newbie, in limbo re deciding treatment for DCIS found after breast reduction

j_self
j_self Member Posts: 6
in Breast Cancer #1
I've come to this forum a bit backwards.

Had a breast reduction in late summer (pre-op mammo showed nothing) and at my 2 week follow up with the plastic surgeon, he almost casually mentioned while he was removing stitches that the preliminary pathology report had shown some "breast disease in situ" in right breast. said i might need to be on a drug, nothing to worry about. So casually that I actually didn't take in what he was saying. But then he wanted me to see a breast oncologist asap and got me an appointment the next week... had that appointment but final path wasn't availalbe so much of discussion was 'well we need to wait for the pathology' but suggested she'd probably do rads + aromatose inhibitor, or maybe I would need/want bilateral mastectomy instead...

actual pathology a week later:
dcis grade3 comedo w/ necrosis, ER+ (>90%);PR+ (~1%); HER2 3+. Ki 15% single lesion 0.6 cm, no evidence of invasion; stage Tis.

because of breast reduction and clear pre op mammo, tissue sent to pathology was not oriented/marked so there is no way that margins can be assessed. Even though i don't have margins, over 3lbs of tissue were removed from each breast for the reduction - they could have actually gotten everything -

Onco surgeon suggested BrCa counseling (family history), did that, tested with "no mutations detected" (a good piece of news at least).

Have had 2 months of waiting for sufficient healing from the breast reduction before additional imaging could be done-- . Diagnostic mammo scheduled for next Friday, breast MRI for the following Monday, and back to the onco surgeon that Wednesday. In the interim i've been reading, alternately calm and mildly (or more) freaked out....

I know DCIS is very "survivable" and that i'm lucky it's not worse. I think I understand the recurrence rates and know I'll want to do "something" to reduce them for me. I'm being consumed by 'if-then' thoughts: IF the images come back clean, what will I do? IF the images come back showing something, what will I do? If I have to do something, then what should it be? I want to go into the appointment with the surgeon with some pathway in mind for how i might proceed in various scenarios but am just not able to figure it out.. I'm not even sure the answers are different for any of the scenarios I'm looking at -- itjust seems that no matter what you start with in DCIS, you get the surgery/rads/hormone options, and haven't found much info on how people in my situation have been dealt with /decided what to do/ outcomes....

i know i'm rambling (sorry), any thoughts/comments that you think might help will be appreciated...
j

Comments

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #2
    Hi. I am just letting you
    Hi. I am just letting you know I sent you a private CSN email.
  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #3
    Hi
    Just take it one step at a time. Results first, then options will be put to you and the best process IF REQUIRED. I had cancer found in a breast reduction also, but a different type than yours. The reduction was done to match a mastectomy on the other side. Hence, double mastectomy. But again different circumstances and cancer. Everyone's is different. Good luck with your results and should you need us here keep posting, the ladies and gentlemen are very good at supporting and answering questions on this site.
  • j_self
    j_self Member Posts: 6
    #4
    cinnamonsmile said:

    Hi. I am just letting you
    Hi. I am just letting you know I sent you a private CSN email.

    thanks, cinnamonsmile
    tried to respond to you with private but not sure it went thru (computer seemed to be hanging up) I appreciate your comments and information. will try to send the email again.

    j
  • j_self
    j_self Member Posts: 6
    #5
    RozHopkins said:

    Hi
    Just take it one step at a time. Results first, then options will be put to you and the best process IF REQUIRED. I had cancer found in a breast reduction also, but a different type than yours. The reduction was done to match a mastectomy on the other side. Hence, double mastectomy. But again different circumstances and cancer. Everyone's is different. Good luck with your results and should you need us here keep posting, the ladies and gentlemen are very good at supporting and answering questions on this site.

    1 step at at time...
    Just take it one step at a time. Results first, then options will be put to you and the best process IF REQUIRED. I had cancer found in a breast reduction also, but a different type than yours. The reduction was done to match a mastectomy on the other side. Hence, double mastectomy. But again different circumstances and cancer. Everyone's is different. Good luck with your results and should you need us here keep posting, the ladies and gentlemen are very good at supporting and answering questions on this site.

    thanks, Roz. I do need the reminder not to get too far ahead of myself. i'm just trying to get my what-if questions together so once the options are laid out, i won't sit there just nodding my head ;-) haven't found many people or articles on "incidental" discoveries of breast cancer after breast reduction, so it's definitely hard to apply what i'm seeing about margins, van nyes etc etc etc to my situation.

