DCIS Re-excision With a Close Margin

Nicole11

Hi everyone. I've been following these discussion boards for a couple of months now. I guess I was hoping to know the full scope of my situation before joining, but that keeps changing. So much of what I read has been very helpful and I like the idea of being a part of a community of people who understand what this "process" is like. A little bit about me- I'm 40 years old, and after having my first routine mammogram in January 2019 and subsequent biopsy, I was diagnosed with DCIS in my right breast (high grade, with comedo necrosis, hormone receptor positive). A follow-up MRI revealed two additional suspicious areas: another in the right breast, and one in the left breast. After MRI guided biopsies, both of those areas thankfully turned out to be benign (PASH). Genetic testing revealed that I have a genetic mutation of the ATM gene (moderate risk). My breast surgeon recommended a lumpectomy followed by radiation and hormone therapy. I had a lumpectomy earlier this month which removed 5.2cm of DCIS. The pathology report came back as pure DCIS but a close margin on one side of 1mm. My case went up before a tumor board and they recommended a re-excision based on my age and grade of DCIS. I had a re-excision lumpectomy earlier this week with the goal of obtaining adequate margins. I just got the call this morning from my surgeon that all margins are clear except for one single duct containing DCIS measuring 1mm in size and within 1mm of the new re-excision margin. I am disappointed and confused. My surgeon is recommending that I go straight to radiation instead of having additional surgery because of the tiny residual amount found that the radiation will likely address, but is bringing my case before the tumor board tomorrow to make sure everyone agrees. Has anyone out there had a similar situation? I certainly don't want to take any changes, but also can't stand the thought of yet another surgery. Thanks in advance for any advice you may have.

Palesa2018

Hi, I also had extensive dcis and later found some IDC. I opted for a double mx. However after that first surgery the margins were too close on the DCIS. And so I went for a re-excision. Margins were clear. I then followed with Radiation post the mastectomy because of the sheer amount of DCIS. Surgery is still first prize, radiation just additional insurance that you can ever only do once in the same area.

My advise is to take a long term view. Whatever that is for you.

Take care and wish you all the best. I also turn 40 soon.

Ingerp

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

Nicole11

Thanks for sharing some of your experience, Palesa2018. I'm sorry to hear you had to undergo multiple surgeries and I'm glad you're on the other side of them. I agree that taking the long-term view is best and I'm hoping the answer becomes clearer. I have my follow-up appointment next week to discuss things in more detail with my oncologist. It's strange being 40 with this, isn't it? On one hand this makes me feel older because it's rare for women in our age group to have this, but on the other hand I feel younger because my doctors keep emphasizing the "young age" at diagnosis. It's a little disorientating! Take care and I wish you the best too.

Nicole11

I appreciate your advice, Ingerp. I actually didn't realize the re-excision rate was that high. I guess I'm not as unlucky as I thought ; ) I think "squirelly" is a great way to describe DCIS. It's concerning to think that if they had only taken out a few more millimeters on the first surgery, they would've gotten clear margins and we never would've known this new little spot was there. I guess that's what radiation is for though. The board met yesterday and my doctor said she would only call me if the board disagreed with her. She didn't call. We will talk in more detail next week at my follow-up and I will have a better understanding of what was discussed. I feel lucky that multiple people are weighing in on this, it puts my mind at ease a little. I plan to take your advice to trust the experts. Thanks again.

LisaK12

I've been there. My DCIS did not initially show up on mammogram, ultrasound, or MRI. Because I had bleeding from the left nipple I went for another mammogram and ultrasound 8 months later and the technician really had to fight to find anything that might explain the bleeding. Finally found something that looked like it might be a microcalcification, but turned out not to be -- biopsy came back positive for DCIS. I had two lumpectomies with unclear margins -- BS recommended unilateral mastectomy. After a lot of research I chose to have a double because I no longer had confidence in current imaging technologies, and also because I wanted to be symmetrical. Pathology results post-mastectomy showed DCIS was scattered throughout all four quadrants of my left breast and I had LCIS in the right. Mastectomy was the right decision for me, as the peace of mind is worth it. I was fortunate to be a candidate for immediate, direct-to-implant reconstruction -- all at the same time as my BMx. No tissue expanders -- it was "one and done." Recovery was smooth and six weeks later I was on a transcontinental flight with DH, toasting to being cancer-free. Good luck to you. Take your time to make any decisions, and do your homework. This site is invaluable!

julied1962

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...

sagelady

wow Julie... your a rockstar !! Your on the other side of the hill now.... you got this now. Thanks for sharing , you are an inspiration !

