Has anyone had Reoccurance of DCIS after a Mastectomy

I have

I'm sorry you have. Im in the not diagnosed but waiting period. I had DCIS ER-/Pr- and did double mastectomy. Not even a year later I felt 2 small bumps. Plastic surgeon said probably fat necrosis. Had 1 year follow up with breast surgeon who basically freaked out on me and felt chest wall nodule plus enlarged lymph node. I have an ultrasound scheduled this Thursday.

Pamnash5: So sorry this is happening. I do not believe there would have been anything else you could have done. DCIS treated by mx is a very thorough treatment. Chemo is never used and radiation following mx is extremely rare and used only if margins are still not all clear even with a mx, as in my situation. There is a 1-2%chance of a recurrence and approximately 50% will be invasive. You are the very unlikely 1-2% and for that, I am so sorry. But now, knowing all your treatment options will be very important as there will be options. Being well informed is crucial and it sounds as though you will be. But so far, you did all you could.

i want to thank everyone for their responses. I'm terrified. If I have to do chemo/radiation, will I be able to work? How will I pay my bills if I can't work? All these things are going through my mind. I think what I need, is some Ativan. I can't make next week get here fast enough

Sorry you have to wait so long to get in. That period was the mentally hardest for me. Once I had my plan I could proceed forward, but I felt like I was spinning my wheels in place until then.

Vent anytime. That's what we're here for!

hi ladies. I had a bmx for dcis 5 years ago. Just curious, when your recurrence was found what found it? (Mri? Ultrasound?) did you notice a lump? Pain?

I found a small lump near my chest wall a week or 2 ago. I called the breast surgeon but they cant see me untik fevruary 28. Not sure what to do. Ive had lumps closer to the implants that were found to be fluid pockets feom fat grafting. Weve aspirated them many times- but this spot is pea sized near the chest wall and it concerns me. Thiughts?

kbeee. If i go to my primary dr can they order an mri for it? There was a kid on my sons basketball team tgat fell and hirt his arm and it took over a week to get mri and when he did they found out it was broken.

Will they do an mri right away? Does it work like an ultrasound? Will they be able to tell? Ive never had an mr for my breasts before

ive only seen the oncologist once and that was 5 years ago. I will see what my primary doctor can do. Otherwise, I wait til the 28th....

my thoughts would see about having an ultrasound, then go from there. I had a mastectomy and reconstruction 5 years ago for DCIS. I noticed a small lump as well. I thought it was just fat necrosis. I did go to the Dr, I had an ultrasound. They saw some suspicious tissue so I had a biopsy. I am now Diagnosed with IDC. Just had my MRI today to determine if there is any mets and if so, where. I’m not trying to scare you, but it’s worth investigating. Although you are unable to see your Dr soon. Call and with your given history, request an ultrasound. He he chooses not to do so, ask to see someone else in the network for this matter. That’s pretty much what I did. I hope this help

I have a bit of an update. My her2 came back as negative. I had my MRI today, results are pending. I should know more this wee

Irisheyes, good and important distinction between a recurrence and a new primary breast cancer. One of my pet peeves in my 13 years on this site has been the confusion between the two. As a rule, a recurrence is more concerning since it means that the original cancer has been in the body for all the time since the initial diagnosis. A new primary, on the other hand, is a totally separate cancer which might have developed relatively recently. When breast cancer develops in the contralateral (opposite) breast, it almost always is a new primary, not a recurrence. It's harder to tell when breast cancer develops again in the ipsilateral (same) breast, although the location of the cancer can often be an indicator. Just like every other woman can develop breast cancer, those of us who've had breast cancer one time can of course develop it again, and in fact the risk for us is higher than it is for the average woman. A BMX reduces this risk, but doesn't eliminate it. Most studies suggest that a MX will reduce the risk of a primary breast cancer by about 90%. This leaves a 1% - 2% risk for the average woman, and a higher risk for those who have specific high risk factors such as being BRCA positive.

