Overwhelmed

VeeHow

Diagnosed yesterday with DCIS Stage 0 but the margin around my lumpectomy was not clear. My surgeon would like to perform a second lumpectomy to enlarge the margins and radiation. She said she would need to take some skin during the lumpectomy. Today I go for an ultrasound for a lump I just found. Tomorrow I meet my oncology team. I am already considering getting a second opinion at some point. Questions are running through my head, then I try to find out more about my specific dx and I have more questions. I have even wondered if it might be worth double mastectomies to take away most of the worry and waiting. Your thought and experiences??

Ingerp

I needed a re-excision after my left-side lumpectomy. My understanding is it's fairly common because DCIS is, as my BS said, "squirrelly." Can't identify it visually, and they're trying to preserve breast material. On my right I gave him specific instructions to "go big." :-) The re-excision was no big deal--they're such simple surgeries, and I always kinda like the month or so of downtime while you heal when you don't have to think about anything else. FWIW, I've never considered getting a second opinion. I trust my medical team (plus there's so much info available I knew what treatment would be recommended before ever meeting with an RO or MO).

Beesie

Being thrown into this whole new world, with so many unknowns, is scary, isn't it?

Here's the good news, relatively speaking. You had an excisional biopsy for ADH. Clear margins is not the goal of an excisional biopsy, and if the expectation was set for you that you would get clear margins, that was wrong. With an excisional biopsy, the surgeon is looking to remove the suspicious tissue so that the pathologist can analyze more of it, but because 80% of excisional biopsies don't find anything more than the original high risk condition, most surgeons are careful to not remove too much breast tissue or any more breast tissue than is absolutely necessary.

You unfortunately fell in the 20% who were found to have something more serious show up in your excisional biopsy. The good news, again, relatively speaking, is that what was found was DCIS, which is a non-invasive condition. In all my time on this site, while I've seen many situations where an excisional biopsy for ADH found DCIS, I can only think of a couple of situations where a follow-up lumpectomy was not required. In fact off the top of my head I can only remember one case, but I'm sure that over the years there have been others. So requiring more surgery after the excisional biopsy, if DCIS or invasive cancer is found, is the norm not the exception.

And, as Ingerp mentioned, even for those who already have a diagnosis of DCIS from the needle biopsy, about 20% - 30% of DCIS lumpectomies don't end up with clear margins. Unlike invasive cancer that forms in a lump, which is usually quite easily removed with clear margins, DCIS is contained within the milk ducts of the breast. Therefore as the cells multiply, rather than form a lump, the cells tend to spread out within the narrow duct. Sometimes the tail ends of this spread is so microscopic that it's impossible to see on any imaging. This is why it's so difficult to get clear margins with DCIS surgery.

In my case, I had two areas of calcifications. My needle biopsy was only able to reach one area, and that turned out to be ADH. So like you, I had an excisional biopsy. The surgeon removed both areas of calcifications, and both turned out to be full of high grade DCIS. Within one area, there was also a microinvasion of invasive cancer. That meant that my diagnosis was Stage I so I would have to go back for another surgery to have my lymph nodes checked (which is not necessary with Stage 0 DCIS). But on top of that, it turned out that there wasn't a single clear margin anywhere around either of the two removed areas of DCIS. It wasn't that my surgeon was bad; it was that there was a lot of microscopic DCIS in there.

What happened in my case is that I then had an MRI. It showed that my breast was full of DCIS - the main areas had been visible on my mammogram, but the rest was only visible on the MRI. So I ended up needing to have not just the sentinel node biopsy but also a MX. For you, if you have not had one, I would recommend an MRI. If you've already had one and the suspicious area looks contained, then going ahead with a re-excision lumpectomy should do the trick and achieve wide margins. But if you haven't had one, an MRI might help you decide what to do from here.

As for a BMX, that's a big decision. If your new lump is cancer, that might make the decision for you. But if it's not - it could just be a cyst or something like that - then my question is whether a BMX is something that you were already thinking about. Some women know that if they are diagnosed with DCIS or invasive cancer, they will have a BMX - no question about it. Maybe it's because they've had breast issues and many biopsies over many years, or maybe because of family history, or maybe because they've had genetic testing and know that they are high risk. But if a BMX is not something you thought about before, don't go there out of fear or as a quick reaction to your current situation. There are lots of reasons to decide to have a BMX but fear is not a good reason because fear is situational and it fades over time.

Have you seen this thread?

Topic: lumpectomy vs mastectomy - why did you choose your route?

