It's not easy but possible. I have children and wanted to be able to say to them that i tried everything i could to be with them for as long as i possibly can.

     Tamoxifen is for the treatment of your hormone positive breast cancer. Herceptin is for your her2+ status. So although you are correct that Tamoxifen doesn't provide much help to those of us that are her2+ It is certainly providing benefit to your hormone status.

    Always do what is right for you but make sure all your decisions are as informed as possible.

    All the best. 

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  • tapril
    tapril Member Posts: 6
    edited November 2010

    Just read your most recent post...My onc said that there was a higher chance of recurrence to other places in the body than in having a local recurrence. Based on that i decided not to have a masectomy until i have completed my 5 years on tamox,and feel like i am in the clear. 

    Hope this helps 

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited November 2010

    Jennifer - mine was very highly hormone receptive 90 and 95% - probably caused by HRT. I am taking Arimidex as I am post menopausal. I'm glad you are doing the chemo. The hercpetin is probably the most important thing here. It is probably wise for you to take tamoxifen but that is your choice and you should rely on your doctor's advice.

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  • LouLou40
    LouLou40 Member Posts: 180
    edited November 2010

    My Onc said Herceptin and Chemo was the key to my triple pos BC as well, he thought Tamoxifen would only reduce the risk of recurrence by a further 2% - my er+, pr+ were lower than yours.

    Chemo sent me into menopause so my Estrogen blood level is low.  I have decided the SE's out weighed the benefit of Tamoxifen for me, if my period returns then I may consider taking the Tamoxifen, my Onc supported my decision.

     www.her2support.org has discussions about this topic

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    Interesting. My onc gave me these statistics for my specific case:

    Increase stats of being alive and NED in 10 years:

    + no additional therapy after surgery = 40%
    + hormonal therapy only = 26% *
    + chemotherapy only = 28%*
    + combined chemo & hormone = 44%*

    (additonal to the 40%. This means if I do combined therapy my stats are
    44% + 40% = 84% alive and NED in 10 years. Also note that 2% of women die of other causes.) 

    I am only 30% ER+ and 5% PR+

    `````````````````````````````````````````````````````

    But that might be because I'm taking arimidex. I went into chemopause as soons as I started chemo. (I'm 1/2 way through and still haven't had a period but do have some slight hot flashes at night). My onc said at my age 49 almost 50 it isn't coming back.

    I have also read that Tamoxifen is sometimes not matabilized well by us triple postive gals. They think it might be because we are not usually highy ER/PR postitive. I think this is something you need to discuss with your onc if you do decide on hormone therapy.

    There are drugs to surpess your ovaries that would allow you to take an aromatase inhibitor like Arimidex. It may be more effective although then you need to worry about bone loss. Where you are so young this might be more of an issue. In my case I already have osteopenia. My onc is also going to put me on Zometa (prevent bone loss) when I start Arimidex. Zometa is it has shown to reduce the chance of bone mets by 36% (relative) 3.2% (absolute) in premenopausal women (if I understand the article correclty). Here is the link to the aricle my onc printed out for me on that: 

    http://www.nejm.org/doi/full/10.1056/NEJMoa0806285 

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited November 2010

    HI JP,

    I had a bilat mast (one side was done phrophylactically) the cancer side had clean margins.  But, I had a bigger tumor and one lymph node involved.  So, I also had radiation and I am taking tamoxifen.  At dx, i had a 2 yr old and a 3 yr old.  I wanted to fight this cancer with everything.

    V

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  • dimidani
    dimidani Member Posts: 45
    edited November 2010

    Hi,

     I just had a bil MX ,phrophylactically on the left side on Nov 15th. Had imediate recon. with a tissue expander on the afected side and permanent implant on the healthy breast. I am very happy with my decision as I had very dense breasts. Post surgery I was fine. Not in to much pain just some increased discomfort across the chest area. I was able to stand walk pick up objects from the floor, make a cup of tea. I even drove after 1 week. The drains are in the way but not anoying at all.

     I was DX in April, had neoadjuvant chemo. My tumor was 1.6 cm with 2 positive nodes and I am strongly Er over 90%, Pr over 50% and HER 2 +. I was told that I would be on Tamoxifen after I finish radiations. I also read that tamoxifen in premenopausal population does not metabolize well if we have the HER 2 status. I asked my doctor about that and she said that was a old article and there is not enough evidence out there to show that Tamox. does not work well in HER 2 status.I trust my oncologist very much.

    I would like to share with you the news of my path report that I just got yesterday. FULL PATHOLOGICAL RESPONSE. THERE WAS NO TUMOR LEFT AND THE 2 NODES ARE FREE OF CANCER.  So chemo worked well.

    Daniela

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  • lago
    lago Member Posts: 17,186
    edited November 2010

    Daniela That's an awesome path report.

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  • jpmercy
    jpmercy Member Posts: 189
    edited November 2010

    thanks Daniela and Congrats on the path!!! good luck to you~ :)

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  • LouLou40
    LouLou40 Member Posts: 180
    edited November 2010

    Hi lago,

    My Onc put me onto Arimidex for hormone therapy as he thought an AI twas more effective than Tamox for Her2.

    I had to stop after 1 yr due to my DEXA scan showing my BMD had dropped a further 10% into the osteoporosis range, I was in the osteopenia range prior to starting. I am on Zometa already, so hoping to be able to reverse the effects with diet and exercise as well.

    Daniela, that was a great result from the Chemo. 

    T 

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