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 03:17PM

Posted on: Jan 17, 2009 03:17PM

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 3, 2010 08:28PM crazylifex3 wrote:

Hi Pamelajo,

I too had Hodgkin's Lymphoma! I was diagnosed when i was 14 and had chemo and radiation.Do you recall what chemo you had? I had CVVP, it was an experimental chemo from what i remember. I aslo had a BMX in 2004 for BC from previous radiation TX's. I am fortunate that they found it early because I was only 32. I had actually hurt my back at work and they did an MRI and found that my spine was suspicious for mets. Thankfully it wasn't, just the BC there. I had one dose of adrimycian and cytoxan and stopped because it damaged my heart. I know have cariomyopathy from that and in 2008 had a heart attack. I have a stent in so no more MRI's for me. I had 5 reconstruction surgeries(TE's) 2 sets of expanders and 3 implant echanges. On Sept. 15th I go in for surgey for 2 skin nodules and a lg. mass along my mastectomy scar. I was a birads 5 on the ultrasound and I'm pretty positive that it's cancer...Time will tell I guess. I hope and pray for you and please fell free to message me privately if you like. It's unbelieveable that they treat individuals with radiation for one cancer only to have that person develop another in the future. TOATALLY SUCKS!!!!! Hang in there~ 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 4, 2010 09:47PM beckward wrote:

Hi you guys!  Thanks for all of the good info and positive vibes.  I, too had a BMX (5/08) with reconst. after <1cm ILC with LCIS discovered during the BMX. No chemo, rads or tamox.  I've got a 2mm lump in same spot as original BC.  Initial ultrasound is inconclusive (cyst?).  Too close to implant for a needle biopsy, so waiting until the 15th for another ultrasound.

Interesting that you are all IDC and DCIS girls.  I would have thought there would be more recurrence with Lobular.  Hmm. 

My question...did anybody lose their implants for a biopsy? If this thing can't be reached with a needle without puncturing the implant, I'm going to have an excision.  I guess this means they take out as much as possible while they're in there.  I love my reconstruction...it's the one good thing I've got.  I've been so lucky...what are the chances I dodge this bullet, too? 

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Sep 4, 2010 11:02PM LilyLou wrote:

Hi Everyone - Was just reading back through this thread and wonder how Simdavidson is doing - she started the thread but no notes from her in a while.  Anyone in communication with her?  

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 6, 2010 03:01PM crazylifex3 wrote:

Hi Beckward,

I know on the 15th when I have my surgery that there is going to be a plastic surgeon on standby because there is a great chance of them popping the implant. I never had tatooing done because there was a 75% cahnce of them poppin then.I guess initially they scaped the flaps alot to make sure they got all the cancer cells. I wish you the best of luck and please keep in touch!

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 9, 2010 03:46PM Pamelajo wrote:

can I just add that cancer sucks..... alot?  no, that's not a question, that's a bonafide statement.

we have to keep thinking to ourselves that this will NEVER happen to us again.  If you believe it, you can achieve it.  (and it sounds like so much blah blah blah in my head as I say it, so yea,) but seriously, this whole breast cancer thing is out of &()Y^&% control.

I have no breast tissue left.  I've had mx, recurred (tho the onc says it's a progression of disease, not a recurrence or new primary) had a lumpectomy on the mastectomy (didn't know that was friggin possible), and finished chemo a second time for bc.  I'll start rads in two weeks. 

THROW THE KITCHEN SINK AT ME!!!  I'll step up to the plate and knock that thing outta the park. 

Since having my last abraxane a couple weeks ago, I've noticed my right recon'd foob isn't quite as red and the little spotty bumps are slowly fading.  Makes me think all that poison was building up on my lymphedema side and ruining my much loved fooblette!!!!  dang chemo.  And here all this time I've been pondering "is it cancer? could it be cancer while I'm on chemo??"  geez.....  paranoid much?