Take a look at my post on the first page, with the list of considerations for those making the lumpectomy vs mastectomy vs. bilateral mastectomy decision. It's not going to tell you what to do, but might help you decide what the right decision is for you.

As for a second opinion, I'd recommend that you wait until you have your appointment tomorrow to decide. I did go for a second opinion, but that was because my first surgeon recommended a MX after my excisional biopsy and I really really didn't want to have a MX. My second opinion surgeon was the one who ordered the MRI, and once the MRI results were in, although my second surgeon was willing to attempt a re-excision if that was what I really wanted, he was skeptical that he could achieve the clear margins. So that convinced me to go straight to the MX. If you like and trust the team when you meet with them tomorrow, and if they communicate clearly about your diagnosis and discuss all your options, then you might feel perfectly comfortable with them and decide that a second opinion isn't necessary. But if you aren't comfortable with them or with what they tell you, then a second opinion might be advisable.

Let us know how it goes tomorrow.

VeeHow

Thank you for your response. I have very dense breast tissue. They were only able to see the 3 DH (only 1 Atypical) with an MRI. They also used it for a 3 VAB and another before surgery to place guidance wires. My surgeon was clear she tried to remove the duct and a margin around it and not just take out some tissue for biopsy, I think because the VAB takes so many samples at the same time. I will see the oncology team tomorrow and decide after if I will search for a second opinion.

Beesie

What is DH? (Assume you don't mean Dear Husband.)

Good news that you've had the MRI and it didn't find anything else. MRIs are the most effective at seeing through dense breast tissue.

From what your surgeon said "remove the duct and the area around it" it sounds as though your calcifications/ADH/DCIS were contained to a small area. (In my case, even from just the mammogram imaging, which it turns out didn't see all my DCIS, my surgeon went in for my excisional biopsy with plans to remove breast tissue around the size of a golf ball.) From the MRI imaging, do you know the estimate of the size of the area of DCIS? And from the excisional biopsy report, how much tissue was removed and what was the size of the DCIS removed within that tissue? What was the grade of the DCIS? And do you know if the margin issue is on just one side, or do you have close margins in more than one location? You may not have all those answers, but they are questions to ask tomorrow at your appointment.

As clarification to my earlier post, it is always the goal with an excisional biopsy to remove the entire suspicious area (not just some tissue for biopsy). However if the diagnosis to-date has been ADH or another high risk condition, most surgeons will consciously balance tissue removal with cosmetic impact, more so than they would if there has already been a diagnosis of DCIS or invasive cancer and achieving sufficient surgical margins is necessary and critical. In any case, as both Ingerp and I mentioned, even when surgeons know before hand that there is a DCIS diagnosis, clear margins aren't achieved 20% - 30% of the time. There is simply no way for a surgeon to see the DCIS when they operate.

VeeHow

By DH I meant ductal hyperplasia, 2 Typical, 1 Atypical. I read the report but most of what it said got lost in brain fog, lol. It makes sense that the margins she took were very small, I didn’t think about that. They only found one side where the cancer touched the margins. That’s about all I am processing at the moment but after I see the oncology team I think I will try to get a second opinion. My surgeon said she needed to take some skin with the second surgery. Do you know anything about what they may have to do when they do this. I don’t know how much. Thanks for your help. Just having someone respond to my post makes me feel a bitbetter. 🙂

Beesie

VeeHow, my guess is that the close margin is the anterior margin, which is the one that is right up against the skin. I had a 1mm margin at the skin after my MX. When I had my exchange surgery (the surgery where the PS takes out the expander and puts in the implant), because of that close margin, I asked my PS to take a bit more skin on both sides of the scar line. She did, and it turned out that there was no additonal DCIS. But I'm glad I did that for reassurance.

I would think that with a lumpectomy it should be pretty easy for the surgeon to remove a small amount of skin when she opens up the incision. It's a good thing for you to get clarified from your team, to understand how clearly they know where the close margin is against the skin, how much skin will need to be removed, and how it may impact the appearance of your breast.

Hope that you come out of your appointment tomorrow feeling reassured both about your diagnosis and with your team. But if you are not comfortable, a second opinion is a good idea. The recommendations might be the same but that in itself can be reassuring.

VeeHow

Because of the Corona Virus my oncology team does not want to meet with me. I can call my nurse navigator if I have questions.Now I'm not sure where to go from here.

Bellevue1110

So sorry to hear this. I hope the nurse navigator can keep you in the loop about options or opportunities to seek treatment elsewhere...So much is getting moved to the "wait and see" category which just a week ago would have been unthinkable to wait on. I'm waiting too though just for an excisional biopsy. My doc said a month was fine, even if there was cancer, but not something that should wait till summer to deal with. Easy to say, but what are the options in this situation?? I understand why they're limiting procedures, but why oncology?