Having said that, it is also important to understand that a local recurrence is possible after a MX for DCIS. This is very evident from many of the posts in this thread. DCIS is confined to the ducts of the breasts; the misunderstanding is that breast ducts are always and only located centrally within the breast. Not true. Ductal tissue can be pressed right up against the chest wall and right up against the skin. This is evident from the fact that sometimes MX surgery for DCIS does not result in clean margins. I had a 1mm margin by the skin after my MX. Off the top of my head, I can name a long list of women from this site who experienced the same thing. Similarly, I can name a long list of women from this site who had narrow or negative margins for DCIS at the chest wall after a MX. Research has shown that on average, the local (in the breast area) recurrence rate after a MX for DCIS is 1% - 2%, but when there are narrow or positive margins, some studies have found recurrence rates in the 15% range. Unfortunately, when DCIS recurs, approximately 50% of the time it is not discovered until it has already developed to become invasive cancer. Some studies have suggested that after a MX, the risk that a DCIS recurrence will be invasive might be even higher. Certainly the average recurrence rate of 1% - 2% after a MX for DCIS is low, but with 66K women being diagnosed with DCIS in North America every year, and with approximately 30% having a MX, this means that we are talking about 200 to 400 women from each year who will face a local recurrence after a MX for DCIS. This isn't meant to scare anyone - the risk is low - but it's important that anyone who has a MX for DCIS understand that a local recurrence is possible and they must therefore remain watchful. Unfortunately I've seen situations over the years where women who've had a MX for DCIS (or even invasive cancer) have been unaware that a local recurrence can develop, and as a result, they did not get a lump in the MX area checked out quickly enough and the recurrence had a chance to develop. From my understanding, the local recurrence risk after a MX for DCIS is in fact not any different than the local recurrence risk after a MX for invasive cancer.

To the recent posts, in Pamnash's situation, since the cancer just found is in the same breast as the original cancer, unfortunately it quite likely is a recurrence. Mommyathome has not indicated whether her chest wall lump is on the same side as her original cancer or if it's on the contralateral side, so either a recurrence or a new primary is a possibility. Hopefully it's neither, and the lump is benign.

"My doctor believes strongly that because my cancer was the DCIS and I had a mastectomy there is no chance of cancer recurring."

Mommyathome, your doctor is uninformed, delusional, or an idiot to say that there is no chance of cancer recurring. Sorry for being so blunt. The risk is low, but the risk exists. Here is one study - it's an outlier, mind you, with higher recurrence rates than normally seen after a MX for DCIS, but it certainly makes the point that a recurrence is possible: https://link.springer.com/article/10.1245/s10434-016-5673-6

Another study: https://www.redjournal.org/article/S0360-3016(08)03116-7/fulltext

And here: https://www.ncbi.nlm.nih.gov/pubmed/20859695 This one suggests that having a combination of risk factors - young age at time of diagnosis, size of area of DCIS, size of surgical margins, aggressiveness of the DCIS - determine the likelihood of recurrence after a MX for DCIS.

Additional to this, there is also the possibility of a new primary breast cancer, even after a MX. Again this is a low risk, only 1%-2%, but the risk isn't zero.

Hopefully your doctor sends you for an ultrasound, and the ultrasound shows your mass to clearly be benign. If it doesn't, then the Radiologist should suggest additional testing (an MRI maybe?) or a biopsy. If the Radiologist recommends a next step, then it is out of your doctor's hands, which sounds like a good thing. Good luck! Hoping for clearly benign.

This may sound like a stupid question but can you feel lumps on your chest wall behind your implant? Or are people feeling them just under he skin or on the sides near their scars? I cannot feel my chest wall behind my implants at all. I’m just curious as to what others are feeling.

Thanks Beesie. That makes sense. I was not even thinking about subpec implants. ! I do worry about recurrence with my high oncotype score. We are doing annual ultrasounds and MRI’s to help but time will tell. One of my friends has been diagnosed three times, all new primaries, but is doing well. This beast is relentless.

@Mommyathome I’m in a very similar situation as you are. DMX for DCIS. Final pathology report revealed IDC(tubular type)in the breast that only showed DCIS and LCIS in all quadrants of my “prophylactic breast “. My current area of suspicion is in my underarm, on my cancer side. I had an ultrasound and it showed nothing, I would have felt better if they said it was scar tissue, or something ...but they couldn’t see anything. It can be felt though, so what is it? I’m currently waiting on an MRI to be scheduled in hopes of more definitive answers. Not sure what to do if MRI is “clear”. Let us know how it goes for you. Wishing you all the best