Topic: Recurrence after bilat mastectomy?

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Jan 17, 2009 05:17PM

Posted on: Jan 17, 2009 05:17PM

slmdavidson wrote:

I've just had a recurrence after a bilat mastectomy 15 months ago.  Just wondering if anyone else has had this??  I thought I was done with breast cancer after removing both breasts!  I did not have rads, chemo or tamoxifen last time.  Just had my "lumpectomy" and 5 LN taken out this week, and still waiting on the pathology report.  Looks like probably radiation this time and tamoxifen but not sure yet about chemo.  Will know more at my follow up appt this week.  I guess it was good I found it early - it was right there under the skin.  Seems like I read 1% recurrence rate after mastectomy but that seems high to me since I haven't read much about it.  Anyone else have this?  Thanks, Laura

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Jan 17, 2009 06:10PM samiam40A wrote:

First of all, I am so sorry you have to go through this again.  I have also heard the 1% recurrence figure due to some breast cells being left behind. 

 I am in the planning stage of my bilat mx and hearing this scares the heck out of me.  However, chemo and tamox are being recommended for me.  Just curious--did your doctor offer you those options? 

In any case, I will be thinking of you and sending good vibes your way.  Hang in there and I know you will get great support from the ladies on this board. 

-Samiam

IDC diagnosed 1/12/09, 1.6 cm, ER+/PR+/HER-, MIB-1 15%, bilat mx w/TEs scheduled for 2/3/09; awaiting BRCA results
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Jan 17, 2009 06:40PM Mykidsmom wrote:

Laura - That is totally unfair! After all you went through and now this. I am so very sorry. I know they talk about a 1-3% risk due to a few breast cancer cells remaining, but boy oh boy - it doesn't seem real. As you said, at least they caught it early. Best wishes and hugs!!! - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Jan 18, 2009 09:00AM slmdavidson wrote:

Samiam - thanks for your reply.  Since my initial diagnosis in 2007 was stage 0, multifocal DCIS, my surgeon did not refer me to any other oncologist or radiatiologist.  Since my 1 node was negative at the time of the mastectomy, he said no further treatment was needed and nothing further was offered, not even a suggestion for a consultation.  In retrospect, I'm thinking Tamoxifene should have been a no-brainer.  But I didn't know - didn't push - was happy to have gotten away "easy", though the bilat mastectomy and latisimus flap was pretty brutal (but great cosmetic results).  I wish I had found this website back then.  I would have been much more educated!  If you need to talk w/anyone about the mastectomy/reconstruction let me know!

 Laura

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Jan 18, 2009 09:41AM Lisa1964 wrote:

Laura, I am so sorry you are going thru this again.  However, I must thank you for posting this.  you have validated my decisions and course of treatment.  My idiot BS initially told me DCIS, lump, rads - with no discussion or other options offered.  I was not comfortable with so little info so I had several conversations with the PA - God Bless her!  I then decided on the bi-lateral mx.  During the surgery IDC was discovered hidden under the DCIS and I had 2 positive nodes.  Tomorrow I have my 5th out of 6 chemo tx's.  I have considered chemo my "insurance policy" and your experience validates that.  I will have 1 year of Herceptin and 5 years of tamoxifene in addition to the chemo.

Good luck to you.  This is a great place for info and support.

Lisa

I attacked and I won! www.JohnnyRebelAcres.com Dx 8/28/2008, IDC, <1cm, Stage IIA, Grade 1, 2/17 nodes, ER+/PR+, HER2+
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Jan 18, 2009 03:30PM slmdavidson wrote:

Hi Lisa.  You are a great example.  Too many times, I've read things here that indicate some physicians aren't willing to be aggressive and it's the patient that ultimately pays the price.  What a shock for you to find the IDC during your surgery?  Wow.  Obviously this validated your decision.  You would think that would be insurance enough. One big lesson I just learned -  pay attention to your body.  Just because you've had a mx doesn't guarantee you are done with this beast....I found the lump, found it early, and didn't wait long to get it biopsied.  I'm glad I was paying attention!  All my best to you!!! Smile

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Jan 18, 2009 03:44PM jules3 wrote:

Wow Laura...that s a mind bender for sure!  Had you done reconstruction too???  I m so thnkful you found it too...Yes, these boards have been a true God-send and I have avoided many mistakes becuz of the angels on here...ex: I found out about the test for metabolization of tamoxifen and had it done~~it s very rare (only 6%of women do not metabolize) and I just happend to be one!  My onc. had never suggested it ...she also "forgot" that prozac doesnt work with tamox...I learned that one too from the gals on the boards.  BTW I also got my NEW onc. referral from someone on here~~I love him and he makes me feel confident~~so important becuz he and I are partners for life!!

I say a prayer for good results on your tests~~be sure to let us know what happens becuz we really do care....

Love Jules

my puppy looks everywhere for the Cure! he's convinced its near the neighbor's shitzu, Daisy! Dx 9/5/2008, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 18, 2009 03:47PM Estepp wrote:

So Lisa, no radiation? I am having to make that choice right now.

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Jan 18, 2009 03:48PM Estepp wrote:

Laura, thank God you found it early!

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Jan 18, 2009 09:09PM slmdavidson wrote:

Jules - thanks for your reply.  I did do the latisimus flap reconstruction at the time of the mastectomy (Oct 07).  Pretty brual recovery but overall great cosmetic results.  I was 41 at the initial diagnosis and figured I could handle it.  Had the tissue expanders then switched them out for implants in Feb 08.  Thanks for the info on the tamoxifen.  I had no idea about the metabolism issue.  Good to know - were you having side effects that you noticed or how did that all come about?   Love your puppy comment and photo - adorable!  Is it a poodle or bichon?  P.S. Our cancer stats are pretty similar.  Would love to hear your treatment plan.  I should be hearing some info this week as to my next steps. 

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Jan 18, 2009 10:27PM Lisa1964 wrote:

I was not aware of a metabolism issue with tamoxifen.  What is the test????

Esteep, just looked your dx.  Grade 3  and tumor size may be why your rad doc is suggesting the rads.  Who knows.  Another examply of why we have to be proactive in our care.

Lisa

I attacked and I won! www.JohnnyRebelAcres.com Dx 8/28/2008, IDC, <1cm, Stage IIA, Grade 1, 2/17 nodes, ER+/PR+, HER2+

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