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 19, 2009 12:21PM nichola wrote:

Hi Laura

I too was stage 1 grade 1, no rads or chemo and I declined tamox. I too have had a recurrence, mine in the skin of my skin sparing mascectomy with immediate LD flap reconstruction and had to have it removed.  It was such a shock and from what I could nake out there was a less than 1% chance of ths happening.

I had 3 x satellite skin nodules?  Was yours in the skin? 

Sending you love and cyber hugs as I truly know how you're feeling...

Nikki

Original DX Stage 1, Grade 1 multifocal IDC 2004. Multiple nodule recurrence in skin of reconstruction, Nov 2007 and reconstruction removed. DIEP/tram replacement reconstruction Dec 2008. May 2010 DX chest wall recurrence.
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Jan 19, 2009 02:44PM SuzCA wrote:

Lots of 1% 'rs here.  I had a bilat skin sparing mast in April 05 for stage 2, big tumor, no nodes, so no radiation.I had 8 rounds of chemo. In June of 08 after many surgeries on the left breast due to healing problems I had all the remaining tissue removed during a tram flap on that side.  They found some dcis and a small amount of idc.  Evidently the remaining cells were dcis at the time so they did not respond to chemo.  But I had some high grade cells too and those evolved into idc.  My Onc says I owe my guardian angel a big Thank You.  Fortunately the margins we wide and the nodes that were scooped out with the rest of the tissue were negative so no further tx was recommend.  Quite a surprise though.   

DX 4/2005 Stage II?(vascualr invasion) IDC, DCIS, LCIS, weak ER+, PR-, HER2-, IDC, DCIS loc reocc, IDC 8/2008 Dx 4/8/2005, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR-, HER2-
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Jan 20, 2009 08:49PM slmdavidson wrote:

Hi SuzCA and Nikki,

Too many 1%'s here!!!  I see a lot of "skin sparing" too.  I wonder since that is relatively new, if they will find out that it's not such a great idea?  I just got my lumpectomy path report back yesterday and didn't get clear margins, so back in I go on Tues.  Looks like radiation and tamoxifen for me this time (didn't do either last time).  Am seeing an Oncologist in the next few weeks and the oncotype DX test is in process.  I'm hoping to still get away without chemo, but if it's recommended, of course, I will do it. 

I didn't have any "satellite skin nodules"... not sure what that is?  Mine was ~ 1 cm total (so far) just under the skin so not considered on the muscle.  The did extra scraping of the skin that remained, all around where the lumpectomy was and no native breast cells at all were identified so it certainly defies logic.  I think it's important for the mastectomy ladies to know to be watchful.  Plus, I was told I didn't need any more mammograms - not sure I believe that either. 

Beat of luck to you both.  I think we all got lucky here!  Laura

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Jan 21, 2009 07:33AM mykidsmom wrote:

Ok ladies - You have me convinced that there is still a real risk out there. What kind of monitoring did your MD's suggest for post-bilateral mastectomy? And how frequently? Thanks. - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Jan 21, 2009 07:59AM nichola wrote:

Hi Girls

I come from a medical family and as such just had to find out as much as poss on this subject.  I found a couple of clinical trials using the histories of several thousand women and compared skin sparing mascectomy and straight mascectomy recurrence:  The outcome of these trials seemed to prove that skin sparing presented no more risk.  We are just plain unlucky!

Laura - am I right that your recurrence is under the skin, but not involving the skin..?  I do hope so as that is better for you.   Skin "mets" presents in different ways, anything from a rash to individual "satellite" nodules as I have. 

If you no longer have breasts/ breast tissue they won't do mammos... Ultrasound of reconstruction/ mascectomy scar and armpits is certainly done periodically here in the UK.

Nikki

Original DX Stage 1, Grade 1 multifocal IDC 2004. Multiple nodule recurrence in skin of reconstruction, Nov 2007 and reconstruction removed. DIEP/tram replacement reconstruction Dec 2008. May 2010 DX chest wall recurrence.
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Jan 21, 2009 08:00AM mittmott wrote:

I had a lump( a few months) on my scar line after my mx, had it removed and it was only fat necrosis.  I had my mx a little over a year ago. I have another small lump, but it looks like a stitch mark from what I can make out.  I've had it a few months, I'm seeing doc next week, and will show her.  I hope I don't have to do another biopsy. She told me they always have to be done surgically because of the implants. By the way, I had lat flap and implant on cancer side, just implant on non cancer side. lat flap side looks better.  My only follow ups are with b. surgeon. I found an outside onc to follow me once a year. The onc. I had at msk sent me off, I had no chemo, or rads with this cancer, and no tam., as it doesn't work on me. This was my second cancer, I got my first one after being on tam. for a year, so they feel it's not right for me.

Dx 9/2000, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER+/PR+, HER2- Surgery 9/9/2000 Lumpectomy; Lumpectomy (Left) Dx 9/2006, IDC, <1cm, Stage I, Grade 3 Surgery 9/2/2006 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Latissimus dorsi flap, Tissue Expander; Reconstruction (Right): Latissimus dorsi flap, Tissue Expander
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Jan 21, 2009 09:04PM slmdavidson wrote:

Nikki and Jean

You are correct, my recurrence was under the skin, not within it, so I was lucky.  Regarding the continued follow up, I had NONE.  My breast surgeon said I didn't need to do mammograms anymore.  I'm not really sure though if it would have been picked up.  There was a really small lump which was "plucked" out via the biopsy.  The path report showed much more cancer, but it wasn't seen on the mammogram or MRI I just had.  The mammo tech noticed it had been 16 months since my last one and she wondered why I hadn't had one.  I told her what my doctor said and she said they do them all the time on reconstructions so I guess there is a difference this practice.  Once I get through all of this (surgery again Tue since margins weren't clear) I'll make sure I ask about any additional follow up. 

 Laura

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Jan 22, 2009 01:29PM healthteach wrote:

Hi.  I too had a double mastectomy, reconstruction followed by chemotherapy and tamaxofen.  Two years later mine came back in a lymph node. I was feeling a lump in my armpit an no one thought it was anything but it was a cancerous lymph node (mine was in 1 out of 20 the first time)> It was frustrating becasue I too thought I did the most aggressive things but sometimes cancer is more aggressive than anything we do.  This time around I removed the node and whatever nodes that were left (about 5) and had radiation of the whole area, had my ovaries removed and now am on femera.  Frustrating being 39, working with three little ones but doing the best I can. I feel good...exercise and do what my doctors tell me to do! It does seem like there are a lot of us in the less than 1% group!  Be well-healthteach

Stacey
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Jan 22, 2009 05:33PM slmdavidson wrote:

Wow Healthteach!  That is so unfair - and you are so young and to have to go through ALL of that!  You absolutely did everything the first time to keep this from happening.  Life just isn't fair.  You seem like you are really handling everything so well.  God only gives us what we can handle and you must be a very strong woman.  I'm sending prayers your way right now!  You are an inspiration.  Take care!

 Laura

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Jan 23, 2009 11:46AM healthteach wrote:

right back at ya on the prayers...Let me know your next course of action, may be I can help. 

Stacey

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