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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Sep 24, 2010 04:47AM grneyd5600 wrote:

I originally found a lump in the right breast during a self exam.  I had a normal mammogram in Aug 09 - it showed notihing.  After the first bioposy that confimed invasive ca BS had more biposies and mrii done.  It confirmed I had IDC in right breast (20 tumors total) and 2 precancerous cysts in left.  No lymph nodes were thought to be involved.  BS recommendation was a mastectory on right and lumpectomy on left.  I made the decision to do bi-lat max.  Went into surgery still believing no lymph nodes although I told my mother and husband morning of surgery "do not be overwhelmed when they find this is my lymph nodes, I am prepared for that so you need to be".  It was - 4 of 22 were malignant.  Sentinal node didn't work so the BS actually found the first two by feeling around.  No nodes were check in my collar or left side.  I was referred for chemo and I have 6 Taxol tx left.  I saw BS this week and he told me I didn't need rad if I didn't want it.  I quickly advised him I did!  I had one tumor that although we got clear margins it was only .5mm from the chest wall.  Too close for my comfort.  I have a rad consult next week and if ithe rad onc isn't willing to do rads I will find one who will.  What does concern me is I keep being told - "we don't do scans or CA-15 (tumor market) tests because they aren't reliable".  Give me a break!  Frankly sitting around waiting for a syptom to show up that my ca reoccurred is down right frightening.  I may have to push some buttons on the scans and other stuff before its all done. 

Anyway, my main point ladies - be your own health advocate.  Ask questions, bring article along with you to your ca team and make sure they are answering you.  My BS told me I only had 3 lymph nodes involved the other day - I pulled out my final path report and handed it to him right there in the examing room - he then said "oh you might need radiation". 

Hang in there ladies!  We will get through this journey one step at a time.  Sending hugs to all.

Jackie Dx 3/26/2010, IDC, 2cm, Stage IIIA, Grade 1, 4/22 nodes, ER+/PR+, HER2-
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Sep 24, 2010 08:02AM crazylifex3 wrote:

With having prior expierience, NO you are NOT misunderstanding anything! I had a bi-lateral mx in 2004 for IDC, and I just found out yesterday that it is back! Not only where it originally started, but also it has mets to my spine and knees. I am only 38 years old. I would be the first to be honest with you and to tell you to please make sure that you check the skin of the mx site often. I had three small bumps that itched in the mx scar and they were positive for a recurrance. This is a tough road to go down, but you have all the support that you need here. Best of luck to you!

Bernadette

Surgery 4/13/2004 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 5/2004, IDC, 3cm, Stage IIIB, Grade 2, 0/2 nodes, ER+/PR+ Chemotherapy 5/3/2004 AC Hormonal Therapy 6/5/2004 Surgery 7/3/2004 Reconstruction (left); Reconstruction (right) Surgery 8/15/2004 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/8/2004 Reconstruction (left); Reconstruction (right) Surgery 2/4/2006 Reconstruction (right) Surgery 3/28/2008 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 8/2010, IDC, 3cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/7/2010 Hormonal Therapy 11/1/2010 Arimidex (anastrozole) Radiation Therapy 12/15/2010 Bone Chemotherapy 3/13/2011 Xeloda (capecitabine) Radiation Therapy 6/6/2011 Bone Hormonal Therapy 1/13/2012 Aromasin (exemestane) Dx 3/2012, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Surgery 4/2/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/11/2012 Bone Radiation Therapy 8/15/2013 Bone Chemotherapy 1/26/2014 Taxol (paclitaxel) Radiation Therapy 6/20/2014 Bone Hormonal Therapy 7/30/2014 Faslodex (fulvestrant) Dx 8/2014, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Chemotherapy 9/24/2014 Halaven (eribulin)
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Sep 24, 2010 08:07AM crazylifex3 wrote:

Pamelajo, I hope all is well with you as I have not seen you on here in a while. I think of you often and you are in my prayers as well. The pathology came back and unfortunately my cancer is back and it has mets to my spine and knees. I am sooo friggen bummed. However, I am happy to report that my receptors have stayed the same. I do have a question for everyone and that is how are you able to write at the bootom of the screen and put multiple diagnosis on your stats?? Please get back to me pamelajo soon!

