DCIS Lumpectomy and Nipple Removal

MarcellaPa · January 2016

Hello all and Happy New Year!

I'm recently diagnosed with DCIS, intermediate grade, located at the 12 o'clock position. After meeting with my breast surgeon, who recommended a lumpectomy, I sought a second opinion to confirm my diagnosis before proceeding. At the second opinion, which took place at a prestigious, high profile, medical center--the breast surgeon concurred with the diagnosis but suggested that my nipple might be removed as a part of the lumpectomy. I was pretty shocked since that was never suggested by my first surgeon. Second surgeon said it might not be but he wouldnt know until the wire localization procedure.

I contacted the first surgeon's office and informed nurse of my question. She said that was associated with Paget's Disease and that the doctor would have mentioned it if it was part of my procedure. He never did and secod surgeon never mentioned Paget's disease.

So now what? Do I let my first surgeon know my second opinion doctor's inclusion of the nipple removal and ask why he didnt either consider it or inform me of the possibility OR get a third opinion?

I'm worried surgeon#2 is too aggressive and possibly taking a wider margin with nipple removal to keep his recision rate low (he said his was 15%). I'm similiarly concerned surgeon #2 is too laid back or remiss in his informing me of the possibility of nipple removal.

Any advice or thoughts are so very appreciated.

redsox · January 2016

DCIS often is close to the nipple and the surgeon may not be able to tell if the nipple is involved until the surgery and subsequent pathology report. It can make a big difference in the decision between lumpectomy vs. mastectomy.

I think you are right that the second surgeon is being more aggressive or maybe just laying out all of the possibilities and is basically asking you to consent to nipple removal if necessary. The first one may be assuming the DCIS does not extend to the nipple and will come back after the first surgery to tell you if the nipple does need to be removed.

marijen · January 2016

I think the nurse should have checked with Dr. Number 1 before answering your questions. I get wrong answers all the time from the nurses

Annette47 · January 2016

Either way, I’d want some clarification as to the odds they will need to remove your nipple. Frankly, for me, that would have been a deciding factor between lumpectomy and mastectomy - in my mind (not saying everyone would/should feel this way) there wouldn’t be much point to breast conservation surgery if I wasn’t left with nipple sensation. Better to skip the radiation and reduce the odds of a local recurrence if there wasn’t going to be much left afterwards. In fact that’s exactly the decision my mother made and why (mastectomy over lumpectomy). In my case, the cancer was nowhere near the nipple so I chose lumpectomy.

My point is not that if they are taking the nipple you should have a mastectomy, that’s clearly a personal decision, but removing or not removing the nipple is a major difference no matter what you would decide. I would want to speak to both doctors and find out exactly why they are recommending what they are recommending and if not satisfied by their answers get a 3rd opinion.

MarcellaPa · January 2016

Yes, I feel doctor #2 is being more aggressive and its worrisome. I received the online paperwork for the pre-surgical exam and the order for the wire localization clearly said "planned nipple removal". Even though he said it may not proceed after wire loc. was completed (after I balked), the order gave me the feeling he was most likely going to proceed with it to avoid recision

marijen · January 2016

However, Dr. number two may have been more honest with you regarding the possible nipple removal. I would go back and find out why doctor number one didn't mention it but his nurse claimed Paget's disease would require it. You are right to question what's happening here. Especially if you may end up with a mastectomy.

MarcellaPa · January 2016

Thanks for supporting my questioning of this issue. It just seems so odd that one doctor is approaching this as a simple lumpectomy and the second discussed the nipple removal as a part of the lumpectomy and also provided two other choices--a mastectomy as well as an oncoplasty alternative (breast reduction/lift). I was also given a consult with the plastic surgeon on site. My head is spinning! I started this process with the expectation I would have a simple lumpectomy....sigh.

marijen · January 2016

Monday morning Marcella, start making phone calls. You need to get to the bottom of this. You will get more help hereif you put in your full diagnosis here. What size is your DCIS and is it ER PR positive, Her2 negative or

have2laugh · January 2016

Marcella- could definitely see how you would be confused by two very different approaches. Might be helpful to sit down and make a list. Do you have a clear understanding of why surgeon 2 made his recommendations? Consider the word "might" not definite regarding nipple removal. Some MDs tend to paint a worse case scenario so you are prepared for anything. Margins are funny thing- no guarantee margins will be clear and what I learned is clear simply means not touching edges-some institutions may shoot for wider margins than others. Some larger facilities may have the technology to look at pathology during surgery while many have to wait days for these results to come back.

Also consider your comfort level with both doctors and the hospital where you will have surgery. As an RN for almost 20 years and a current nurse practitioner student, I do think the surgeon should answer your questions and not the staff. In offices, many people identify as nurses who are actually medical assistants and even if they are a well meaning RN-there is a reason our surgeons have the many years of training and education required to practice. A surgeon who is confident in their approach and sensitive to the needs of their patients would have no problem consulting a second time for some additional questions. Hoping you find peace in whatever decision you make and quick recovery.

MarcellaPa · January 2016

Thanks for your reply. I'm still trying to get answers and it's very disturbing. Doctor # 1's office called me back but the doctor is on vacation and apparently can't contact me until he is back in his office on the 14th of January. I initially thought it was his nurse who suggested the nipple removal would be related to Paget's Disease and as she said " Thats not part of your case". I was told this morning that was the office manager who told me that. The nurse I spoke with this morning told me nipple removal was considered a central mastectomy and again said doctor would have told me. The nurse also said they will not scedule surgery until they receive the pre-surgical EKG, physical and blood work from my PCP.

