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Topic: Has anyone had Reoccurance of DCIS after a Mastectomy

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: May 12, 2009 05:04PM

ClaudiaBernard08 wrote:

I had DCIS - Comedo type, High Nuclear Grade, with micro invasion in 2006. I had a full mastectomy and breast reconstructive surgery. What are the odds of this cancer returning? I am worried it will. BC does not run in my family, I am 54 years old and in good health. I did not have chemo or radiation. Thanks everyone!  - Fondly Claudia

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Posts 121 - 138 (138 total)

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Feb 29, 2012 04:45PM smva wrote:

I had DCIS in Feb. 1979 and had a mastectomy.  Do not know grade or anything else since it was not on pathology report.  No chemo or radiation.  Just recently I was diagnosed with IDC in other breast, a new primary tumor.  Am happy for the 32 cancer-free years but was surprised with this diagnosis.  It was a Stage I, Grade 1 tumor, 1 cm.  Am doing CMF chemo, then Arimidex for 5 years.  I am 71 years old.  BC and ovarian cancer do run in my family, even though we are all BRAC 1 & 2 negative.   

Dx 2/6/1979, DCIS, <1cm, Stage 0, Grade 1, 0/26 nodes Surgery 2/13/1979 Mastectomy: Right; Lymph node removal: Underarm/Axillary, Right Dx 11/10/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR-, HER2- Chemotherapy 1/30/2012 CMF Surgery 11/28/2012 Mastectomy: Left; Lymph node removal: Sentinel, Left
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Mar 1, 2012 11:51PM cinnamonsmiles wrote:

I know of three women prior to this thread of women who had DCIS come back. Two of the women had DCIS in their mastecomy scars. One woman had DCIS and years later it came back as stage four. I know it is rare, but it can happen. I know one of the women were told that she had a milk duct left in her breast after the mastecomy. I don't know what kind of reconstruction she had and if that makes a difference. I didn't have reconstruction so I am not familiar.

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Mar 4, 2012 10:17PM Ulightup wrote:

Hi everyone. Unfortunately I fell into the 1-3%cancer recurrence after dcis. Originally diagnosed in 2005 and opted for mastectomy, sentinel node biopsy and reconstruction. I was supposed to celebrate my 7 year of being cancer free this month but I noticed in a lump near my mastectomy incision. I now have stage 1 breast cancer and need more aggressive treatment. We decided not to remove the axillary lymph nodes since PET , MRI and no palpable mass and the docs didnt want to increase lymphedema risk. We are treating it aggressively by doing 6 rounds of TC and radiation to both the breast and axilla. And I also need tamoxifen
Anyway I am glad to report that my 1st chemo went well and I'm due for 2 nd round on Wednesday .
It is important to stay on top of your checkups and tests. If possible ask for an MRI. Even though stage 0 is considered the precancerous stage and having a mastectomy is aggressive approach, it can still come back. Be proactive and Listen to your instinct.

Dx 1/17/2012, IDC, 1cm, Stage IB, ER+/PR+, HER2-
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Mar 5, 2012 02:30PM 1openheart wrote:

Oh, ulightup....so sorry to hear about your recurrence.  I am just now approaching a year since my DCIS dx.  I just heard from my insurance co. that they will pay for a MRI at my one year anniversary check up.  I opted to keep my unaffected breast and my breast is dense, so we need to watch her carefully.  

I hope that your chemo treatments continue to go well for you and that this will be the last time you have to deal with this beast.



"The wound is the place where the light enters you." ~ Rumi Dx 4/28/2011, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 6/14/2011 Mastectomy: Left; Lymph node removal: Sentinel, Left; Reconstruction (left): Nipple reconstruction
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Mar 5, 2012 11:59PM Ulightup wrote:

1openheart- hi. Surprisingly I am handling the chemo well even the loss of hair. I have three wigs that I plan to rock! I'm going to beat this a second time.
I'm glad you are getting an MRI. Keep staying positive and proactive with your health.
You are in control.

Dx 1/17/2012, IDC, 1cm, Stage IB, ER+/PR+, HER2-
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Mar 27, 2012 04:31AM Rubes79 wrote:

Hi Bessie. I appreciate all of your posts. I am new to the BC posting. I am 32 years old and I was diagnosed with DCIS January 13th, 2012 after having a lumpectomy from two different sections of my right breast, after an initial dx of ADH core needle and stereotactic biopsies. The only reason my GYN sent me over for a mammogram and ultrasound was due to the fact that I mentioned a nipple discharge to her at my annual exam. There was no palpable mass. I will always be greatful to her for that referral. I opted to get a bilateral mastectomy because I did not want to risk going through all of the motions again in anticipation of the other breast succumbing to the same fate. On the second opinion I received, i was notified that at my age I was more likely to develop DCIS or ADH/LDH in the other breast and be placed on Tamoxifen which has its own side effects. I have no history of breast cancer in my family and my BRCA testing was negative. I also saw an Onc, who ordered a CT Scan and did not recommend any further treatment at this time, although I will be seeing him again in 3 months for a repeat of the CT Scan just to confirm that there are still no malignancies present. I also opted to go with expanders and implants for reconstruction, to avoid additional trauma of healing from abdominal surgery along with bilateral mastectomy. I was concerned as well about developing a new malignancy, or having a recurrence in the chest wall. As I pray and have taken all of the other precautions to have the best outcome as possible, I choose to just move on with my life and try to provide additional moral support for other survivors and words of encouragement.

