DCIS Right Behind Nipple

DagnyT

Hi all,

I was just diagnosed with DCIS with a microinvasion of IDC directly beneath / behind my R nipple. I’m ER+, borderline PR+ and HER2-. The dr who did the stereo biopsy had a very difficult time because the calcifications (I had no mass or tumor) were so close to the surface of my nipple. The follow up mammo shows no more calcs, it was a small cluster to begin with.

Has anyone else has DCIS in this location, close to the surface and right behind your nipple? I have lots of questions about how and what surgical procedures you experienced. I did search the boards, but couldn’t find any other posts on this topic. I also posted my question on the lumpectomy lounge thread.

Thanks in advance for your help

geebung

Hi DagnyT,

Sorry you find yourself here and that you haven't had any replies yet.

It's been neatly 11 years since I was dx with DCIS. Initially, I had a wire-guided excision but, as it was extensive and multicentric, I was advised to have a mastectomy. The path report said it was in my nipple. I had wanted a nipple saving mx but this finding showed me that my surgeon had made the right decision.

Best of luck with everything, xx

DagnyT

Thank you geebug. I have an apt with a bs tomorrow at Dana Farber, so I am going to be asking her all these questions! I am surprised that no one else seems to have had bc in this location. So i will just post up what i wind up learning

Peacetoallcuzweneedit

Hi DagnyT -

My DCIS was in the 6'oclock position directly behind my nipple. It was large though - 6cm and initially MRI showed no nipple involvement. My BS said MX for right, and nipple too close and it needs to come off as well. I opted for DMX and final pathology actually showed nipple involvement so removing it was the best decision. I followed all of BS's advice....

DagnyT

Thank you peace. I was sure I wasn't alone out here... May i ask, did you have any surgery prior to your MX? Did you have an excisional biopsy or anything? I had a stereo biopsy which removed all the calcifications behind the nipple (it had been a very small cluster) and my path report says 1mm size DCIS, although a micro invasion of IDC. I don't want to have multiple surgeries, but at this point i really do want to keep my nipple.

Peacetoallcuzweneedit

I had a stereo biopsy on that breast (left) and one on the right. No other surgery before. My DCIS was 6cm and the final pathology showed the nipple involvement, my MRI did not. The MRI was a week later after my biopsy and diagnosis. My DMX was 3-4wks later. My MRI report said I was a candidate for nipple sparing, and my BS said "yeah no, way too close." I did not have an opinion about keeping the nipple and had both removed....my neighbor downstairs had DCIS as well, and a lot of it. She had BMX about 8years before mine. (Coincidentally we had the same BS and I did not know she was a survivor until I was diagnosed this past May) ...she kept her nipples....she did have strong opinion about keeping hers...and to this day she remains recurrence free...

DagnyT

Thank you very much! I am glad to hear that both of you are doing well.

Lorrainenj

right there with you. Dcis Calcifications behind the right nipple. Seems to make everything tougher. I had seeds implanted to guide the surgeon today and they had a tough time. So do did I. I am thinking that it will be a miracle if they don’t remove my nipple. I am very worried. Hope you have a good outcome. We have it rough because ours is a very sensitive area.

DagnyT

hi Lorrainenj. Sorry, but glad, to find someone with the same location as me. When is your surgery? I am waiting for biopsy results for Pagets to come back on Monday, which will impact if they can even save my nipple. I will send you good thoughts for a successful surgery. Did you decide on a lx? That is my preference, if I don’t have Pagets. Stay in touch and let me know how things go. A good luck!

Lorrainenj

I am having surgery on Tuesday 9:30 am. I will be at Sloan Kettering. My daughter is a doctor and she told me to use them. They have a good rep. I will post after surgery and let you know the outcome. At this point I am looking forward to not waking up with this on my mind every morning. If I have to lose my nipple - then I will roll with it. I have a friend who says you can get used to anything. I think it’s true. There is a good side - right under nipple means close to the surface. I think our breast shape will be less impacted. There’s that! Stay positive. Everything will be fine. Sending you good thoughts

Lorrainenj

lumpectomy. Yes.

