Has anyone had Reoccurance of DCIS after a Mastectomy

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited March 2012

    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.

  • Ulightup
    Ulightup Member Posts: 57
    edited March 2012

    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.

  • 1openheart
    1openheart Member Posts: 765
    edited March 2012

    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.

    Hugs,

    cathy 

  • Ulightup
    Ulightup Member Posts: 57
    edited March 2012

    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.

  • Rubes79
    Rubes79 Member Posts: 2
    edited March 2012

    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.

  • Krisseykatz
    Krisseykatz Member Posts: 21
    edited April 2012

    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?

  • Torkerr
    Torkerr Member Posts: 1
    edited May 2012

    Hello,

    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...

    Thanks













  • RunToTheMountains
    RunToTheMountains Member Posts: 7
    edited January 2014

    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?

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2014

    RunToTheMountains,

    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. 

  • lisagwa
    lisagwa Member Posts: 232
    edited January 2014

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

  • rosemamma88
    rosemamma88 Member Posts: 22
    edited May 2014

    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.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2014

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

  • lisagwa
    lisagwa Member Posts: 232
    edited May 2014

    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)) 

    Lisa

  • jodib
    jodib Member Posts: 6
    edited June 2015

    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.

  • dessert1st
    dessert1st Member Posts: 190
    edited July 2015

    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

  • iLUV2knit
    iLUV2knit Member Posts: 157
    edited July 2015

    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!


  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited July 2015

    iluv2knit,

    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

  • Foobmama
    Foobmama Member Posts: 12
    edited February 2018

    I had DCIS and with invasive ductal carcinoma nuclear grade 3 fourteen years ago and underwent double mastectomy and reconstruction following four rounds of chemo, no radiation. Two weeks ago I found out my cancer had returned to the same breast, definite recurrence. I will be having another double mastectomy with reconstruction because I'm not letting cancer take one more thing from me than it already has, and I will have radiation this time but I'm not sure about chemo because I already have neuropathy and ear ringing from Ménière's disease and my onco doesn't want to leave me with more of that than necessary. So yes, I'm pretty sure this can come back after you've had a double mastectomy.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2018

    Sorry you’r Dealing with a recurrence.

  • Txgatata
    Txgatata Member Posts: 60
    edited February 2018

    I was just like you in 2011 and had a skin soaring nipple sparing DMX in 2011 for DCIS. No node testing, no chemo, just surgery and done. Three years later, I found a lump in 2014 and they said it was a recurrence of DCIS and IDC. Chemo, rads and aromasin for me. Guess what? Three years later, I developed a cough that wouldn’t go away and after a CT and biopsy they found breast cancer hadn’t metastasized to my lung lymph nodes. Apparently, the IDC had been there all along so not sure if mine came back or we just never got it all. Now they test lymph nodes with DCIS so hopefully this doesn’t happen to others. I am doing well thanks to Ibrance and FASlodex. Finish radiation in March.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2018

    hoping you ladies can help. I was diagnosed in December 2013 with dcis. I had a bilateral mastectomy January 2014. I didn't need chemo, radiation or tamoxifen. I don't take any cancer meds or see oncologist. I do however see the breast surgeon and plastic surgeon every 6 months.

    As part of my reconstruction, I had fat grafting done to fix divots in the upper portion of my breast. Since, I've had to have fluid aspirated every 6 months because it causes. Lumps and pain. The first time the doctor sent the fluid to pathology to be checked. Each time after she just disposed of the fluid.

    Well, here I am tonight. I have 3 painful lumps. A small part of me says don't worry about but the scared bigger part says call the doctor tomorrow. I know, because it's happened many times before when I cAlled with concerns, she's going to say you had dcis. It wasn't invasive and we did mastectomy. You have almost no chance of reoccurrence. But I know the truth because I see women on here with reoccurrence after having a mastectomy for dcis.