Nicole11

Hi LisaK12, thanks so much for sharing your story. I agree that current imaging technologies are certainly lacking. Wow, that must've been so frustrating for you to have multiple tests show nothing and then have the pathology results show diffuse DCIS. This really makes me think. You definitely made the right decision and I'm so happy for you that you had a smooth recovery and now have total peace of mind. The board I mentioned in a previous post agreed with my BS that I'm fine to go to radiation without more surgery since the DCIS close to the margin was only single duct. However, she said she'd of course support me if my decision is to have a mastectomy. I have a lot of thinking to do.

Nicole11

Hey Julied1962, thanks for your reply and for sharing your experience. I totally agree the second lumpectomy was tougher. The appearance of my breast is a little worse for the wear after too (I don't have large breasts either). I appreciate your honesty around the DIEP surgery. I'm sorry it's been rough but I'm glad the surgery itself is behind you and that you're on the road to recovery. You made the right decision and you're absolutely going to be happy with the results at the end of this. Plastic surgeons can do amazing things these days. Plus (and most importantly) you will have peace of mind. I wish you the best.

alto

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.

SimoneRC

Hi Nicole11!

I am a fellow ATM’er. Have you met with a genetic oncologist yet? I found it very educational and helpful. With the mutation there are additional data points that you may find helpful in navigating your breast cancer treatment and additional health areas! It was probably one of the most important medical visits I have had!

Wishing you all the best!

Davis1

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.

Davis1

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.

Nicole11

Alto and Davis, thank you for your posts and I'm sorry for everything you've been through so far. There seem to be many similar stories of re-excisions with more disease discovered that never showed up on MRI. I also wish there was a better way to see what's going on in there. So frustrating. If I go with a mastectomy, I feel like I just had two unnecessary surgeries only to be back at square one. I know that's not the right attitude though! I guess it's all just part of the learning process about our particular case and I need to think of it as just a detour, like you said, Alto. Thank you for the positivity and I'm glad your recovery has been relatively smooth.

Nicole11

Hi SimoneRC, it's nice to hear from a fellow ATM'er! I have met with a genetic counselor at the facility where I got my first opinion. She was very knowledgeable and explained what is known about my specific mutation, because as you know there are many different mutations within the umbrella of ATM. She said mine was not associated with potential issues with radiation (some are) and the current estimate is that I have a 20-30% risk of another breast cancer developing at some point in my lifetime. She said this gene is rare and there are not a lot of studies out there, and that preventative mastectomy is not currently the recommendation for people who have this mutation per the guidelines, though it's an option for me. I am now meeting with another genetic counselor later this week (at my second opinion facility- the one I decided to go with) at the request of my radiation oncologist who I just met with today for an informational meeting. The rad onc thought it would be helpful for me to have a second opinion on my mutation and gather more information before moving forward with radiation. I have more questions to ask this time, so I welcome another opinion. I asked the rad onc the same question I asked my breast surgeon: what would you do? She said she would likely have a mastectomy because she is more risk adverse. The breast surgeon said she would not. Ugh! I guess this just reinforces how this is such an individual and personal choice. If there's anything you'd like to share about the information you received at your appointment or additional questions I should ask I'd really appreciate it. Thanks again for reaching out!

SimoneRC

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

SimoneRC

Hi Nicole11!

I hope you are doing ok! I was wondering if you met with the second genetic counselor? If so, would you mind sharing any take aways from the appointment?

All the best.