DagnyT

I’m going to be seeing a bs at Sloan right at the same time that you will be going into surgery on Tuesday. So I gues they are not the same....my appt is with Dr. Barrio. Who is your surgeon? Do you already have a radiation and oncology team? I would love to know who you are working with and hear about your experience. I’m single and don’t have any kids or family, so I think I will be looking for a little bit of extra support from my medical team.

I will be thinking of you on my drive to SK on Tuesday morning and sending you the best of wishes and luck for a successful surgery

Lorrainenj

oh wow!! I will wave to the first floor. I will be on second floor. I am working with my bs dr Capko. I will be at msk in Middletown nj. The new center. You too? Are you just starting treatment? I haven’t seen an oncologist yet. Have an appointment next month. I was in a bad car accident last October, and they noted my DCIS from tests ordered for my injuries. I had my biopsy at riverview in red bank. I am a retired teacher and live alone so know where you are coming from. Best of luck to you. PLEase keep me posted and let me know if you need suppo

DagnyT

hi lorrainenj. I am from CT, so I am going in for my initial consultation with dr Barrio out in Westchester (that’s still far for me, but at least I can drive and not have to be on a train timetable).. so our waves will have to be across Manhattan on Tuesday.

I have a combo diagnosis of DCIS plus some IDC, they won’t know how much until surgery. I’m also waiting for biopsy results tomorrow to rule out Pagets (which would be a third problem); since that impacts my treatment options. So this weekend of waiting again for results has been tough. I can’t get to the point of making plans yet and that’s hard. Living alone, you know that this means figuring out a lot of logistics. And the holiday time makes it even harder to ask other people to take time away from their own families to help you....so i want to give people advance warning as much as possible.

Do you know if you are getting a sentinel node biopsy on Tuesday as well? That’s going to be one of my questions to my bs when I meet with her.

I’ll truly be thinking of you and sending you healthy successful surgery mojo on Tuesday

Lorrainenj

hi DagnyT. No sentinel node for me. Lumpectomy only. I have some suggestions also for living big alone with bc. I bought a robot vacuum. I can get it going by touching it with my toe so I don't have to bend over and it will go back to it's charging station when it needs to. So far I think it's going to be very helpful for me. I just cleaned out my closet which for some reason made me feel better. I decorated my home for the holidays just to cheer me up - you have to be your own sunshine team you know sometimes. Making sure I have a lot of single dollar bills in the house so if I have to order food I can tip the driver. I touched base with both my closest neighbors. People can be really nice sometimes. They both offered help if I need it. I've saved some movies to watch from my recuperation. I bought a box of my favorite candy and a tin of really good popcorn because I have a feeling I'm going to need that after the surgery. If we lived closer you know I would be there for you. I read that Paget's is extremely rare. Be positive. I posted to you on another board to let your doctor know you're going to need a sedative of some kind for your radioactive seed placement due to the location of the DCIS. You have to speak up especially when you're alone. Let her know the biopsy was painful. I am in toms River New Jersey down by the shore. I just moved here three months ago. I had a car accident last October then I moved here from Northwest New Jersey, then I was diagnosed with the cancer. I don't know a soul here. My daughter is a half hour away which helps but she works crazy hours. I will still wave to you. I’ll be thinking of you. Good luck.

DagnyT

thanks lorrainenj. It is great that your daughter is at least in NJ with you. But I think your tips about dealing with the nitty gritty alone are really great. Thank you. I hope that you’re feeling ready for Tuesday to get here so you can move past this surgery step and start on the road to recovery! I hope / assume that you will be in and out the same day. I’ll check in on you Wednesday (specially if you feel board with movies and snoozing and want to post and chat) and I’ll be right there with you in spirit on our MSK Tuesday’s.

Icietla

DagnyT, I am so sorry about your diagnosis. Since you have been diagnosed with IDC, you should expect that in connection with your treatment surgery, at least your sentinel lymph node/s will be taken for Pathology Lab examination.