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Apr 2, 2012 04:35PM Krisseykatz wrote:

Hi there...I haven't been here in FOREVA..but, I decided to do a search and see my risk of METS after Local Reccurence.  As in my first post back in 2009?  I had DCIS which was so extensive I ended up with Bi-Laterals when Hyperplasia was discovered in my other breast.  I had a second opinion and both "agreed" that there was no micro invasion...it was DCIS grade 3.  I watched 3 new tumors grow before my very eyes on my skin where my "breast" was.  3 new tumors...IDC, ILC and a mix of DCIS.  I was the less than 1%...it does happen...I guess that is why there is a 1%,..not funny...anyway...since I am 4 years out?  I am beginning to do the countdown...what IS the ODDS after Mets after Local Recurrence?

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May 22, 2012 04:43PM Torkerr wrote:

I had DCIS stage 0, 2009. I had bilateral mastectomy. Cancer came back 2012, in skin and chest wall area near first biopsy site. I had no chemo or radiation. My breast surgeon also was complacient and I was not refered to an Oncologist until second reaccurance. My surgeon was sure it could not be cancer. I only had the "surgeon" as my guide. Well, DCIS Stage 0 can come back. I don't know why.
Now we ( Oncologist, breast health navigator)are treating it aggressively, chemo,radiation, surgery and Tamoxifen.
I am not sure I want to use the same breast surgeon. Did he have his chance?????
I'll take any feedback...

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Jan 8, 2014 04:37AM RunToTheMountains wrote:

I know this is old but hoped someone would see/respond. I had mastectomy May 2013-paget's breast disease, high nuclear grade extensive DCIS ER PR negative with "extremely close" margins.  I was told we would "watch it." 

Now 6 months or so later I have red bumps on my nape of neck and scalp.  I couldn't really see it but had someone else look and take a pic. Of course I googled it and what comes up but "scalp mets."  I thought it was some kind of cruel joke.  I wasn't thinking it could be cancer but some sort of rash. Now I am looking for everything about scalp mets and photos and of course my bumps look just like it. I will go to my oncologist but is it possible for DCIS to go this route?

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Jan 8, 2014 12:55PM Beesie wrote:


No, it's not possible for DCIS to go this route without having had an invasive local (i.e. in the breast area) recurrence first.  Pure DCIS cannot move beyond the breast.  However you can develop a local recurrence after a diagnosis of DCIS and that recurrence might not be detected until it's already become invasive cancer.  At that point, the cancer could spread. 

Do you have any evidence of any lumps or redness around your breast area, any sign that you might have a local recurrence?

I know that you are planning to see your oncologist, but you might also want to see if you can get into your family doctor.  This probably is a rash and your family doctor might be able to identify it as such and prescribe an antibiotic or topical treatment.  If it clears up, then you'll know that it's not mets. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 8, 2014 11:28PM , edited Jan 8, 2014 11:29PM by lisagwa

RunToTheMountains- Please keep us posted as to what the red bumps are. Wishing you the best.

Dx 2/2012, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 3/22/2012 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 6/18/2012 Reconstruction (left); Reconstruction (right)
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May 15, 2014 12:45AM rosemamma88 wrote:

I know this is an old post. However, I wanted to post my story since I haven't received an answer yet on my new post about this. Valentines Day, 2011, I had a BLM for stage 0/DCIS.  Grade 3 with comedo...ER+ Sentinel node was clear and I had immediate reconstruction and implants after 6 months.  No radiation, no drugs, nothing.   I put cancer out of my mind and went on.  Last year I had some pain, left side, same area as cancer.  Blew it off.  Went to BS last Aug.  she and I both did not feel a lump. Told me to come back if it's still bothering me, we'd do an MRI.  Well, with insurance reasons and high deductible I didn't think I needed that.  Pain would come and go. Last month I noticed a lump there.  BS felt it too. Ultrasound showed 1.25 cm something. She was hoping Fat Necrosis. MRI it lit up...still could be fat necrosis that can light up on MRI 1.4 cm on MRI. biopsy monday.  Results today- recurrence.  I am floored.  I was in my own happy place of moving on, now 3+ years later to have this.  Looks like radiation and tamoxifen are in my near future.  Maybe chemo depending on the HER2 results.  It does happen but I never thought it really could!  those 1-2% seem to go out of your mind because it's always 'someone else'.  I AM that 2%.  Honestly, after finding the lump and waiting these past few weeks while this process moved along, I would read these forums to see if it was possible.  I realized then that this is probably what it was, I knew it in my heart but had to wait and hope I was being paranoid.  

