DCIS Re-excision With a Close Margin

You probably know re-excision following lumpectomy for DCIS is common—I’ve read 25-40% of the time. My BS described DCIS as “squirrelly”—you can’t see it or feel it and of course the surgeon is trying to minimize the amount of tissue taken out. *If it were me*, I’d probably go for a third surgery if that’s what the board recommends. It’s a simple surgery with a quick recovery. That said, if there’s general agreement that you can proceed with rads, then trust the doctors. Whatever happens, trust the decision and don’t look back

I had similar situation. DCIS 2cm high grade, comedo necrosis. First lumpectomy was so easy! But, margins were <1m on 4 sides. Second lumpectomy was a bit rougher for some reason (maybe cuz 2 surgeries within 3 weeks?) Again, <1m but only on one side. Dr said a third lumpectomy would probably work, BUT, my breast was already completely messed up, wasn't very big to start and about a third of it was now basically gone. So I was looking at reconstruction for sure.

That helped with my decision to do mastectomy with immediate reconstruction (DIEP). And researching that, I went with double BMX because DIEP can only be done once, and I figured I'd probably need some touch up surgery on other breast at some point anyway!

The DIEP surgery was no joke though. Rough recovery, still going thru it at 5 weeks, and still very sore & weak and some wound complications. When they tell you 6-8 weeks recovery, count on the 8 weeks and don't make any plans! I'll be looking at more like 10 weeks with the wound complications. and still touch up surgery(s) to come. But, I'm confident I made the right decision and will someday be happy with how my body looks again...

I had nearly clear margins after my first surgery. Just one cell too close to the margin. The second surgery was supposed to take care of things, but those margins weren't clear either. They'd gone pretty deep into my breast already and did not think radiation would be enough for me anymore, so I had to have a mastectomy. They found even more DCIS at the original site and away from the original site. The MRI did not show any of this.

I was also dealing with Paget's, which may explain some of the occult nature of my DCIS.

On the pain front, mastectomy has not been too bad. Longer recovery, exhaustion, discomfort, tightness, and worry in those first few weeks, sure. A few months down the road: annoying sometimes, but definitely workable.

So I think these detours are common, but you can get to a good place, whatever path you're on.

I wish there were better ways to see what's going on in there...and how one will respond to various treatments...that would make these decisions and this process easier! If only...

Anyway, it is a pain when you hit a bump in the road. I'm sorry you are dealing with this, and hope you get to move forward soon.

Yes I had a tumor 7 x7 did have lumpectomy of the left breast in February. My margins were clear but less than 1 mm had to have a Re excision done but now came back positive for more dcis and I also have found another lump since the surgery in the same breast my doctor is recommending a mastectomy of my left breast saving the skin and nipple for reconstruction.

But I now have found 2 pea size lumps in the right breast since I had the surgery 3 months ago. I know they say this type of cancer is non invasive but this stuff seems very invasive to me but.

Hi Nicole11,

I sent you a private message. My gut feeling, I am not a doctor, for all of us ATM’ers.... if the radiation oncologist says she would not do it, I would listen more to her than the surgeon. The surgeon’s area of expertise is surgery. The RO’s area of expertise is radiation. I would not ask my surgeon for his expert opinion on radiation treatment. My RO would not radiate me due to the gene and a family member with the gene who had severe issues caused by the radiation. I could have the lumpectomy with 6 month alternating MRI and Mammogram (new clinical trial) or mastectomy. I chose bilateral mastectomy.

It’s a tough decision. Talk to lots of smart doctors and trust your gut. This gene thing makes the whole thing a bigger worry! Hang in there and please keep us posted

Also, do you remember which specific mutation she sited as high risk?

Thanks again

Hi Nicole11!

9 down. 12 to go. You are almost half way there! Hopefully all is going ok with the radiation treatments!

I would love it if you could forward on the NCCN guidelines! If you cannot post here, I am happy to PM my email address to you. My test was done by Invitae and it just names deletions of two specific Exons. Will be in touch with the Genetic Onc with the information to see if she can translate! My family’s ATM Deletion certainly has turned out to be a bad one!

Thanks so much! Happy almost summer!

JulieSim: Five years ago I had a microscopic positive posterior margin following mx. I researched this extensively. Equal support for radiation and nothing further. Made me crazy. Chances of recurrence went from 1 to 2% to 13%. My breast surgeon felt that was a better option to risks if radiation. I still chose radiation and reduced risk to 7.5%. These numbers are estimations of course. I did extremely well with radiation and have no SE's. So no regrets thus far. My decision came down to my tolerance of risk factors. I had to reduce any chance of recurrence. But there is no best practise here. Just your preference. Radiation now means less options later should a recurrence occur. And 13% is still a small chance. Should you choose rads, ensure you have a RO with tons of experience or the risks of radiation could far outweigh the benefits. Overall, the prognosis is excellent either way. I feel great and worry much less. You will be there regardless of your treatment. Ask lots of questions. And decide based upon your needs. All the best. And know you are not alone

Julie, I did not even consider reconstruction. I was told by my breast surgeon that there would be a bit of a delay if we had to coordinate with another specialist. I said no automatically. I just wanted to get this over with and back to my active self. I have never regretted my choice despite the little thought I put into it. But radiation would be a very serious consideration if reconstruction is desired. If that is important to you, then you have to look into the consequences. There is so much to consider. But take your time, unlike me, and make an informed and personal decision. Like I said, the research does not strongly recommend one path over the other. All paths lead to a long future for you. So decide what makes you optimistic and whole. That cannot be defined by anyone but you

Thank you for your response Nicole,

My report says margins positive for DCIS, lateral and anterior, focal.

I am glad I came across other patients wearing same shoes, to me it's in a way more reassuring than getting 2nd opinion. Usually patients are coming to my hospital for 2nd opinion, so I am not sure if I will be going anywhere else. Will wait and see what radiation oncologist tells me.

As of my expanders, I was trying to opt for an easier procedure with good outcome, and I am just afraid of new bumps down the road and more procedures and surgeries and issues. I have time to think and if I am not happy, I will probably end up going flat. Will see.