I know all the waiting and wondering is awful. After your treatment surgery there will be another stretch of waiting and wondering.

(((Hugs)))

MTwoman

I had 2 areas of DCIS close to my nipple (close enough that the snap of the core needle made me come right off of the table each and every time). For me (since those 2 were in a separate quadrant from my original lump/lx) it meant mx and no nipple sparing (although that wasn't done as often back then). C'est la vie. 15 years NED seems like an ok trade to me

I think once you get your results back and can formulate your treatment plan and get your team selected, you'll be in a better place as you can start making decisions. The waiting and not quite knowing the full story is a hard spot to be in, as it feels disempowering. Making decisions and getting actively engaged in treatment means that you're doing something, and each step of the way, you're getting it behind you. You can do this!

DagnyT

hi ladies. Sorry to have been absent! My IT department decided to shut down my access to our website because the word “breast” appeared in the address...took two days to resolve...

Lorrainenj, I was absolutely thinking about you and waving across Manhattan this morning as we had our MSK days. I hope things went well for you and you are hoe and resting comfortably.

I finally got the good news that I don’t have Pagets! And just as great, I felt that the bs I saw this morning (Dr Barrio at MSK) was fantastic and we are now making a plan. They have some concerns about an irregular heartbeat, so I am back to meet with different dox tomorrow. But if I get cleared, then my initial surgery will be on the 28th. She wasn’t sure about the ability to save my nipple depending on the margins that she needed to get...but when I mentioned that I didn’t care if she made my breast smaller (and that I had been planning on a consult for a reduction In February before all of this came up), she was much more optimistic about saving the nipple. She said that if she could take more out and even relocate the nipple to a healthier location and I didn’t mind being smaller, then she would have a much easier time and I could get a reduction on the second breast 7-10 days later once they could confirm clean margins. So that is the tentative plan, once they clear me for the heart issue and the reconstruction surgeon signs off.

Thanks for all your support!

chronicpain

DagnyT, I am so glad to hear the upbeat news for you.

DagnyT

thank you chronic...so glad to finally feel a little better! Sending that good feeling out to all of you. We have to embrace the good days

Lorrainenj

Great news DagnyT. I knew you were going to get good news. I have good news as well. My surgery was great. No nipple loss. I looked down afterwards. One and a half inch tiny mark. No pain. I am telling you I was so happy. She did an awesome job and my breast looks no different in shape or size. There’s swelling I’m sure but I am shocked it went so well. Tonight can’t sleep and am incredibly thirsty. Prob from anesthesia. Having dcis so close to nipple I anticipated the worst but NO!

Hold on to your hat. We went to lunch afterwards. Yes we did. You will have a good outcome too. MSK rocks and my surgeon was a rock star today!! Keep me updated. I waved to you too. 👍 smile!!

DagnyT

lorrainenj, you are a tiger! I hope you’re not one of those super-ladies who eats nothing but kale and does Pilates 12 times a week!!! I am so glad to hear that your surgery went well and I am amazed that you were able to go out to lunch. You’re going to be my inspiration! My appts went well at MSK, and I did choose to go with that team over Dana Farber. Such a better fit. The docs I saw on my second day thought that as long as my surgeries were split in two, then they were ok clearing me despite the heart irregularity. So I am scheduled for the first one in 12/28. Since I will have my lymph notes biopsied, they did say I could expect to be out of work and uncomfortable for 3-4 days. But my surgery is on a Thursday, so I am hoping that I will be able to go back to work on Monday.

How are you feeling today? I know some have said that days 2-3 afterwards felt worse than the first day, but then everything improved quickly. Did you get advice to ice your self for swelling? I was told to do that after I had my biopsies and it helped.

Thinking about you today. Hugs

DagnyT

Hey lorrainenj - hoping your recovery is going well. sending you hugs.

