Has anyone had Reoccurance of DCIS after a Mastectomy

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.

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 

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.

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,

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. 

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.

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

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,

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

Sorry you’r Dealing with a recurrence.

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

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.

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!!

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.

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.