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DCIS and nipple removal

4 REPLIES 4
joannajackson1
Member

Re: DCIS and nipple removal

Hi J 

I had my lump removed on the 22nd December with a few lympth nodes removed for biopsy but the results came back that I needed a bit more margin taken out. This meant removing my nipple, although they didn’t give me a choice of surgeries. They did say they could do a reconstruction in the future though. 

I have always said to myself since the beginning of this journey that if anything needed removing, I would stay positive about it. I had my nipple removed on the 12th Jan and it went really well. It was a really quick surgery, So I came around quickly. I also noticed it was less painful afterwards compared to the first surgery. I took my dressing off last night with my boyfriend. I freaked out for a minute or too because I didn’t dare look! But after a lot of reassurance from him, I opened my eyes and was shocked to see that it wasn’t as bad as I imagined. It’s still my boob and looks the same, just doesn’t have a nipple on it. I am really happy with the outcome and hope you are too with whatever you decide to do.  
Sorry if this doesn’t help you, but your story sounded so similar, I thought I would try and send some re assurance 🙂 

xx

Seabreeze
Member

Re: DCIS and nipple removal

Hi ReginaPhalanges,

You are welcome - thank you for replying : )

Yes it's good that its been caught at the DCIS stage which is early on, and yes it is a big deal re the location of the op, loss of nipple and associated decision re recon or not to have recon.

Good that they have given you the options and oh so understandable that your head may spin for a while on what's the best thing for you. Also good that your instinct is making you feel one way...since it is about you! Perhaps knowing a tad more about how much tissue they need to remove from elsewhere, and issues associated with that, might help strengthen your current thinking.

I hope you get the additional info you need over the next couple of days. It'd be good to know how you get on and which direction your thinking and feelings go.

Plus if you think running your thoughts/feelings past any of us might help please feel free. One thing I've observed in my (eek!) nearly 6 years posting on the forum is that members are extremely aware and respectful that individual preferences (and situations) vary and there are quite a few regular forum members who post, and really understand and get it!

Be kind to yourself, take one day at a time and remember you are making the decision about what is best/right for you now (given our list of what's most important to us can change over time, as life's events (highs and lows) happen to us).

X Seabreeze          

ReginaPhalanges
Member

Re: DCIS and nipple removal

Hi Seabreeze, thank you so much for sharing that with me. That’s all really helpful advice which I will definitely do, I’m hoping I might be able to find out a bit more tomorrow as the bc nurses at my centre do seem really helpful so far too. You’re right that it does all happen so very quickly, in the last week I’ve had biopsy results, appointments with different doctors and surgeons and new information to process at each meeting. It’s been a roller coaster of emotions so far and it’s only been one week! Your comment about confidence and feeling self conscious I can really relate to, as that’s where my head is at too right now, obviously after the shock of the diagnosis and the gratitude of being told that dcis is generally early and treatable. The surgeon was talking with his surgeon hat on, which I obviously respect totally. But I’m also trying to think of how I might feel about myself further down the line which I think is quite a big deal isn’t it and factors into the decision making. Hopefully I’ll have a bit more information to go on tomorrow as it’s quite hard to make the decision without it I think.

I’m so glad you’re coping and doing ok. Thank you for your message and sending you a gentle hug back xx

Seabreeze
Member

Re: DCIS and nipple removal

Hi ReginaPhalanges,

Welcome to the forum. It all happens so quickly once your diagnosed - so I understand how you feel re the need to make a decision on something like that so rapidly and not feeling quite sure. 

You sound like you are leaning to the side of nipple reconstruction. Given it's hard taking info in when it's mentioned in the diagnosis and op meeting, I think it would be worth you phoning your breast cancer nurse at your hospital just to find out a bit more about what the nipple reconstruction involves, whether you are right thinking this still means it would be as a day case and perhaps see if they can give you an indication as to how other women have felt further down the line, after deciding whether of not to have the nipple reconstruction.

You could also ring the nurse at BCN for a bit more info on what the nipple recon typically involves - tel no as per top right hand side of screen.

I'd also suggest you post your message in the next section on of the forum, going through treatment, surgery, since it's more likely women who have recently had to make such a decision will be looking at posts there (or ask the moderator to move your message chain). 

I can't answer your specific q about nipple recon, however if any of this helps at all, I had invasive bc, had lumpectomy (close to nipple), ended up very lopsided. I eventually decided to have a reduction on my non bc side to balance out a tad (plus get rid of back pain due to standing like lurch) - this is generally referred to as a type of bc recon surgery, since it relates to the overall end result/appearance/weight etc. I was unsure, and it took me quite a while to decide. All such decisions are very personal, and it's what's right for you that counts. I was really pleased I had the reduction since it made me feel more physically comfortable, got rid of the back pain, plus I was more able to wear normal tops and not feel I needed to hide under a sea of loose tops. It also made me feel much more confident (less self-conscious?), and something which I hadn't expected, less reminded of the bc (should add I couldn't wear a prosthesis due to a rare skin reaction). 

It sounds like you just need a bit more information to back up your initial gut reaction (or otherwise) to make your decision. I know this sounds like a rather silly idea, but once you have more info would pretending for a day that you've made the decision help, re seeing how you feel by end of the day? 

I hope you get some responses soon from women who have experienced your dilemma, to help you to decide what's right for you.

With a gentle hug

Seabreeze XXX (6 years on, and 2 reduction op's later! and doing ok)

 

ReginaPhalanges
Member

DCIS and nipple removal

Hi everyone, I am new to the forum and have just been diagnosed with DCIS moderate level requiring lumpectomy. Saw a surgeon on Monday who told me that due to the location he will have to remove my nipple. In a bit of shock now as was asked to make a decision whether I wanted straightforward surgery to do this, or surgery where they could use some skin from my back (MICAP I believe?) during the lumpectomy to make a new nipple. This would be a longer surgery but could still be done as a day case I believe. Needed time to think and research the cons a bit before another meeting tomorrow, but still very unsure what to do although my instinct is that I think I would prefer that to just removing the nipple. Just wondering if anyone out there has any experience of anything similar regarding nipple reconstruction as part of a lumpectomy surgery? 

Thanks so much,

J