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 02:17PM

Posted on: Jan 17, 2009 02:17PM

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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Feb 19, 2009 04:27AM mykidsmom wrote:

Ingrid - Well... that certainly stinks!!! THere seems to a be alot of ladies in teh 1% category!! Take care and enjoy those horses! - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Feb 20, 2009 08:44AM lollybeth wrote:

Laura, I want to make sure I understand because this strikes me where I live. When they did the path report after your mastectomies, did they find a microinvasion, or did your initial diagnosis remain DCIS stage 0? 

 By the way, I was told that recurrences usually occur within 2 years of initial diagnosis....  I am 18 months out....

Dx 7/7/2007, DCIS, 2cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+
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Feb 21, 2009 01:33PM kerry32 wrote:

Can I ask what it looked like?  Was it just a lump?  I had a bilateral a year ago and find doing a self exam to be so different - I sometimes feel I don't really know what i'm looking for.  I'm sorry you're going through this.

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Feb 24, 2009 07:01PM slmdavidson wrote:

Lollybeth - I honestly don't remember if I had microinvasion back when I had my mastectomy.  I'll have to dig that report out.  I do remember them saying they only found DCIS.  I did talk with an Oncologist last week.  He basically said there was no way to know whether my recurrence was a few cancer cells left behind or a possible metastasis to the skin.  I couldn't get the Oncotype score because the lump was so small (a good thing I know) but based on all the other info, he didn't feel chemo would be of much, if any benefit.  So, I am just doing rads now and will start tamox.  I will tell you that my Oncologist said having a recurrence after mastectomy is around 1% but that is also for IDC, not DCIS. He said he wouldn't see another "me" (DCIS then recurrence) for another 3 years or more!  The odds are crazy - why can't I get those when I play the lottery? Smile

Kerry - I just noticed a very small lump.  It was very close to the incision line and where the new areola was.  If it had been any closer, I would have assumed it was scar tissue.  It just felt like scar tissue really, just there was no scar directly on top.  I'd just suggest you know what it normally feels like - if you feel anything other than that - get it checked out.  My surgeon was floored.  Often times there will be a fatty necrosis that forms as a lump under the skin which is benign.  He was convinced that was what mine was.  Again, very rare and he's only had one other patient where she had DCIS and a recurrence.  So hopefully, non of you will have this either!

Laura

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Feb 24, 2009 07:38PM CAZ wrote:

Laura,

Thanks for the post, but I'm sorry you've been hit with this.  My PS said that self exams were the only follow up I'll need since my PBM and exchange surgeries.  She said that a lump should be palpable since the chest wall in now right under the skin.  I was never great at self exams before surgery, but your experience has encouraged me to try harder.  Best of luck and keep us posted.

Carol(AZ)

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Feb 25, 2009 04:37AM slmdavidson wrote:

Hi Carol

That information you just shared was reinforced last week to me by the Oncologist.  He still maintained that doing mammograms and MRI's is not an effective means of catching a recurrence and doesn't recommend them.  In fact, during my work up in January, no cancer showed on the mammo or MRI though I had two resections to get the cancer out this time.  These are more quickly realized by finding a lump just under the skin so keep doing those self exams!  Laughing

Take care!

Laura

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Feb 25, 2009 05:05AM mykidsmom wrote:

Well, if there is any good news, at least I should be able to feel the lumps now. Before my natural  breasts were just much too lumpy and bumpy normally to find anything. Thanks for the recommendation ladies, I had not heard that I should do breast self exams. Best wishes w/ your treatment. Now you need to really win the lottery, it's only fair! - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Mar 2, 2009 05:33PM kathy55 wrote:

Hi Ladies,

  I'm so happy to have found this forum.  I was diagnosed with DCIS multifocal in 1996-age 42.  Had bilateral mastectomies.  I was told radiation not necessary.  Nodes removed on both sides were neg.  2 years later found a lump under my arm, positive for invasive BC.  Had radiation and chemo.  2 months ago found another lump in the same area.  Its been 10 years!  Once again invasive BC.  My onco put me on Femara today.  I was surprised no chemo.  My tumors are ER+,PR+, and HER-.  I am still in shock, but should be relieved all my scans are neg.  I'm having a hard time staying positive.  I had chest x-rays every year, but I found both tumors during my self exams.  Are any of you taking Femara?   Thanks for your thoughts.  Kathy  

Dx 1/9/2009, IDC, 1cm, Grade 2, 0/10 nodes, ER+/PR+, HER2-
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Mar 3, 2009 05:43AM mykidsmom wrote:

Kathy - Wow. Does your BS tell you why you keep getting bc despite having done so much to remove the risk? I am not taking femara, but my friend is. She doesn't like it too well, but what can you do? It is interesting that both lumps are under your arm, were they obvious? Perhaps the silver lining is that you found the bc very early. Take care. I am sorry you are dealing w/ all this! - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Mar 3, 2009 05:54PM kathy55 wrote:

Hi Jean,

Thank you for your reply.  The only thing my Drs. say are that its very unusual, I must have  a very persistent cancer.  I was not able to tolerate Tomaxofin 10 yrs ago  After 8 rounds of chemo which induced menopause and 6 weeks of radiation I was wiped out.  Hopefully I'll do better with the Femara.  I am surprised about the no chemo decision.  I worry about that rogue cell hiding in waiting till you least expect it.  At least I cought things early.  Please, please do your self exams.  Kathy

Dx 1/9/2009, IDC, 1cm, Grade 2, 0/10 nodes, ER+/PR+, HER2-

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