Nicole11

Hello SimoneRC! I'm sorry for the delay. Sure, the second genetic counselor went over relevant studies involving ATM mutations and emphasized how rare the mutation is (an estimated 1% of the population) and that there are just not a lot of studies out there which is why there's such a huge range of increased risk of breast cancer (She said the risk could be 10% or less or 40% or more or anywhere in between with this gene). They just don't know at this point and should know more in the next 3 to 5 years when ongoing studies are completed. It's not nearly as well studied as BRCA and that's why the guidelines currently don't recommend preventative surgery, but that is of course an option that a lot of women choose. She said there is a specific mutation under the general ATM gene umbrella that carries a higher risk than all of the others, but that is not the mutation that I have. She said the thought that ATM mutation carriers could be harmed by radiation stems from the fact that somebody with two ATM mutations (that means the person would have the rare disease ataxia telangiectasia) would likely be harmed by radiation due to their cells inability to regenerate properly. But for a carrier of one mutation, this is a question that needs further research and there are not yet data from any clinical studies to definitively answer the question. With this mutation, she said there is currently only data to show that there is a moderate increased risk of breast cancer and also a slight increased risk of pancreatic cancer, but there is no other data showing a higher risk of other cancers at this point. As for me, I decided to move ahead with radiation as there is just not enough data out there right now about this for me to move ahead with a surgery I may not need (even though I totally understand why some would choose this route for peace of mind). I also have no family history of related cancers, which plays a role in my risk as well. I struggled with the decision, but ultimately I feel this is the right one for me at this point in time. I'll let you know how the radiation goes if you're interested. I just finished my 4th treatment today of 21. I hope you're doing great.

SimoneRC

Hi Nicole11!

Thanks so much for circling back! It sounds like you had a super useful meeting and made the absolute best decision for you. We are a small group and there is obviously so much to learn.

I hope the rest of your radiation treatments go ok and that you have a very long, very healthy and very happy life!!!

Hopefully all of us ATM’ers can keep each other posted over time.

All the best

SimoneRC

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

Thanks again

Nicole11

Hi SimoneRC,

Thank you for the kind words! I wish the same for you. The specific mutation the genetic counselor sited as high risk was the c.7271T>G variant. This data is from the National Comprehensive Cancer Network (NCCN) which states that carriers of this missense mutation have up to a 69% chance of developing B.C. by age 70. I have the full NCCN guidelines (just one page) if you'd like me to send it to you. It would definitely be nice for those of us with the ATM mutation to keep each other posted. I had my 9th radiation treatment today and so far so good but I'm looking forward to the finish line.

SimoneRC

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

Nicole11,

I came across your question doing a search, just a few hours after my follow up post op appointment. My diagnosis is extensive DCIS, 7-8cm on mammogram, turned into 10.5cm. I agreed to single MX with expander placement under pec muscle. Today I learned about the margins as well, after mastectomy! The surgeon is saying that there's not much left to remove except for the skin, he doesn't believe it should be done, plus it means no implants for me. My case is also going to the panel discussion, most likely I will be doing radiation therapy as well.

So here I am, stage 0 with mastectomy and radiation therapy. Was encouraging to see I am not alone.

TB90

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

JulieSim

Thank you for your response TB90,

I did ask about the risks, I was not provided with numbers, was just told they would be fairly low. I am being treated in Princess Margaret Hospital in Toronto, even though I am a very sceptical person to begin with, in particular when it comes to healthcare, I do have a lot of trust in PMH physicians, looks like i am in the good hands.

If you don't mind me asking, did you choose some type of reconstruction? Did radiation therapy affect it? I do need to do my homework, but of course there is some fear of SE related to reconstruction part as well.

Thank you again.

Julie

TB90

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

JulieSim

Thank you again for your detailed response TB90! I will prepare my questions for radiation oncologist and PS and will hopefully figure everything out.

Nicole11

Hi SimoneRC, I scanned the guidelines but I don't see a way to post them here (the insert image function doesn't allow me to do it and I don't see a document attachment option). If there's any easy way to do it, let me know. Otherwise, just PM me your email and I'll send it to you! Thanks for the kind words. 11 treatments down and side effects are as expected and manageable. Happy almost summer to you too!

Nicole11

Hi Julie, I'm so sorry to hear that the margins weren't clear after mx. That is beyond frustrating. I know how it feels to think you're through the woods and then be thrown a curve ball. What was the extent of your margins? I'm glad a tumor board is looking at your case. I found that *somewhat* comforting in my case to know multiple experts were weighing in. If you have not already done so, it might be a good idea to get a second opinion. It arms you with more knowledge and may provide you with more options. I was surprised by the difference in my experiences with the two opinions I received. Even if they say the same thing, it just makes you that much more secure with your treatment path. I only know that radiation limits reconstructive options before future reconstruction, but I don't know anything about after you've already had some reconstruction done with the tissue expanders. Trust the advice of your care team- they are the experts. Please keep us posted and know we're here for you.

JulieSim

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.