Fear of losing nipple

Hello I’m new here…I was diagnosed with high grade DCIS last month and mx with immediate reconstruction is on the 19th. I know it has to be done but wondering if anyone can tell me how they felt afterwards? I have exterely sensitive nipples and experience nipple orgasms, it may be an extreme thing to say but this feels like FGM to me

I’m the same regarding nipple sensitivity and I know that no matter what, my husband and I will find other ways to get around this. I have mx and immediate reconstruction on 14th Dec. 

For me, the big difference here with this operation is preservation of life vs religious/cultural reasons.

You can ask professionals not to take away your breast/nipple and be left with cancerous cells but I’m sure they would advise you against it.  For me, I’ll be thankful for whatever they do to rid my body of this disease so that I can start moving on.

Good luck x 

Hello Crackers, I was recently diagnosed with DCIS too and had a mastectomy with immediate recon just over a week ago. When I first was told I’d lose my nipple I was absolutely devastated (I’d never really considered it beginning a standard part of an mx, I guess I assumed nipple sparing was straight forward) for me it was more an appearance thing than sensation. My surgeon agreed to biopsy behind the nipple and see if it could be spared. Although it could have been, I ended up changing my mind a lot along the way and decided that as I’d have no sensation anyway, removing lowers the risks and because I’d have to have expanders rather than immediate recon I’d forgo it and look at nipple recon later. I’m amazed that it it hasn’t effected me as much as I expected seeing my boob with no nipple, having the fullness of a boob when I woke up was the key thing in the end (just me and my feelings, I know everyone is different when it comes to that!)
Sorry for babbling. I just wanted to say that in my experience I’ve been able to deal with it a lot better than I thought I would at the start of this journey and I hope it becomes easier for you too.
Good luck with the surgery x

Ah thank you everyone, that does help, always good to communicate with people in the same position. I’m totally up for op, I was just wondering how I will feel physically following loss of sensation? That is a lot of nerve endings to lose and was wondering what the brain does with the information

The loss of sensation has been strange and at times hard to handle I won’t lie. But 2 weeks in and it’s getting better. I had phantom nipple itches and feelings for a few days but that’s worn off now and as the swellings gone down my skin is getting sensation back. I guess it all takes time, I’m trying to think one day this will just be my new normal! Take care.

I am out the other side with a new breast made out of my tummy, and no nipple. So far there is a fair whack of pain coming from my new breast but I can’t feel them poking and prodding on the top when they come in - for now, this is such a bonus and I’m thankful I cannot feel them touching it. 

I can’t see much of my new breast yet as all the new tissue is underneath and I can’t standup straight or lift it up and it’s just so sore. Shape wise, it’s better than my other boob and much less droopy! Lol 

Thank you all very much and Nicola for a full account of how I may feel Weds morning as surgery is tomorrow. Even if my nipple coukd have been spared I think it would be just for asthetics which does not interest me, I would probably feel sadder have an unfunctioning one rather than none. Wish me luck, I go to hospital tonight as it’s miles away from home.

Good luck with your surgery and recovery x