    if i can ask, did you have radiation after the initial mastectomy? and are you on either tam or ai? how was your recovery from the surgeries?.
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #6
    j_self said:

    1 step at at time...
    Just take it one step at a time. Results first, then options will be put to you and the best process IF REQUIRED. I had cancer found in a breast reduction also, but a different type than yours. The reduction was done to match a mastectomy on the other side. Hence, double mastectomy. But again different circumstances and cancer. Everyone's is different. Good luck with your results and should you need us here keep posting, the ladies and gentlemen are very good at supporting and answering questions on this site.

    thanks, Roz. I do need the reminder not to get too far ahead of myself. i'm just trying to get my what-if questions together so once the options are laid out, i won't sit there just nodding my head ;-) haven't found many people or articles on "incidental" discoveries of breast cancer after breast reduction, so it's definitely hard to apply what i'm seeing about margins, van nyes etc etc etc to my situation.

    if i can ask, did you have radiation after the initial mastectomy? and are you on either tam or ai? how was your recovery from the surgeries?.

    Did you have cancer on the
    Did you have cancer on the other side?
  • j_self
    j_self Member Posts: 6
    #7
    cinnamonsmile said:

    Did you have cancer on the
    Did you have cancer on the other side?

    right breast only
    pathology showed cancer in right breast only; we'll see what imaging shows. With my instructions from mammo center, they said they review the results with us immediately.
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #8
    j_self said:

    right breast only
    pathology showed cancer in right breast only; we'll see what imaging shows. With my instructions from mammo center, they said they review the results with us immediately.

    This is hard
    This is hard I'm sure.Go in for a reduction and soon after found to have bc.I heard of a young lady who wanted breast implants.She had them.Soon after her breasts were red and sore.She was young. In her 20's.It was found she had breast cancer.She opted for a double masectomy and later reconstruction.

    I was dx with DCIS Stage 0.Non invasive.Prognosis is good but always a dcubt in the back of my mind.I listened to my doctors.I think they will lead us in the right direction but like someone said we are all different.Also something my doctor told me when I was first dx.

    I'm sure they are leaving some time for you to heal befors anything is decided and done.You must be in shock.

    Wishing you the best.

    Lynn Smith
  • j_self
    j_self Member Posts: 6
    #9
    Lynn Smith said:

    This is hard
    This is hard I'm sure.Go in for a reduction and soon after found to have bc.I heard of a young lady who wanted breast implants.She had them.Soon after her breasts were red and sore.She was young. In her 20's.It was found she had breast cancer.She opted for a double masectomy and later reconstruction.

    I was dx with DCIS Stage 0.Non invasive.Prognosis is good but always a dcubt in the back of my mind.I listened to my doctors.I think they will lead us in the right direction but like someone said we are all different.Also something my doctor told me when I was first dx.

    I'm sure they are leaving some time for you to heal befors anything is decided and done.You must be in shock.

    Wishing you the best.

    Lynn Smith

    more testing....
    thanks, Lynn

    had the mammo Friday and it showed some scattered microcalcifications; mammo actually wasn't as bad as i had been imagining given that I'm still somewhat swollen/healing from my surgery .radiologist and now breast surgeon recommending stereo biopsy - earliest i c an get it is next Tuesday. MRI yesterday, reports pending. BS doesn't want to see me till she has biopsy results, which i guess i understand but now have to wait again (and I'm not a very patient person: if nothing else this experience may change *that* :-)
  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #10
    Similar story different cancer
    Infiltrating Lobular often goes to both breasts.

    Found in one side, usually can't see this on mamos until the lump forms. Had mastectomy and breast reduction other side. They always send material taken away for tests even though nothing was thought to be going in the reduced breast. It came back with a lot of pre pre cancer cells and one active area........ Hence mastectomy on the other side one month later. I had four chemos no rads. Now just dealing with Tamoxifen, aches and pains, weight gain,, etc a lot less than a lot of ladies have had to deal with on this site. Take a partner or friend to appointment so you don't forget info given, write things down questions and answers.

    Don't forget my cancer is a different type. I am personally happy all was taken away as I would always be wondering........... Even then it could reoccur. But I feel I did the most I could to keep it at bay. Please tell us how you get on. You are the only one I have heard with similar circumstances and it is nice to talk to someone with same thing.
  • j_self
    j_self Member Posts: 6
    #11
    RozHopkins said:

    Similar story different cancer
    Infiltrating Lobular often goes to both breasts.