Bernadette

Surgery 4/13/2004 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 5/2004, IDC, 3cm, Stage IIIB, Grade 2, 0/2 nodes, ER+/PR+ Chemotherapy 5/3/2004 AC Hormonal Therapy 6/5/2004 Surgery 7/3/2004 Reconstruction (left); Reconstruction (right) Surgery 8/15/2004 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/8/2004 Reconstruction (left); Reconstruction (right) Surgery 2/4/2006 Reconstruction (right) Surgery 3/28/2008 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 8/2010, IDC, 3cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/7/2010 Hormonal Therapy 11/1/2010 Arimidex (anastrozole) Radiation Therapy 12/15/2010 Bone Chemotherapy 3/13/2011 Xeloda (capecitabine) Radiation Therapy 6/6/2011 Bone Hormonal Therapy 1/13/2012 Aromasin (exemestane) Dx 3/2012, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Surgery 4/2/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/11/2012 Bone Radiation Therapy 8/15/2013 Bone Chemotherapy 1/26/2014 Taxol (paclitaxel) Radiation Therapy 6/20/2014 Bone Hormonal Therapy 7/30/2014 Faslodex (fulvestrant) Dx 8/2014, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Chemotherapy 9/24/2014 Halaven (eribulin)
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Sep 24, 2010 08:18AM tobyj wrote:

18 months after BMX, new lump(s) on bc breast.  mri wasn't helpful, but showed liver mass (normal).  lumps not concerning anyone, but now concerning me in the middle of the night.  I have a bad feeling and think I want them removed and tested.  I don't feel healthy and I'm concerned.  Any advice?  God bless you all.

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Oct 1, 2010 07:56AM Shirlrae wrote:

Marcilene, I had the exact same thing as you and had bilateral Nov.13. Started with Arimidex,but now on Tamoxefin because I couldn't tolerate the bone pain. My oncologist says there is no cut and dried figures on recurrence. The odds are on your side,there will be none. I work on not thinking about it and I am grateful it was found early. I did not have reconstruction. Hope you are doing well.  Shirl
shirley
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Oct 1, 2010 11:15AM kellyj wrote:

Tobyj,

I had a lump on my BC side 2 yrs after BMX.  It was cancer, they were shocked. 

Dx 10/22/2009, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Oct 9, 2010 12:03PM slmdavidson wrote:

LilyLou - I'm still here!  Had been off the boards for a while, now back on with issues on hormone therapy.  After my lumpectomy in Jan 09, I did 6 weeks of radiation to my fake boob (!) and started on Lupron to shut off the ovaries and tamoxifen.  After 9 months on Lupron and tolerating the post-menopausal state, had my ovaries removed.  There IS a difference between chemically induced menopause and the real deal.  At any rate, I am doing fine, getting ready to switch to Armidex - will be interesting to see what side effects go away and what is new. 

MarciIlene - I think the percentages that I've read recently were in the single digits regarding recurrences after BMX.  Try not to freak out, there are LOTS of ladies that had breast cancer YEARS ago and have never had a recurrence.  We had a 50 year survivor in our Race for the Cure this year.

crazylifex3 - I am so sorry to hear about your recurrence and mets.  That just really SUCKS!  CANCER SUCKS!!  Know that I'm thinking about you and praying - let us know how you are doing. 

tobyj - did you get any testing done yet on those lumps?  If it's keeping you up at night you should go talk to your breast surgeon.  Mine did a biopsy in his office, couldn't really get at it with a needle but ended up just opening up the skin and plucking that little thing out.  He didn't think it was cancer either....but it was.  Let us know.

(((((HUGS))))))  Laura

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Oct 13, 2010 07:08AM Fighter_34 wrote:

Lisa: 

I am doing the samething. I was told it was isolated but hey isn't that what they tell most Stage 0 and 1 cancer patients. And then something happens.

Dx 8/30/2010, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Oct 13, 2010 02:48PM beckward wrote:

tobyj, had my lump (in bc breast) biopsied yesterday.  Was a tricky situation with the lump right up next to the implant.  Radiologist was rockin' fabulous...I watched the whole US guided needle bio. on the screen.  She had nerves of steel, and I finally had a good night's sleep...because now I'LL KNOW, good or bad.  My advice, ignore the bs who says it's probably nothing.  It's not in THEIR breast!  

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Oct 15, 2010 06:08AM beckward wrote:

Got the biopsy results...it was blood clot!!  No one knows why it was there...but haven't heard of that happening before...must have been some irritation/bleeding from the implant.   Such relief.  Just another lesson for us all.  

I hope someone reading this down the road gains insight from my experience.  Beth 

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