I'll be keeping you in my prayers.

VeeHow

Thank you. I have done some research but don’t know enough about my cancer, the treatment they want to do, etc. to even know what to ask. I’m just sick about it.

Beesie

VeeHow, the first thing to do is take a deep breath. This is all new to you - it's all new to all of us when we are first diagnosed - but you are actually in a pretty good position and have more information than you realize.

Here's what you know. Because you had the excisional biopsy, pretty much all, if not all, of the DCIS in your breast has been removed. The only thing left to do is get clear margins. Since it appears that the only positive margin is by the skin, it means that you don't have to worry that there could be more DCIS - or even something more serious - still lurking in your breast. When the positive or close margin is at the skin, there is no where beyond the skin where DCIS cells can be. When I was in your shoes, with positive margins after my excisional biopsy, because my problematic margins were in the middle of my breast, and because I'd already been found to have a tiny invasive cancer, it was possible that I could still have a lot more DCIS (which I did) and more invasive cancer (which fortunately I didn't). Your situation, with just one positive margin by the skin, is much clearer than that.

As for the treatment plan, with DCIS the choices are very straightforward. Your surgeon said that she would first like to do a re-excision to fix that one margin (which would involve taking some skin). This would be followed by radiation. Then, in most cases if DCIS is hormone positive (ER and PR, estrogen and progesterone), it's likely that endocrine therapy (anti-hormone therapy) will be recommended. However if your DCIS is not hormone positive, then no further treatment will be recommended.

That is the standard treatment for DCIS. From there, it's a question of choices you make, if you want to veer from the standard treatment. You could choose to have a MX or BMX instead of the re-excision. If you do, radiation most likely would not be required, and endocrine therapy would be optional if you have a MX and not necessary if you have a BM. Or you could opt to have the re-excision lumpectomy but decide to pass on rads or hormone therapy - that is a choice that some women make, particularly if they have a very small DCIS that is low grade.

My suggestion is that you ask for a copy of your pathology report. That should give you everything you need to about your diagnosis - the size of the area of DCIS, the grade of the DCIS, the size of the surgical margins, and whether the DCIS is hormone positive or hormone negative.

Have you seen my opening post in the following pinned thread? It should answer most if not all of your questions about DCIS, it will help you understand what you read in your pathology report, and it might give you some questions to ask the nurse navigator to pass along to your doctors.

Topic: A layperson's guide to DCIS

https://community.breastcancer.org/forum/68/topics/790992

VeeHow

My husband told me to call my nurse navigator and have them tell my team I need to meet with them and will do so even if I have to wear a hazmat suit. I am obviously a newbie and your info has been invaluable. I did read your Laypersons Guide To DCIS and I bet you have information all over this website, which is great. I am wondering if my team won’t meet with me I might ask if I can call each of them separately. I need to find info on radiation and some of the new more targeted options. If it is not too much trouble could you message me

Beesie

Yes, talking to doctors individually, or on a conference call with several of them together, would be a good idea... not sure why they are sending you to the nurse navigator instead of doing that. I have an appointment scheduled with my PCP this afternoon, and I got a call on Monday saying that they are moving all appointments to telephone, if that's feasible. In my case I just need some requisitions and renewals and wanted to discuss some test results, so a telephone appointment is perfect. A telephone appointment should work well for your situation too.

Asking about the different radiation options is a good idea. That's something I can't help with at all, but you might want to post a question in the Rads Forum on this site. I stick to topics that I have personal experience with and that I've been reading about for years. I never had Rads so I know virtually nothing about it. I wrote the Layperson's Guide to DCIS only after writing the same info hundreds of times to newly diagnosed women who were asking questions about DCIS, and the Moderators kindly decided to pin my thread to the top of this forum. Similarly, I wrote the pros and cons list about lumpectomy vs. UMX vs. BMX after responding to posts for many years, particularly because the same misunderstandings and misconceptions about mastectomies keep popping up.

What other "more targeted options" are you thinking about?

Have you read the NCCN Guidelines? These are the gold standard treatment guidelines used by most doctors in the U.S.. There is a patient's version of the DCIS (Breast Cancer Non-invasive) guidelines: https://www.nccn.org/patients/guidelines/cancers.aspx but these are pretty basic. The physician's version is very detailed. You need to register to be able to access, but registration is easy. https://www.nccn.org/professionals/physician_gls/d...