    Found in one side, usually can't see this on mamos until the lump forms. Had mastectomy and breast reduction other side. They always send material taken away for tests even though nothing was thought to be going in the reduced breast. It came back with a lot of pre pre cancer cells and one active area........ Hence mastectomy on the other side one month later. I had four chemos no rads. Now just dealing with Tamoxifen, aches and pains, weight gain,, etc a lot less than a lot of ladies have had to deal with on this site. Take a partner or friend to appointment so you don't forget info given, write things down questions and answers.

    Don't forget my cancer is a different type. I am personally happy all was taken away as I would always be wondering........... Even then it could reoccur. But I feel I did the most I could to keep it at bay. Please tell us how you get on. You are the only one I have heard with similar circumstances and it is nice to talk to someone with same thing.

    testing done, how to prepare for meeting with BS next week?
    hi all

    so I think the testing phase is finally over: the dx mammogram showed calcifications, which upon biopsy were negative/benign, and the MRI showed no evidence of invasive disease or additional DCIS in either breast. family history but BrCa negative. I am scheduled to meet with the BS next Tuesday and want to spend sometime over the Thanksgiving holiday getting my questions set.

    Would appreciate your collective wisdom in what I should be asking, given my unique path to diagnosis. It seems from what I've read that all the usual treatments (rads, HT, umx or bmx) still remain on the table. I am even considering watchful waiting at this point but that may just be wishful thinking...

    The key question of course will be best estimate of risk of recurrence without margins to assess. The Hopkins ask the expert says standard of care in this case would be mx. seems aggressive for .6 cm single focus without any additional evidence of disease... any thoughts/comments/suggestions?

    thanks so much
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #12
    j_self said:

    testing done, how to prepare for meeting with BS next week?
    hi all

    so I think the testing phase is finally over: the dx mammogram showed calcifications, which upon biopsy were negative/benign, and the MRI showed no evidence of invasive disease or additional DCIS in either breast. family history but BrCa negative. I am scheduled to meet with the BS next Tuesday and want to spend sometime over the Thanksgiving holiday getting my questions set.

    Would appreciate your collective wisdom in what I should be asking, given my unique path to diagnosis. It seems from what I've read that all the usual treatments (rads, HT, umx or bmx) still remain on the table. I am even considering watchful waiting at this point but that may just be wishful thinking...

    The key question of course will be best estimate of risk of recurrence without margins to assess. The Hopkins ask the expert says standard of care in this case would be mx. seems aggressive for .6 cm single focus without any additional evidence of disease... any thoughts/comments/suggestions?

    thanks so much

    Since you are grade 3 with
    Since you are grade 3 with comedo necrosis, you have the most aggressive type of DCIS, but in a small amount. Did the MRI find any other suspicious areas? I am not sure if I missed the results on a posting or not.

    You are right that standard of treatment is lumpectomy with clean margins and/or rads or a UMX or BMX with clean margins. Please remember that even though most with removal of the cancerous breast, if clean margins are not met, one still may need rads.

    If one has a BMX for DCIS, no hormone therapy would be standard. If a person has a UMX for DCIS, some still receive hormone therapy.

    I would talk to the breast surgeon and get all the information you can. I can why it is so much harder for to decided because the DCIS finding was accidental and you don't know if you have clean margins.
  • Letgonletgodb_1
    Letgonletgodb_1 Member Posts: 8
    #13
    cinnamonsmile said:

    Since you are grade 3 with
    Since you are grade 3 with comedo necrosis, you have the most aggressive type of DCIS, but in a small amount. Did the MRI find any other suspicious areas? I am not sure if I missed the results on a posting or not.

    You are right that standard of treatment is lumpectomy with clean margins and/or rads or a UMX or BMX with clean margins. Please remember that even though most with removal of the cancerous breast, if clean margins are not met, one still may need rads.

    If one has a BMX for DCIS, no hormone therapy would be standard. If a person has a UMX for DCIS, some still receive hormone therapy.

    I would talk to the breast surgeon and get all the information you can. I can why it is so much harder for to decided because the DCIS finding was accidental and you don't know if you have clean margins.

    Mine was also found during
    Mine was also found during my breast reduction. I had 2 surgeries after my reduction to try to find the left over small amount of cancer. After my first cancer surgery my surgeon was going after .5mm spot that was left behind but decided to do a scraping over that area to double check and actually found 2 more small spots she didnt know even existed. I decided to just go ahead with a full mastectomy. But mine genetic test came back positive so that made a little bit of a difference also. I take tamoxifen also and did chemo. Mine was stage IIb grade 2. Good luck and let us know what u decide..

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