Lorrainenj

thanks. Feeling good! Not pushing it. Dizziness gone. No pain unless I’m lifting something. A slight burning sensation I don’t notice unless I’m thinking about it. I am icing the area and it seems to help. They have me in a compression bra which is not comfortable. I’m a big girl so it is tight. No kale. Lol. I know you are going to be surprised how well it will go. I was lucky my calcifications were under nipple. I think it’s tougher when the site is atop the breast. Just wait. It’s going to be ok. My cousin stayed with me a couple days but honestly I could have taken care of myself but she is good company.

I’m an anxious person so was genuinely shocked it went so well. Now waiting for pathology but telling myself to be positive. It’s amazing my breast looks the same as before the operation. Hoping you will have the same outcome. I did not have lymph node operation so no info on that.

Enjoy your holiday. Sending my best wishes your way. You’re stronger than you think. !!

Lorrainenj

btw I was an afib girl. Was cardioverted in 2015. On betapace and blood thinners. My heart was fine. Yours will be too!!

DagnyT

wow lorrainenj, we are so similar! Down to our heart issues. So you reporting back that you’re doing well gives me even more comfort. Very glad that you’re recovering well and things feel manageable. I am single and live alone, so my plan is to have a friend drive me back from NYC to my house on the day of surgery (about 3 hour trip) cause I know that the pain meds and surgery meds will be strongest right after the procedure...so that trip won’t feel so bad. (Though I don’t think I can match your amazing feat of going out to lunch on the way home !!!). Then I was planning on being on my own, but with the phone handy to call someone if I felt like I needed company or help. Based on your experience, I think I’ll be ok with that plan. This weekend I do need to go buy a supportive / compression bra. Did you get one from your Dr’s office or bring your own? I am a droopy D, but I’m wide spread and I’ve got so much hanging under my armpits, that I have a terrible time finding any bra that gathers up all my stuff and holds it together!

When do you expect to get your Path report? My dr said about 7-10 days for mine, but party because of the impact of the holiday. I’m hoping that yours will come more quickly!! Are they recommending radiation or any hormone therapy for you, or is that all dependent on the path report?

I’ll be keeping my fingers crossed that you get back great results and that your journey can stop at this step!

Lorrainenj

Elizabeth pink post operative bra. On Amazon. They gave me one after surgery but it was so tight and I ordered a larger size. Scroll down on Amazon sight and it will show measurement guide for ordering. I think it goes to 6 or 7x. It’s a sturdy bra and is easy to take off and put on. You might order 2 so you can wash one while wearing the other.

My path report I will have on Friday. Hoping for good news.

I did not have lymph node surgery, did have lumpectomy although it was dcis and not a lump. I would have been ok by myself the next day. You will be fine. Planning ahead is key and those of us who live alone are good at that. I came home to clean sheets and warm jammies. Lots of fresh flowers. All done by me for me. Put yourself first.

I have been stress eating and hopefully after Friday and with some needed good news I can start on a sensible diet.

Good luck. !!

DagnyT

so glad to hear you are continuing to recover well. Thank you so much for the bra tip! I’m heading to amazon this afternoon for one. I will be keeping you in my thoughts for a good answer on the path report on Friday. Let me know how it goes. I love the idea of flowers waiting. I put all my holiday lights and Christmas tree on timers so that they would be lit and cheery when I came home. But I’m going to send myself flowers too.

Keep healing!

Lorrainenj

love that!! Time to pamper yourself!!

Lorrainenj

pathology was great today!! Only found 3mm of dcis. Only 2 of 15 slides showed dcis as well. Surgeon thinks I may not need further treatment. This is such a relief. You can get good news at the end of the road. I still will see an oncologist next week. Surgeon said my hemotoma from the biopsy was the size of her fist. I’m very sad about that. The hemotoma caused me such pain. But I won’t think about that today. I will think about the good news.

I will be thinking about you on the 28th. The surgery is going to go well I’m sure. My breast has not given me pain although it is swollen and a bit sore. It looks exactly as it did before the lumpectomy. Just some bruising. I needed no pain meds. Slept on my right side that night. I have about a one- one and a half inch line below nipple. Very small and I’m sure will fade.

Be happy. Almost over!!! The worry is no fun but you will have suchvrelief when it’s over. Please post how you are doing. Be well!!!