Wish things were moving faster.

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kirismum
kirismum Member Posts: 86
edited June 2014 in HER2+ (Positive) Breast Cancer

Cry

 It's now been a month since Kirir discovered her lump, and over three weeks since the diagnosis came back - 3 cm, ER+ PR- HER2+. Since then she's met her bs and onco, had her SNL nodes out (last Friday), had an additional needle core biopsy for the research program (2 days ago) and is on IVF treatment to harvest her eggs (Sunday will be Day 7; they expect it to last 10 - 12 days). She is scheduled to start her chemo on either Nov. 15 or 18. 

In the meantime her tumor seems to be growing and the skin above it has started to look weird. This terrifies me. She is at Dana-Farber and I know she's in good hands, but the delay seems dangerous to me. I'm worried about the tumor metastasizing. We won't know the results of her SNL biopsy till sometime next week, and I'm scared about that too.

Thank God she doesn't share my anxiety. Is this normal, for treatment to take so long to get started? (The extra delay because of the IVF treatments didn't seem to worry her oncologist.)

 Sigh. Cry 

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  • mmm5
    mmm5 Member Posts: 1,470
    edited November 2010

    Kris Mum

    Be the squeaky wheel, we have to be our own advocates, I don't mean to scare you but Her 2 tumors grow quickly. I was dxed in April and had a mast in May (3 weeks time) I was fine but my tumor was under 2cm.

    Why can't they start the chemo on next week, it should not interfere with the harvesting at all, many take this chemo while pregnant.

    It will most likely be ok, but I have consulted with several ONCS and they all say Her2 treatment should begin within 4-5 weeks after dx, especially if scans are clear and nothing has spread yet because it can grow so quickly. As soon as you know about the pathology and if nodes are involved ....the sooner the better.

    You can go to cancer math and type in the size of tumor and type and it will tell you the odds of having positive nodes. That being said clear nodes are not an absolute safety net, approximately 2 -3 percent of clear nodes at time of DX already have a mets situation through spread through the vascular system.

    AGAIN Kris MOM this is all a worst case scenario, many of the young gals that have gotten this dxed in time are fine and can wait the 5 weeks to start treatment, but the small percentage that are not ok count too.

    Good Luck and confront the Doctors on any issue you are uncomfortable with. 

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

    Sorry mom, it's tough when you're worried about you kirir.  It sounds like your dd is in hands that are moving fairly quickly.  When you say the tumor looks like it's growing and the skin looks weird, I'm assuming you're talking about where they did biopsy.  Often the excisional biopsies will have some scar tissue develop as they heal and look very weird.  I hope that is the case. 

    hugs

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  • AnnieFletch
    AnnieFletch Member Posts: 11
    edited November 2010

    I was diagnosed Aug '07 with a 3 cm, triple positive tumor, found by a mammogram.  I was able to get a biopsy done the same day as my mammo, & had results in 2 days.  My lumpectomy was done 10 days after my biopsy, & chemo started 2 weeks after the biop.  The tumor was very aggressive (grade 3 & 9 on the Bloom/Richardson scale), so it had increased about 1 cm in size between finding it & the lumpectomy.   I had 4 months chemo (TC) & 1 yr Herceptin.  I chose to have bi-lateral mastectomy following chemo w/ no reconstruction rather than radiation (following surgery, the "healthy" breast showed precancer cells).  Since I'm post-menopausal, I'm on Femara for 5 yrs.  I have labs done every 3 months & I've been blessed that everything is normal!  It's hard to be patient during the "journey", but at the same time don't be afraid to speak up if you are concerned about something.   You are hiring the doctors & they work for you! 

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  • kirismum
    kirismum Member Posts: 86
    edited November 2010

    They got her eggs out today (24!!) and are starting the chemo tomorrow, a week early. I'm so relieved and she is eager to get things underway.Smile

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

    (((((((((Kiri's mom)))))))))

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2010

    Just to let you know, I had the same skin changes.  I was dx'd August 17, 2009 and I had my mastectomy October 20, 2009.  I started chemo December 2nd 2009.  I finish herceptin December 1 2010.

    I ended up having three areas of invasive cancer - the largest was 3.4 cms.  I also had 4 cms of associated DCIS, extending into the lobules.  Grade 3, ER+ PR- HER2+

    I was node negative.

    Bone scans and CTs come up clean.  

    It isn't a medical emergency to get treatment right away.  Nobody should delay longer than necessary but if things need to be done, they need to be done first. 

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