Here are the pages most relevant to you from the March 6th 2020 version; the two pages on DCIS treatment, a page about surgical margins, and a page about radiation:

VeeHow

Beesie it is so kind of you to get this info to me!!! Thank you!!

VeeHow

I would love some input about radiation therapy. Does anyone seeing this have any experience with it?

Ingerp

Many find the biggest problem with radiation is having to go five days a week for 4-6.5 weeks. The appointments are very quick, though--I scheduled mine at lunch time and didn't even take any sick leave. Your skin will eventually react but there's lots of good advice on other threads about keeping it moisturized. Mine eventually turned red, but no peeling or anything. Your RO will have suggestions. Fatigue is an issue with some people but I really only experienced it a couple of times each time I went through rads.

MinusTwo

As Beesie said:

The good news, again, relatively speaking, is that what was found was DCIS, which is a non-invasive condition.

That being said, as far as the medical community is concerned this is not an emergency. I know if feels like an emergency to you, but many women don't see an oncologist for a month or two after diagnosis. Nor do they have surgery for maybe another several weeks. I did have DCIS, and I just wasn't critical. It was four months after my mammogram & two -1/2 months after my biopsy before my surgery. Your diagnosis was just 3/17 -TWO DAYS ago. We all understand - it's VERY hard to wait.

During this crazy time, it's not unusual for docs to decline office visits. Several have had their nurses call me to see if I would like to have a telephone conference or to re-schedule in another month or two. Many places are postponing non-critical and non-emergency appointments, not to mention treatments. It's good that you are researching and making lists of questions so you will be ready, but you really need to force yourself to think about other things. If you feel the anxiety is overwhelming, I'm sure your doc would prescribe some meds on a temporary basis. For example - I have Xanax that I've taken approximately a total of 7 times in 9 years, but it helped me over a crisis or two.

It's my belief that radiation is not always recommended for DCIS. I could be wrong.

Last but not least - to your original question on 3/18 - I had DCIS diagnosed in one breast and very dense breasts. I chose a double mastectomy. I didn't want to fool around with worrying for the rest of my life. They did find additional DCIS in the "good" breast during surgery so I was glad. Even though I subsequently had a recurrence, I've never been sorry I had the BMX. Granted, I was over 60, so age might be a question in your case. This is a very individual choice that each of us has to evaluate.

Wishing you the best and we'll keep you in our thoughts.

Beesie

To add what MinusTwo said, because you've had surgery already, not just a needle biopsy, it means that all or almost all of your DCIS has been removed. From a medical standpoint, this makes it even less of a medical emergency.

After my excisional biopsy, between getting the MRI, having something show up in my other breast, going for another biopsy on the other breast (benign), getting in to see a PS about reconstruction, and then the coordination of schedules between my breast surgeon and plastic surgeon, it was more than 2 1/2 months after my excisional biopsy that I had my MX. My excisional biopsy was in early September (many years ago), and my MX surgery wasn't until November 30th. Since I had that microinvasion of IDC and all those dirty margins, I was worried that something more could be going on, but my BS assured me that he wasn't at all concerned - the MRI showed what looked to be more DCIS, but didn't show anything that had him worried about a more significant invasive cancer. Turns out that he was right. While more DCIS was found, there was nothing more than that. So the wait didn't cause any problems or change my diagnosis.

Have you talked yet to the nurse navigator?

VeeHow

I really appreciate your input. I understand what your saying about trying to be calm, it isn’t an invasive cancer and I was only just diagnosed, however I have been trying to get my insurance to pay for the MRI for quite a while, was misdiagnosed then diagnosed with DCIS after surgery and they could still find invasive cells with the next surgery. I believe I need to have my surgery soon because they might stop doing cancer surgeries for who knows how long due to the Covid-19 virus, they have in many hospitals. So there is a bit of a time issue. What bothers me the most is that I can’t meet with the specialists who are deciding how to treat this. They don’t know me and I don’t have all the info I would like too.
(I believe most people having lumpectomies, even for DCIS, are recommended to have radiation. I have already been told that that is what they will want me to do).

VeeHow

I replied to some of your post in my above post. I am so glad they didn’t find any more cancer and that you are happy with your outcom. Yes I have talked to my Nurse Navigator.

cake8icing

Veehow, the team that just did my MX last week (for DCIS) told me that starting this week, all DCIS cases were being postponed until after COVID-19 resolves and patients were being put on tamoxifen, presumably to slow down any further development of the DCIS. This was a comment to me, in private, from one of the team members; I did not vet this fact with my surgeon. But sharing with you for another question to ask your nurse navigator.

VeeHow

Thank you for the info.I’m glad I went ahead with the Lumpectomy while I had the chance.