    Thoughts?! By the way I'm definitely calling. I just know what her reaction is going to be

  • Mc16
    Mc16 Member Posts: 10
    edited March 2018

    Hi Mommy, I have a very similar story to you. DCIS and a BMX 10/17.
    I was considering fat grafting. But having read threads I worry that this
    might mask areas of concern or like you cause pain.

    I am seeing my BS tomorrow and my main question will be on monitoring.
    If she isn't happy to see me when I have a problem, I'm going to get another
    doctor.


    I do not think you are being unreasonable at all. I hope you get some answers


    and some relief from your pain.
  • KBeee
    KBeee Member Posts: 5,109
    edited March 2018

    Definitely get it checked. If they do not take you seriously, go elsewhere. I did that and it was the best decision I ever made. My prior MO told me I was at no risk for recurrence. You can see by my stats, he was wrong.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2018

    kbeee were you diagnosed with dcis and later with invasive

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2018

    mc16,

    Thanks good luck tomorrow. Keep me posted. I was able to get appointment for Thursday. We will see. Im afraid it's going to be the same.... she tells me I shouldn't worry. Don't even check in between 6 month visits because I drive myself nuts. But I feel lumps!!! I know a recurrence can happen.... it has to women on here!!

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2018

    The first time it was invasive with a small DCIS component. I was node negative however, and considered pretty low risk, so my former MO pretty much blew off any new lumps

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2018

    hi ladies. Had my appt today. Breast surgeon felt the lumps I did. She ultrasounded the breast and said the lumps are due to fat grafting... necrosis.

  • ClaudiaBernard08
    ClaudiaBernard08 Member Posts: 11
    edited March 2018

    Hello to All... so sadly after my 2008 post, I was j diagnosed with a second invasive DCIS in my right breast 11/2017. I had another full mastectomy right before Thanksgiving 2017,lymph node removal, infusions, and am currently on Arimidex and Zometa. The interesting thing about this second cancer is that it was not a recurrence! This was a whole new cancer. The first BC I had was hormone receptive negative and this new cancer was hormone receptive positive! Very odd! But so glad it wasn't a recurrence or that would have meant that the first BC traveled in my body to my other breast. The Zometa has made me SICK, SICK, SICK. Bone aches, muscle aches along with chills and fever. Thank goodness I only have to take this drug every 6 months for 3 years. My question to all is this, did anyone also experience any of these symptoms? And, if so, did you take Claritin or Percocet before and after your infusion. I've heard that Percocet is a strange drug and can make you feel worse, but that Claritin can help with inflammation. I also just finished with breast reconstructive surgery including areola and nipple reconstruciton followed up with tattooing. I'm almost whole!! I love it. Blessings to all on this site. FIGHT FOR THE CAUSE Warriors!!

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2018

    Claudia,

    If it's dcis how can it be invasive? Dcis means it didn't spread or become invasive. I sometimes get confused with the terminology.

  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019

    5 years ago, I was diagnosed with DCIS. I opted for a mastectomy and reconstruction. my lymph nodes were checked and all clear. I met with the oncologist, and was told, chemo and other treatments were not recommended. I was all clear. A few months ago, on my reconstructed breast I found a lump. Thought maybe it was scar tissue or fat necrosis. I finally went and had an ultrasound, I was then sent for a biopsy. I received my results yesterday. My new diagnosis is, idc. It hasn't been staged, but it was a grade 2-3 pr+, Er+, her2 was unequivocal 😱. All I understood was, I have cancer and it's invasive. I meet with the surgeon next week for a bunch of scans to determine if it has metastasized to the lymph nodes or anywhere else. This is scary, annoying, and I can't find any other words to describe. My one regret was not being proactive with my first diagnosis. I never questioned anything. I just did what I was told. This time, my goal is to be proactive and make sure I understand the mechanisms of my specific cancer. That way, I can be a more effective member of my care team, and arm myself and prepare for this fight

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