Anyway, crazylifex3, I give you fistbump for being not only a breastfriend but also a fellow hodgkins survivor.  We are few and far between thank God, but I'm happy to be in your company.  You are in my prayers

Bi lateral mastectomy 7/29/09 BC is a secondary cancer from earlier Hodgkins lymphoma treatment. Began chemo 9/09/09. Recurrence of mutated BC TN 3/2010 in right breast. Back on the treatment plan. Dx 3/16/2010, IDC, <1cm, Stage I, Grade 3, 0/0 nodes, ER-/PR-, HER2-
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Sep 16, 2010 08:00AM marcyilene wrote:

Hi everyone.  I am brand new to this site, and gettingm more terrified by the minute.  I am scheduled for a bilateral mastectomy this coming Monday.  My tumor is a ductal carcinoma, mildly invasive, stage 1, and it is apparently slow-growing, only in the right breast.  I do not know much more than that. I have decided to remove both breasts.  I was diagnosed two months ago, and it has been a long and painful journey deciding on lumpectomy vs. mastectomy.  I just read your post, Cathi, and I am very confused, not to mention terrified.  Am I not understanding something?  Where it says "locoregional recurrence of breast cancer occurs 5% to 40% of patients whose primary disease was initially managed by mastectomy, and up to one third of these patients will have concomitant distant organ metastases".  How can this be possible?  Am I to believe that everyone is lying to me?  Everything I have read EVERYWHERE, including the statistics from the National Cancer Institute have all basically said the same thing -- that the rate of recurrence is LESS for a mastectomy than a lumpectomy, but both are around 5% to 10%.  What the information from your link says indicates that the rates are actually HIGHER for a mastectomy, and a lot higher than what I read elsewhere, unless I am completely misunderstanding what was written there.  40% is almost half.  That means that almost half of the people who get a mastectomy will get a recurrence?  I have only begun this journey and I'm terrified beyond belief.  Please tell me if I am misunderstanding what is written here.

Marcy
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Sep 16, 2010 08:40AM lago wrote:

As far as scans I hear the reason why they don't do these yearly or every 6 months is typically the cancer is too small to see if you are asymptomatic. 

I was told that BMX does not get mammograms. I will be examined by my BS and Oncologist every 3 months (alternating doctors) the first year then I think every 6 months for at least 3 years maybe more. I didn't pay too much attention. Just figured I'd make appointments as needed.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2-
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Sep 16, 2010 08:51AM lago wrote:

marcyilene Do not let everything your read drive you crazy. A lot of the information out there is dated, not correct or doesn't have all the factors in the results and therefore you may not be understanding it properly.

For Example: Many of the stats out there (dated) regarding HER2+ tumors have me dead in 5 years... this is not the case since the new drug Herceptin has been introduced into the treatment equation.  

-----------------------------------------

Also everyone's case is different. Ask your physicians these questions. 40% might be correct in some mastectomy cases where the margins were poor, margins close, tumor was very large (in small breast) or the tumor was sitting on the chest wall… or  you had a lousy surgeon. I assume you had a good one.

I use online information as a source to help me form questions to ask my doctors. I DO NOT assume what I am reading online is accurate.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2-
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Sep 16, 2010 11:36AM Medigal wrote:

Although I had given him permission to take the entire breast where the bc lump was, my surgeon refused to do it.  He instead hit me with several weeks of Chemo and 35 radiations after a lumpectomy.  He seemed more concerned about getting any loose cells with Chemo and rads than taking the entire breast.  I was angry with him at the time but since I have learned more, I think he made the right decision for "me".  He also made sure I was put on Arimidex a while after finishing the other treatments.  I am now into my 6th year of Arimidex trying to make it to 10 years.  What happens after that, if I am still ok, is still a question mark.  Personally, I would never do any type of mastectomy unless I followed it up with Chemo and Rads to protect myself from anything "roaming" as they say.  Only time will tell which Oncs are making the right decisions for their patients.

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Sep 16, 2010 12:52PM marcyilene wrote:

Thanks so much.  This is all new to me.  My friend told me this is a wonderful site, and I resisted coming.  It's taken me this long for all of it to be real.  Monday it will be real.

Marcy

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