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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Aug 13, 2010 01:04PM o2bhealthy wrote:

LilyLou - I am so glad you posted your questions. 

I had my last Herceptin in July and am meeting with my onc on the 18th of August. 

I have worked myself into a tizzy over this appointment because in the past when I asked 'How do I know when I am NED?'  I was told, 'You were NED after your BMX'. 

REALLLLY???!!!!  Then why did I just go through chemo hell and a year of Herceptin??? 

When I asked about 'What is next? Scan's? ect..." I was told "We only do scans if you are symptomatic."  I was not symptomatic with my first dx!!!!  

I am supposed to meet with my onc every 3/6 months for the next 3 years with alternating mammo/MRI each year.  Mammo??? I had a BMX, all the mammo will show is skin and implant!  What about chest wall?  What about Lymphnodes? 

I don't know how to push for scan's and better follow up care because I don't know how to ask or what to ask.  I don't have an advocate who can help me and since I live in such a rural area I am worried about pissing off the only onc in the area.  I have always been so taken aback by the 'because I say so' attitude that I really haven't responded well when I get these 'pat' answers and am now at a loss on how to proceed and stand my ground.  All I know is I NEED to know that, right now at this moment in time, I am NED or not...I cannot move forward with this constant worry and doubt in the back of my mind.

Any suggestions???

Michelle ~ DCIS and IDC - Thyroid Cancer dx 10-27-10, partial thyroidectomy 11-23-10 Dx 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+ Surgery 6/23/2009 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/19/2009 Herceptin (trastuzumab) Chemotherapy 7/19/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/12/2009 Reconstruction (left); Reconstruction (right) Hormonal Therapy 12/1/2009
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Aug 13, 2010 04:07PM hd1017 wrote:

ivorymom, 

I can think of one perfect thing. Love. It's what gets me up each day to travel through this imperfect world!  But I know you meant tamox, and I know there's no sure thing. Just got me wondering if I should have been treated more aggressively first go around. Not that a bimx isn't aggressive. 

Interesting that your cancers were both ER+. Mine were too. I just found out yesterday, and was surprised because my onc seemed pretty sure I'd be negative this time since tamox didn't work! So, how were you treated the second time? Are you through treatment? 

All the best,

Helen 

Dx 8/4/2010, IDC, <1cm, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Aug 14, 2010 01:49AM LilyLou wrote:

o2behealthy - I'm not very good about being aggressive when talking to my Drs either.  Every time I go for Herceptin, they do blood tests and then I see my Oncologist which is good because I can accumulate questions each 3 weeks.  Last time I asked about a scan and was also told only if symptomatic.  ??  Once you are symptomatic isn't it a little late when it could have been caught earlier?  I am wondering if this is an insurance thing & something they don't want to pay for ??  I continue Herceptin till year end so I have time to bring the subject up again but wanted to have more info on the types of scans and so forth.  

I don't understand how they do a Mammogram once you have had a Bmx ??  I can see an MRI and realize there is still breast tissue to be checked so this is good but a Mammogram??? 

LilyLou in Central Indiana .. TCHx4 + H1yr - 1/18 to 3/23/10 - Bmx 4/14/10 w/Single Stage Implants .. "When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile." ..unknown Dx 11/23/2009, DCIS, 2cm, Stage I, Grade 2, 2/30 nodes, ER-/PR-, HER2+
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Aug 15, 2010 01:39AM LilyLou wrote:

..

LilyLou in Central Indiana .. TCHx4 + H1yr - 1/18 to 3/23/10 - Bmx 4/14/10 w/Single Stage Implants .. "When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile." ..unknown Dx 11/23/2009, DCIS, 2cm, Stage I, Grade 2, 2/30 nodes, ER-/PR-, HER2+
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Aug 30, 2010 11:21PM crazylifex3 wrote:

LilyLou,

They don't do mammos after a bilateral, well at least with me they didnt. My Onc told me that they wait and see how you feel. I personally told her that that was a pretty shitty way to have to live... 6 years out and I go in for surgery on Sept. 15th. I found bumps in my mastectomy scar and they did an ultrasound cuz I can't have an MRI because of a heart attack and a stent in place. The ultrasound showed a BIRADS category of 5! I'm just hoping that it hasnt spread.........

Surgery 4/14/2004 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 5/4/2004 AC Hormonal Therapy 6/6/2004 Surgery 7/4/2004 Reconstruction (left); Reconstruction (right) Surgery 8/16/2004 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/9/2004 Reconstruction (left); Reconstruction (right) Surgery 2/5/2006 Reconstruction (right) Surgery 3/29/2008 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 8/8/2010 Hormonal Therapy 11/2/2010 Arimidex (anastrozole) Radiation Therapy 12/16/2010 Bone Chemotherapy 3/14/2011 Xeloda (capecitabine) Radiation Therapy 6/7/2011 Bone Hormonal Therapy 1/14/2012 Aromasin (exemestane) Dx 3/2012, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Surgery 4/3/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/12/2012 Bone Radiation Therapy 8/16/2013 Bone Chemotherapy 1/27/2014 Taxol (paclitaxel) Radiation Therapy 6/21/2014 Bone Hormonal Therapy 7/31/2014 Faslodex (fulvestrant) Dx 8/2014, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Chemotherapy 9/25/2014 Halaven (eribulin)
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Aug 31, 2010 12:19AM vanderlady wrote:

Nikki -- Did you find the nodules?  How big were they?  What a shock that must have been for you. I try to be a positive person and move forward but I worry about things like this. 

