Just upgraded from ADH to DCIS and no clear margins yet

Kimmy_nl · April 2018

Hi everyone I’m new to this group. I’m 45 years old and just recently dx with low grade DCIS. I had a mammogram back in October 2017 which showed calcifications in my left breast, so I did the core biopsy in January and the radiologist told me he suspected it is was DCIS, but the path report came back with ADH and a small intraductal papilloma. I had a wire guided lumpectomy April 3, and the results came back with ADH and an overlapping area of low grade DCIS but the surgeon said he didn’t get clear margins so I’m supposed to go back for the second lumpectomy in 3 weeks and I have to see the radiology oncologist. I asked the surgeon about his recommendation for lumpectomy or mastectomy and he said it was personal choice and up to me. I’m wondering if anyone else on here with a similar dx opted for lumpectomy or mastectomy? Or do you think mastectomy is over treatment

LisaK12 · April 2018

I did two lumpectomies and neither one had clear margins so ultimately I got a bilateral mastectomy (and sentinel node biopsy) with immediate, direct-to-implant reconstruction, with silicone implants placed pre-pectorally using Alloderm. Honestly, the recovery has not been bad at all. Full range of motion in my arms immediately after surgery. The sentinel node was clear and nothing invasive showed up on the pathology report, just DCIS (plus ADH in both breasts), and they got clear margins. Fortunately no other treatment is necessary for me. I am two and a half weeks post-surgery and am still sleeping more than usual, I am still wearing a sports bra 24/7, and my incisions are still healing, but otherwise life is mostly back to normal now that my drains are out. I have been out shopping and out to eat a few times, I am not on any medications and am able to drive, etc.

Obviously the choice is yours. I suspect that the choice is either (1) lumpectomy plus radiation, or (2) mastectomy -- and that if they still don't get clear margins on the lumpectomy then they may recommend a mastectomy as a next step.

Good luck with whatever you decide.

Kimmy_nl · April 2018

Hi LisaK12,

Glad to hear your doing well and having a speedy recovery . I’m leaning towards mastectomy. My father died of aggressive liver cancer and I’m terrified of a reoccurrence. I think if I leave the breast I will never have any peace of mind.

Rrobin0200 · April 2018

Like Lisa, I too opted for a BMX for my DCIS. Immediate, Direct implant at the same time. Recovery wasn’t bad at all. Once the drains were out (2.5 weeks), I was back to my normal self. At 6 weeks post op, I was back st the gym.

Couldn’t find peace of mind with a lumpectomy, so a BMX was essentially the only way to go.

Well wishes sent your way!

Sandy71 · April 2018

I had to have 2 lumpectomies to get all of my DCIS. I was very upset about the thought of having to have another surgery thinking I would be deformed and that the scaring would be bad from cutting through the old incision. I have small breasts A/almost B and had previous excisional biopsy 4 years ago on same breast so my breast was slightly smaller already. I was happy to find that there wasn’t much asymmetry after second surgery and second surgery recovery was easier than first.

I was lucky that they got everything on second surgery and that the lesion was small. My genetic testing was negative so I was happy to have lumpectomies. If I was positive I was planning on b/l mastectomies. I will meet with RO to decide if I need rads.

I think the treatment for DCIS is variable based on size of lesion, grade of DCIS, patient age and personal preference and tolerance for risk, uncertainty or whatever........ For me personally I want to keep my breast. I am highly estrogen receptor + so will most likely take Tamoxifen so I feel like that is something I can to do to prevent recurrence while keeping my breasts. Not everyone has that option. I think you need to get as much information as you can and the trust your gut.

Good luck with whatever you decide

SiameseX2 · May 2018

Hi newfie,

Sorry you have to be here! I was 41 when stereotactic biopsy found DCIS last Spring. I had my lumpectomy, followed by radiation and tamoxifen. Clear margins except for underside because it was very close to my chest muscle. They took the fascia off my muscle in this case - more surgeries would not benefit me.

A second lumpectomy is not that uncommon. It depends on your tolerance for surgery and worrying about things, etc. I think they will do three lumpectomies before they strongly suggest mastectomy. The second procedure will likely be easier.

Have you had a breast MRI? What were the results?

Hopefully, you trust your doctors. If they aren't strongly steering you in the direction of mastectomy, I would think about all of your options. You can only choose lumpectomy before resorting to mastectomy, not the other way around.

SiameseX2

Kimmy_nl · May 2018

Thanks for all your journeys everyone! It is such a comfort to have others to talk to who have gone through similar diagnoses.

I’ve decided to opt for the second lumpectomy. I’m scheduled for surgery again Tuesday May 8. I’m 4 weeks out from my last surgery, but the one good thing is they don’t need to put the wire in this time to guide them. I’ll give it one more try. Where I live they don’t do immediate reconstruction during mastectomy, and I would have to wait 2 years for reconstruction.

I haven’t met with the radiology oncologist yet, I’m guessing that will be after surgery anyway. I need to get more information from my pathology report as well. All I got from the surgeon was it was low grade DCIS, I don’t know how much or it was ER+/PR+ or much else to be honest. I was in shock really when he told me it was upgraded and I needed more surgery. But fingers crossed they get clean margins this time

Just upgraded from ADH to DCIS and no clear margins yet

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