Has anyone had Reoccurance of DCIS after a Mastectomy

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  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019
  • Moderators
    Moderators Member Posts: 25,912
    edited February 2019

    Welcome, Pamnash! We’re so sorry you find yourself here for the second time, but we’re so glad you’ve joined us here! You’ve come to the right place for support!

    The Mods

  • ps0705
    ps0705 Member Posts: 122
    edited February 2019

    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.

  • ps0705
    ps0705 Member Posts: 122
    edited February 2019

    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.

  • TB90
    TB90 Member Posts: 992
    edited February 2019

    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.

  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019

    I appreciate your post. I have a similar situation. 5 years ago I was diagnosed withDCIS stage 0. I had a mastectomy/reconstruction. Chemo/radiation and further treatment wasn’t recommended. I felt a lump in my reconstructed breast a couple of months ago. Had an ultrasound, then biopsy. I was just recently diagnosed with IDC grade 2-3 Pr+Er+, her2 was unequivocal. I’m scared to death. I need to go for mei, pet scan. As I sit here freaking out. Every little discomfort has me thinking the cancer is spreading while I await my appointment next week. I’m a mess. I certainly appreciate your pos

  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019

    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

  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019

    I'm sorry you have to wait. It's a daughnting feeling. My results came a day early. The breast care nurse left a message on my voicemail saying she had my results, asking if I could come in at 2 pm. This was 10 am. I tried calling frantically all day long. I left messages. Finally, at 3pm she called. I wanted the results then, so she told me over the phone

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    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!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited February 2019

    Hi Pamnash,

    A lot of women work through radiation, and some do work through chemo. I think it depends on how your individual body responds, and on the course of treatment, on your job, etc.

    I hope that you will be feeling well enough to work, but in case you can't, there are lots of organizations who will help patients under active treatment with money for rent/transportation/groceries, etc. It can be a lot of research and organization to get all the paperwork and documentation in, during a stressful time, but the resources are there. Your treatment center may even have a social worker who can help you with all of it.

    If you think Ativan will help, call your doctor and ask them to send an rx to a pharmacy! If they're seeing you next week anyway, they can likely do that.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    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
    KBeee Member Posts: 5,109
    edited February 2019

    If the surgeon won't get you in until then, call and ask to be seen by someone else. If no one can see you, see your PCP and have that person order an MRI. Hoping it is benign.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    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

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    They may be able to order an MRI; it may depend on insurance. Some make you do an ultrasound first. For sure, your primary should be able to order that. Some will say that they'd prefer it left to the oncologist, but if you explain the situation, I'd think they would. Mine has ordered things before. If they won't, then call the MO. I can get in with my MO easier than my BS, so that is who I call for things like that and he's ordered MRIs for me to evaluate lumps.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    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....

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    You could still call the oncologist's office and speak with a nurse for advice. Call your PCP too. Perhaps one of them can order it without you even coming in. It just takes a phone call. Best wishes. Waiting is frustrating.

  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019

    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

  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019

    MRIs have to go through an approval process with insurance. It took me about a week to get min

  • Pamnash5
    Pamnash5 Member Posts: 8
    edited February 2019

    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

  • Irisheyes92546
    Irisheyes92546 Member Posts: 4
    edited February 2019

    You have to be mindful of terminology. Recurring or returning cancer refers to the very same family of cancer cells forming a new lesion. It is not a new cancer, it is the same old cancer. It means that some of the cancer escaped. If one has a mastectomy for DCIS with no lymph node involvement, and the pathology report shows no invasion, there is very little likelihood of recurrence. For one thing, there is very little breast tissue remaining on the mastectomy side.

    If you get a NEW cancer, which is possible, that is NOT considered a recurrence. It is a second cancer. Please people, do not use the term recurrence to refer to a new cancer. One has the same chance of getting a second cancer as you had of getting the first one. The same factors that resulted in the first cancer continue to operate in you, and since you got the first one you may very likely get a second one.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2019

    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.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    beesie,

    Originally my calcifications were found on the left breast. When the doctor did the lumpectomy and biopsy they found DCIS. I chose to do a bilateral mastectomy. Originally the right breast was not an issue based on the mammogram however when I get the pathology back it was LCIS in the right side as well.

    This new lump im feeling is on the left side which is the side where the DCIS was located. My doctor believes strongly that because my cancer was the DCIS and I had a mastectomy there is no chance of cancer returning.

    I’m scheduled to go to her on February 28 for this small pea sized hard lump I’m feeling or the chest wall. My hope is that it will be ultrasound to see if there is an Issue. Other than the ultrasound I don’t believe she’ll do anything else is there something I should be requesting?


  • Beesie
    Beesie Member Posts: 12,240
    edited February 2019

    "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.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    Beesie the breast surgeon doea the ultrasound in her office

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited February 2019

    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.
  • Beesie
    Beesie Member Posts: 12,240
    edited February 2019

    Legomaster, I can't answer for Mommyathome, but in my case, with sub-pectoral implants, the chest wall is pushed right up behind the skin, so a recurrence on either the chest wall or against the skin would be easily noticeable. To me, that was one of the big advantages of sub-pectoral reconstruction.

    Mommyathome, the ultrasound being done at your doctor's office is a problem. Personally I've always favoured having imaging done at well established 3rd party screening facilities, or at hospital facilities, because they are impartial and more likely to have the critical mass to be able to hire expert Radiologists. I don't know what you can do if you aren't satisfied with the screening, except push really hard for additional tests.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited February 2019

    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
    Mommyathome Member Posts: 1,111
    edited February 2019

    where im feeling a lumpis actually below the collarbone closer to the cleavage area. Its above the implant.

    I have an appt woth my primary geb 25 for a regular visit im going to ask her oponion too and maybe she will send me for an mri or uktrasound.

  • pinkvictory
    pinkvictory Member Posts: 58
    edited February 2019

    @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


  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited February 2019

    pinkvictory-good luck with the MRI. Its certainly nerve wracking!!! Im not sure what my primary dr will do on the 25th. Im hoping she will try to get an mri for me., i also go to bs on 28th. There im expecting they will do an ultrasound.

    It sucks that im so paranoid if i feel a lump but im not taking an chances!

    Keep us posted on what ur doctor says

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