Pam .... Right NSM 1/5/10 w TE, exchange 6/5/10, revision 12/3/10. Dx 10/31/2009, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 31, 2010 01:22AM LilyLou wrote:

crazylifex3 - How awful for you!  I am so sorry and really hope the surgery on the 15th will get it and it hasn't spread.  Your first time around sounds like a nightmare with the heart problems.  Thanks for the info on mammos after bmx.  Am sending good thoughts and well wishes your way.

LilyLou in Central Indiana .. TCHx4 + H1yr - 1/18 to 3/23/10 - Bmx 4/14/10 w/Single Stage Implants .. "When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile." ..unknown Dx 11/23/2009, DCIS, 2cm, Stage I, Grade 2, 2/30 nodes, ER-/PR-, HER2+
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Sep 1, 2010 03:51AM - edited Sep 1, 2010 03:57AM by kittycat

crazylifex3 - why are they waiting until Sept 15th to do the surgery???  When they found lumps on me (well actually I found them), I had surgery just a few DAYS after my ultrasound!  When I had positive margins, they performed surgery again in a few DAYS after my path report came back.  I hope you have a benign result!!!

I was told that I would get an MRI every year after my bmx.  Too bad I got BC 8 months after surgery!  Anyway, I would think that if you couldn't have an MRI, they would do an ultrasound on a yearly (if not every 6 month) basis.  Ughhh.....  Now that I have had BC twice everyone is looking at me closer.  Even my dermatologist wants to see me every 4 months to check my moles. 

2 time survivor of triple negative BC, postiive for BRCA1 gene mutation! 9 surgeries, 5 months of chemo and 6 weeks of radiation. Dx 6/17/2009, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER-/PR-, HER2- Dx 4/30/2010, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER-/PR-, HER2- Chemotherapy 6/16/2010 AC + T (Taxol) Radiation Therapy 11/15/2010
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Sep 1, 2010 11:40PM o2bhealthy wrote:

LilyLou - I met with my onc and she agreed that after my first post tx mammo, I will not need any more, just an annual MRI.   The reasoning being that now that we know there is less then 5% tissue remaining, mammo's won't show much more then the implants and the MRI would be more productive.  For this I am grateful.   My first MRI will be in Nov.  I will meet with my onc twice a year for basic labs and a physical exam unless I become symptomatic. 

It is a little scary after a year of constant doctors and treatments but I guess it is the norm.

My DH and I won an on going battle with the onc...I have LE in both arms (mild in the Left non cancer side but LE none the less).  I had asked that once my port is removed to have a standing order for foot draws so that I can protect my arms from LE flares.  My onc shut me down and refused my request.  Of course I was so upset I could not think straight and just went home and had a pity party.  Well my DH called and spoke with one of the nurses who went to bat for me and know I have standing orders for foot draw's with the understanding that if they cannot draw from the foot we will have to use the left arm.  VICTORY!!!

Michelle ~ DCIS and IDC - Thyroid Cancer dx 10-27-10, partial thyroidectomy 11-23-10 Dx 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+ Surgery 6/23/2009 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/19/2009 Herceptin (trastuzumab) Chemotherapy 7/19/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/12/2009 Reconstruction (left); Reconstruction (right) Hormonal Therapy 12/1/2009
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Sep 3, 2010 11:05PM crazylifex3 wrote:

Hi Kittycat,

Well i went to a new oncologist todat who finally had blood drawn for a tumor maker. I think they are waiting until the 15th because of the plastic surgeon. He is crammed until October, but fit me inhis schedule i guess. I have implants in and they will pop because my flaps are extremely thin. after my BMX. Thanks for the support. I'm still a nervous wreck, but at least i will have my CT scan and bone scan before my surgery and all my results will be back all at once!

Surgery 4/14/2004 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 5/4/2004 AC Hormonal Therapy 6/6/2004 Surgery 7/4/2004 Reconstruction (left); Reconstruction (right) Surgery 8/16/2004 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/9/2004 Reconstruction (left); Reconstruction (right) Surgery 2/5/2006 Reconstruction (right) Surgery 3/29/2008 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 8/8/2010 Hormonal Therapy 11/2/2010 Arimidex (anastrozole) Radiation Therapy 12/16/2010 Bone Chemotherapy 3/14/2011 Xeloda (capecitabine) Radiation Therapy 6/7/2011 Bone Hormonal Therapy 1/14/2012 Aromasin (exemestane) Dx 3/2012, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Surgery 4/3/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/12/2012 Bone Radiation Therapy 8/16/2013 Bone Chemotherapy 1/27/2014 Taxol (paclitaxel) Radiation Therapy 6/21/2014 Bone Hormonal Therapy 7/31/2014 Faslodex (fulvestrant) Dx 8/2014, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Chemotherapy 9/25/2014 Halaven (eribulin)

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