I am going to attempt to email BC #2 to clarify what his thought process is regarding nipple removal, in the meantime. He is at a distance otherwise, I would schedule to see him in person again.

I did make an appointment with another BC here locally for third opinion, just in case but this seems like a lot to do for what I thought was a simple lumpectomy.

I'm not happy...sigh.

MarcellaPa · January 2016

Update:

I spoke with the 2nd surgeon and he recommends a central mastectomy, also called a central lumpectomy, to remove the nipple due to the close proximity to the DCIS (behind the nipple). Thank you all for your comments and suggestions.

redsox · January 2016

I think you should consider getting consults with both a rad onc and a plastic surgeon to get complete assessments of all of your options before making a decision

MarcellaPa · January 2016

Thanks for your reply. This really is stressful and I appreciate the voices of women here who understand.

I agree with you about further consults. Although I did have initial consults with a rad oncologist and plastic surgeon the same day as I saw BS #2. the meetings were brief and I was ovewhelmed. Treatment team associated BS#2 recommendations were:

1. complete mastectomy/no rads, not sure about hormone therapy.

2. lumpectomy with nipple removal (I guess its called central mastectomey or central lumpectomy) and then "whole breast" rads for approx. 7 weeks and hormone therapy for 5 years.

3. Central mastectomy/lupectomy with oncoplastic surgery (breast reduction/lift), followed by 7 weeks of "whole breast"rads and hormone therapy for 5 years.

Prior to that treatment team evaluation, I had seen a surgeon who only discussed a lumpectomy with me and said rads were "negotiabe"/ He hadn't scheduled any consults but was ready to schedule surgery for me.

Due to this discepancy between BS#1 and BS#2, I have scheduled a consult with a very well respected BS for 1/19/16 and perhaps she can refer me for consults with the rad oncologist and plastic surgeon she works with.

The issue of nipple removal has thrown me for a loop and I'm wondering if a mastectomy might allow me to avoid further treatments and their side effects. If I hadn't mentioned it, my diagnosis is DCIS, stage 0, intermediate grade. ER/PR hasn't been tested.

BrandyR · January 2016

hope you have a good meeting today. I, too, am facing a central lumpectomy with nipple removal because of the location. I'm finding the loss of the nipple on be the most difficult and emotional part of my diagnosis.

I'm leaning towards lumpectomy with reduction and lift but still have a lot more research to do.

MarcellaPa · January 2016

Hi Brandy!

Thanks for following up with my situation. I met with the third doctor today and I feel more informed regarding the thought processes related to nipple removal in my case. She explained that nipple removal was not usually part of a lumpectomy, at least as far as planning it ahead of time. I understand that what is more typical when the DCIS is close to the nipple, is that the surgeon will test the margins to determine if the nipple is salveageable--not just remove the nipple preemptively. This applies to DCIS, non-invasive cancer--not when the cancer is invasive.

She felt surgeon #2 who planned the nipple removal was taking a conservative route, a kind of "one and done" approach to avoid having to go in a second time to remove the nipple. She said something very important though--that just because surgeon# 2 avoided a margin issue near the nipple by removing it during the surgery doesnt guarantee he might not have to schedule a second surgery for a margin issue that isn't nipple related. Good point, right? She also said that once you take the nipple, you cant reverse it. So after today, 2 out of 3 surgeons are advocating a step by step approach--not taking the nipple without testing first.

I totally get it regarding your upset around this.I don't know why it threw me also--after all, It's not a kidney..lol

But, it's removal will remind me I'm forever changed and it's just another thing to adjust to that I would rather not unless I have to. If after testing, its decided it has to go--I'll make peace with it. A second surgery isnt ideal but at least I'll know I did everything I could.

I have eliminated the masectomy option as being too radical and also eliminated the oncoplasty/breast reduction option. I just want the minimum done in order to prevent a recuurence and help me get back to my life as soon as possible.

Im now leaning toward returning to surgeon#1 who I liked a lot in terms of his bedside manner and reputation.

I'm going for my pre-surgical physical/ekg tomorrow and then I'm going to spend some time NOT thinking about all of this until my surgery is scheduled. All of these decisions and doctors visits are stressing me out : (

Best of luck with your research and decisions

BrandyR · January 2016

it is all very stressful! Sounds like you are making progress towards starting your plan. All the waiting makes me crazy and exhausted. I still have additional appointments, including another ultrasound as a follow up on my MRI.

I, too, think a double masectomy is too radical for me, but I also want to make sure I fully understand the risks and recurrence numbers before I make my final decision.

In the meantime time just drags on. Good luck to you and remember to give yourself a break!

Staynshape · March 2017

Curious to see what your results were. I recently had a nipple removal and I don't really think it may have been necessary for DCIS. There are so many good surgeons around the country giving women in a wait-and-see approach, monitoring them closely. Please let me know of you decision

MTwoman · March 2017

Staynshape,

That thread has been active for over a year, so you might not get a response. If not, you can start a new thread in the "DCIS" or in the "Surgery-before, during and after" forum.

DCIS Lumpectomy and Nipple Removal

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