Big decision - please help!

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TYE89
TYE89 Member Posts: 16
edited July 2017 in HER2+ (Positive) Breast Cancer

Hello ladies! This is my first post. I have been reading for a couple months. This forum is priceless!

Here's is my story:

-initial path report IDC 2.3cm Grade 1, ER 90%, PR 90%, Her2+ (FISH ratio 2.0), nodes look clear

-second path report at MDA Houston - notice Her2 - IDC 1.8cm Grade 1, ER/PR 90%, Her2- (FISH 1.81), nodes look clear

-dbl mastectomy by choice at MDA - I am 48, with wonderful DH & 3 children - I want to take no chances of Her2+ issues

-surgical path report - IDC 1.6cm, Grade 1 or 2 (discrepancy on report - values add up to 5, so still Grade 1, but says Grade 2. Waiting for response from pathologist), ER/PR 90%, HER2 + (FISH ratio 2.0), 1mm micromet in 1/5 sentinel nodes. -------- self contained, no LVI, very negative margins, 5 SENTINEL NODES REMOVED (4 were tiny, 1 normal size, all clear during surgery), the normal sized node ended up with a 1MM MICROMETS.

-I met with surgeon last week. MDA nomogram says 3% chance it is in other nodes, Sloan Kettering says 5%. OS doesn't expect RO to recommend radiation bc of my tumor size. I am left with the decision of watch nodes via US or go back in for ALND.

-Surgeon says lymph nodes & chemo are treated independent of one another.

-I meet with MO Monday & RO Tuesday.

-Before surgery, MO said if tumor stays under 2.0 cm, I would have 12 wks Taxol w/ Herceptin

-I have have BMI of 22, work out regularly doing spin & barre classes, eat pretty healthy & have slight CORDING from SLND. I am ready to do what's I have to do to rid my body and every cancer cell!

-Below are my questions/concerns. Any info/opinions/advice you girls could give is much appreciated!

1. WIll my chemo be changed due to the 1mm micromets?

2. If chemo doesn't change, will chemo (Taxol+Herceptin) be enough for the micromets or should I have ALND?

3. Should the low Her2 & grade 2 (was grade 1 on 2 biopsy results) have any affect on my decision to have ALND? I am worried I would experience more severe side effects. Although if that's what should be done I am ok in dealing with side effects.

4. It looks like I may have a possible decision to make on LNodes between wait & watch, ALND, or radiation to MX breast & I have no idea what to do!

I am having a difficult time finding anyone with a similar diagnosis!

Thank you so much girls! Your knowledge & sisterhood is invaluable

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Hi!

    1. The chemo recommendation is due to the fact that your cancer tested positive for an overexpression of the HER2 protein. Remember that your surgical pathology trumps the path reports from your biopsy.

    2. Why not radiate your nodes to clean up any stray cancer cells there? I had ALND and haven't had any problems. But, the more nodes removed, the higher the likelihood of lymphadema.

    3. Your HER2 level isn't that low or you would be HER2-.

    4. Again, radiation is less invasive than ALND. Are you worried about radiation interfering with reconstruction?

    There are plenty of women who are ER+/PR+/HER2+. We're on the triple positive board. Drop by some time!

    https://community.breastcancer.org/forum/80/topics/764183?page=1057#idx_31708

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  • TYE89
    TYE89 Member Posts: 16
    edited July 2017

    ElaineTherese - I'm sorry, I meant I am on the low end of Her2+ Iam thankful that I will get Herceptin.

    As far as rads - I really do t have an opinion. My surgeon just does not think RO will recommend. Rads wth reconstruction vs ALND --- both have possible side effects & issues. I just want to do what is best for me to get everything out of my body!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Ah, reconstruction. Well, yes, rads would make reconstruction more difficult, though not impossible. Re: ALND -- do you have a history of swelling? Women with a history of swelling may be predisposed to lymphadema. Also, women who are heavy are more likely to get lymphadema, but since you have a BMI of 22, that shouldn't be an issue for you.

    You've got a good list of questions for your MO and RO!

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  • TYE89
    TYE89 Member Posts: 16
    edited July 2017

    Swelling... to what extent? I know nothing about lymphedema. My hands swell sometimes if I jog or walk for long distance when it is very hot or they might swell slightly when I eat an unhealthy meal filled with sodium (which doesn't happen often).

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Swelling as in your body having an inflammatory response to other surgeries or medical conditions. I've heard some women with lymphadema note that their bodies have had inflammatory responses to other surgeries before they had their mastectomies/SNLB. For more on lymphadema, see

    http://www.breastcancer.org/treatment/surgery/lymph_node_removal/lymphedema

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  • TYE89
    TYE89 Member Posts: 16
    edited July 2017

    Got it! Thank you so much! I am having some slight cording for SLD. I am doing stretches. I'll take any side effects over BC, just trying to understand everything before I am faced with makinga decision.

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