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DCIS recurrence after a mastectomy

Maha202
Maha202 Member Posts: 3

Hello !

I had a bilateral mastectomy 2 years ago when I was diagnosed with high grade DCIS. I lost my nipple so all that was left was the skin and I had immediate reconstruction.

I am now waiting for the final pathology report following on my a lumpectomy. Never thought I’d have to have a lumpectomy after a mastectomy! My doctor believes it is DCIS again.

Has anyone else been though this? Feeling so lost and confused. What is the usual treatment in this case? Will I need to go down the oncology route now?

Thank you in advance for any feedback!

Comments

  • minustwo
    minustwo Member Posts: 13,076

    Maha - I too thought if you had a complete mastectomy, there should have been no breast tissue left. If the surgeon got it all the first time, did your report say clean margins?

    I did have a local recurrence, but it was in a lymph node up by my collar bone. It was likely a rogue cell that escaped since all of my pathology, including SNB, was clear. Only now it was IDC instead of DCIS.

    Like you, after my BMX I didn't have any other treatment. With the recurrence 2 years later, they also diagnosed HER2+, which they don't often test with DCIS. I had neoadjuvant chemo - unfortunately without a complete response. So after surgery I had a different set of chemo treatments. Then radiation & Herceptin for the balance of a year.

    I would suggest you meet with an MO (medical oncologist) to discuss your results - not just a surgeon.

  • Maha,

    So sorry you are going through this.

    Unfortunately, it does happen. About 1%-2% of women who have a MX for DCIS do end up with a local recurrence. That's a small percentage, but when you consider that about 65,000 women in North America are diagnosed with DCIS every year, about a 1/3 of them have a MX, that works out to a lot of women.

    I believe that if your new diagnosis is pure Stage 0 DCIS and not invasive cancer, then the surgery may be all the treatment necessary, although perhaps radiation and/or hormone therapy will be recommended. Not sure about that and I agree with MinusTwo that it would be advisable to speak to a Medical Oncologist.

    Here are some other threads where this has been discussed:

    Topic: Has anyone had Reoccurance of DCIS after a Mastectomy

    .

    Topic: recurrence after DCIS mastectomy

    .

    Topic: Recurrence after bilat mastectomy? This third thread isn't specific to DCIS but a lot of women who had DCIS initially and had a BMX have posted here.

  • Maha202
    Maha202 Member Posts: 3

    thank you so much for your replies. So sorry it took time for me to come back! I received my final report yesterday - High nuclear grade DCIS again. Unfortunately she wasn’t able to get clear margins. Arranging appointments with oncologists for the New Year. Let’s see what 2020 has planned for me!

    Wishing you both all the best health and happiness. Thank you again for taking the time to reply xx

  • sierramtngirl
    sierramtngirl Member Posts: 1

    Hi Maha202- How was the additional DCIS found? Do they think it was missed the first time around? Please do keep us updated. Thinking of you and I'm so sorry you're dealing with this again.

    Hugs

  • Maha202
    Maha202 Member Posts: 3

    hi!

    I had a small lump that formed close to the scar. Initially they said it was a fat deposit or vein. It doubled in size over 6 months so they investigated further.

    Honestly they are all scratching their heads as to how this has happened. Now no one can decide if I do “just another surgery” or radiation as well. Baffles me how blasé surgeons can be about going under the knife.

    Thank you for your well wishes 😘 will keep you posted

  • blah333
    blah333 Member Posts: 68

    just curious, how do you get DCIS again when there are no longer any ducts left?

    I have felt a lump recently 3/4" below my scar and am paranoid it is recurrence just after 2 years since my mastectomy. I see the doctor later this week. I did read women who have 6cm+ greater are more likely to have a recurrence.

    But that stinks, that breast cancer risk calculator informed me there's a 1% chance of getting cancer at age 35 (I did), now if it's a 1-2% chance of DCIS local recurrence then wow what odds. I have also had swollen nodes since my surgery and am paranoid it is spread.. double mastectomy for DCIS is not "supposed" to lead to cancer again this soon wtf. Just makes me feel like surgeons are incompetent. Maybe I should have had radiation with the mastectomy, though I know that is not as common and I wanted mastectomy to avoid radiation. This feels so punishing and like being shit on.

    Curious what the course of action is if a lump near mastectomy scar turns out to be cancer again. Because of mastectomy they can't do a sentinel node biopsy, I am also scared of having to have more nodes taken. Stinks having to wait for information and appointments..... up late new years eve on this forum, depressing

  • minustwo
    minustwo Member Posts: 13,076

    Blah - Waiting is horrible but take a deep breath. Swollen lymph nodes can be caused by so many things. I see you already have a doc appointment so try not to worry. I sent you the LE link on another thread where you posted. Maybe ask you doc about seeing a trained, certified LE therapist.

    I had a BMX and reconstruction with no other treatment. It's my understanding that they do NOT do rads after a BMX. I did have lots of imaging that showed everything was clear. Two years later, I had what was called a "local recurrence" up by my collar bone. In my case there was no breast tissue left (although that's a possibility) and my surgeon got clean margins. She was horrified. I love my surgeon and believe she did the best job. The recurrence was not DCIS (because of course no ducts), but now IDC. Apparently caused by a rogue micro cell that migrated before the surgeon could get it.

    Hope what your facing is scar tissue or some other benign issue. Please know that we're waiting with you.

  • "just curious, how do you get DCIS again when there are no longer any ducts left?"

    Ah, there can still be ductal tissue left against the skin or the chest wall, even after a MX. And this is how a few cells of DCIS could remain to cause a recurrence, and how those few cells, if not caught soon enough, can turn into an invasive recurrence.

    Think of your breast as being like a bowl, and inside is spaghetti - well actually, bucatini, which is hollow spaghetti - and sauce. The bucatini are the milk ducts and the sauce is the breast tissue. Anything that is in the middle of the hollow bucatini isn't going to be 'escaping' into the sauce or slopping outside of the the bowl (as the sauce might do) but the bucatini is a tangled mess that fills the whole bowl and goes right up against the sides and bottom of the bowl, and sometimes even sticks to the sides of the bowl - just like the milk ducts in a breast against the chest wall and the skin. A bit of a strange example a fairly accurate representation.

    image

  • lastar
    lastar Member Posts: 551

    My BS said that he has seen imaging of microscopic ducts in the skin layer. He said it changed his entire view on DCIS and thinks this may contribute to the recurrence rate after surgery.