I wish there was a better way to screen for recurrence for those of us who've had a mastectomy with implants and can't have a mammogram.  There's no cheap way that insurance will allow as just a screening.  I had a $1,000 deductible to do an MRI which kept me from jumping on it last year.

Just wanted to share my story.  Not to scare anyone, but to help you understand it CAN happen and to get checked out.

www.waitingforned.blogspot.com Dx 1/6/2011, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+ Surgery 2/13/2011 Mastectomy: Left, Right; Lymph node removal: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 5/14/2014, IDC, 1cm, Grade 3, ER+/PR+, HER2+ Dx 5/14/2014, IDC, <1cm, Stage IB, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/17/2014 Lumpectomy: Left Targeted Therapy 7/17/2014 Perjeta (pertuzumab) Chemotherapy 7/17/2014 Taxotere (docetaxel) Targeted Therapy 7/17/2014 Herceptin (trastuzumab) Surgery 11/30/2014 Lumpectomy: Left
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May 15, 2014 08:31AM farmerlucy wrote:

Rosemama - That really suck! I'm really sorry. Gentle hug.

Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal Hormonal Therapy 4/23/2015 Femara (letrozole)
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May 16, 2014 11:20AM lisagwa wrote:

Rosemamma- thanks for sharing your story. I am sorry to hear this.  it sounds like you kept on top of it and followed through to do the best for yourself. Please continue to keep us posted. ((Hugs)) 


Dx 2/2012, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 3/22/2012 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 6/18/2012 Reconstruction (left); Reconstruction (right)
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Jun 28, 2015 04:19PM jodib wrote:

Hi. I was diagnosed with DCIS in April of 2015. I am scheduled for a double mastectomy on July 1 2015. Has anyone had nipple sparing surgery? There are actually so many options. Does anyone think that it increases my risk keeping the nipples? I have been given the ok by my DR to keep them. Since there is always a % of breast tissue left and I was told they were no where near the effected areas, I was thinking about keeping them. I have been told by my doctor that I will be on tamoxifen following my surgeries. Perhaps another reason it would be ok to keep the nipples. Thank you Bessie for the clarification on DCIS. It is appreciated.

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Jul 6, 2015 03:31PM dessert1st wrote:

Rosemamma and others - thank you for sharing your stories. I had a BMX (right MX first then yr later Left MX) and recently found a pea sized lump in the breast that had atypical cells, but no DCIS or cancer. I am going to BS on Wednesday and hoping that my gut is wrong in that I don't fall into that small percentage. But, they call me their special patient since I had a hemotoma after the Left MX, then a blood clot. The chances of that are slim and of course it was me! This lump is not near the scar, but on the inner side near. Interesting to read here that this does happen...maybe too many times.

hugs to you all.. judy

Dx 9/17/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/5 nodes, ER-/PR- Surgery 10/31/2012 Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 5/15/2013 Reconstruction (right) Dx 1/6/2014 Surgery 2/12/2014 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement
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Jul 9, 2015 06:53PM iLUV2knit wrote:

I am posting because I am scared and wanting some words of encouragement as I await a pending MRI. I have been having horrid migraines and missing quite a bit of work. I went back to the doctor again for a fourth time and complained. She ordered a CT scan which showed an irregular shadow on the frontal and temporal lobe area. She told me to try not to worry but with my history, is impossible. Waiting is the worst.

I am nearing my 4th year cancerversary in October for BMX and shouldn't have any cancer that escaped because it was all DCIS and according to Beesie, this is impossible.

I am hoping they don't find cancer. I am only 53 and have a daughter getting married in ten months. Plus my hubby and I are finallllllly empty nesters for the first time in 30 years!

Your life is now~ John Cougar Mellencamp Dx 8/18/2011, DCIS, Right, <1cm, Stage 0, Grade 1, 0/2 nodes, ER+/PR+
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Jul 9, 2015 09:13PM Mommyathome wrote:


The same thing happened to me a few months back. I came home from work and I couldn't see. I was seeing zig zags so I called my primary doctor. She told me to go to ER to be evaluated. They did mri and found a cyst. Of course I freaked out!! My mind went right to cancer but when I met with the neurologist and he compared past mris with this one he said there's been no change, he feels this is benign. He said I could have even been born with it. The vision issues were not due to the cyst but a migraine! Hopefully you will get good news! My dr put me on topamax for migraines

Surgery 11/19/2013 Lumpectomy: Left Dx 11/20/2013 Dx 12/4/2013, LCIS Dx 12/4/2013, DCIS, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 1/28/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/1/2014 Reconstruction (left); Reconstruction (right) Surgery 6/30/2014 Prophylactic ovary removal Surgery 3/22/2015 Reconstruction (left)

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