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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Mar 6, 2009 04:57PM slmdavidson wrote:

Hi Kathy

Your post just gave me dejavu.  Not exactly the same, but I also had multifocal DCIS (age 41) and bilat mastectomies only to have IDC show up again 15 months later under the skin on my new foob.   No rads or tamox or anything after the first diagnosis and surgery.  Now I just finished my second week of Radiation and am expected to start tamoxifen after my rad treatment is finished.  HOWEVER, I just got a call today regarding the PET scan I had last week.  They found one hot lymph node in my chest, under my sternum (breast bone).  They are going to wait and take another CT after 6-8 weeks of Tamoxifen. The nurse said my kind of cancer (ER+) is better treated with tamoxifen rather than chemo. I was suprised to hear that.  I'm also surprised that they are just leaving it in there....it's all new as of today so haven't had time to investigate yet. 

I'm so glad you caught it early again and they aren't finding any active cancer anywhere else.  But geez, aren't you getting tired and pissed off about fighting this again.  That's how I'm feeling today!  Take care. 

Laura

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Mar 6, 2009 05:26PM - edited Mar 6, 2009 05:29PM by erica

Kathy and Laura,

Even though Tamoxifen and Femara (or other AI) aren't thought of this way, they are also a kind of chemotherapy (of the hormonal variety). Some studies have suggested that for ER+ post-menopausal women, aromatase inhibitors (AIs) like Femara may be more effective than chemo. I'm not aware of particular studies with Tamoxifen, but for pre-menopausal women, it's a very powerful drug that does reduce recurrence significantly.

Barbara

(I had a bilateral mastectomy after diagnosis of a second primary bc. The first bc was in my right breast, the second one discovered in my left breast three years later. I know how awful it is to go through this twice.)

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree
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Mar 6, 2009 07:38PM Mel-4 wrote:

Your post is really making me think.  I had a bilateral mastectomy on March 12, 2008 age 42. I had DCIS in my left breast and decided due to my family history to have the bilateral.  Because my lymph nodes on both sides were clear I had no chemo or radiation.  I felt good about all this but now I am starting to wonder about it.  I really thought I was safe since I had done the most I could do.  Did your doctor request the PET scan or was this done after a problem was found?

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Mar 6, 2009 09:35PM slmdavidson wrote:

Hi Mel-4

The PET Scan was done just as precautionary after my second diagnosis which was invasive ductal carcinoma.  I had a recurrence under the skin about 15 months after my mastectomy (for DCIS).  The Onc couldn't say if it was a metastasis to the skin or just a few cells left behind.  Both times I had lymph nodes out, they were clear.  They do say that most recurrences after mastectomies are found early since they are pretty obvious lumps right under the skin so my advice is to continue to do self exams.  My Onc also said it was VERY rare to have invasive disease after having only DCIS so you can take some comfort in that. 

Hope that helps. 

Take care, Laura

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Mar 8, 2009 11:28AM tos wrote:

1cathi,

Thank you so much for the information from Dr. Newman.  I had the honor of meeting her just a couple of weeks ago and she is amazing.  I could listen to her speak for hours.

I too was shocked at the high numbers she quoted re after mastectomy.

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Mar 11, 2009 09:03PM kathy55 wrote:

Hi Laura,

  Thanks for your response.  I haven't started the Femara yet (waiting on the ins).  I was wondering if you knew why some Drs rec CT scans and others rec PET scans.  You are right I am getting very tired of thinking that I'm going to be OK (10 yrs is a long time), only to have the rug pulled out from under me.  This forum has been a great help to me.  Some of the other ones have been down right disturbing.  A lot of negativity out there.  It's so hard to stay positive, but you can't ever give up.  I can't stress how important it is for every one to continue to  do your self exams.  I caught my reoccurances myself while they were very small.  We have to take care of ourselves!!  Kathy  

Dx 1/9/2009, IDC, 1cm, Grade 2, 0/10 nodes, ER+/PR+, HER2-
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Mar 12, 2009 08:05AM mykidsmom wrote:

Kathy - I am still at the TE stage, but will be getting my implants next month. As for self exams, I am so tight that I don't think anything could hide from me right now. But I will certainly do my BSEs after things calm down a bit. I also plan on going back to my oncologist and getting a follow-up plan. I am sending cyber hugs your way! take care. - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Mar 15, 2009 11:50AM nana2thegrls wrote:

Geez, I never thought I would be here again... Silly Silly me...I had bilateral in 2004 no recon until 3 years later... IDC left.. mutifocal right..sentinel node neg. 4 A/C's  followed by tamoxifin/aremidex .Opted for double tram flap (plenty of belly fat)... left side was a success.. right side failed after a 17 hour surgery.. So now I have a belly boob and an implant on the right. I have nercrosis/ scar tissue on my left breast where they attached the main vessels, but just recently I found a lump, just about where I had my initial tumor.. but closer to the surface then the first one.. I see the oncologist tomorrow (monday) .. I just have a sick feeling this is it again!!! I have been trying to think positive but it is hard the second time around... Iam going to insist they remove it with and excisional biopsy.. dont want to take any chances..

Nana Pam
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Mar 15, 2009 02:15PM mykidsmom wrote:

Nana - Oh my goodness, I am SO SORRY!!!!!!!!!!!!! I hope that it is nothing, especially w/ all that you have gone through. I will be sending warm and healthy soft hugs your way. Take care and please let us know how things go. Best wishes tomorrow!!!!!!!!!!!! - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Mar 17, 2009 12:55AM nana2thegrls wrote:

I have an ultra sound and biopsy tomorrow morning... They think it might be a lymph node. I will know the results next Monday.. Need Prayers!!!!

Nana Pam

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