I just read your post and remembered having that for a while as well. It was like when you were cold and your nipples would get hard... that's what I felt. I used to even joke about it... it's been 8 years since my bilateral mastectomy. The sensation has gone away, don't remember when, but even some of the sensation in my skin has come back. Don't think much about it anymore. Hope that helps. Sorry that you felt a little embarrassed, there is so much we have to learn to adjust to... a little compassion, a little patience, and humor all help. Oh and I still wear light camisoles like you mentioned above- something that DOES NOT MOVE.
Triple-Negative Breast Cancer, Ductal Questions
Phantom nipple sensations - common with bilateral mastectomy!
Asked by leepenn on Wednesday, February 29, 2012
Phantom nipple sensations - common with bilateral mastectomy!
Who knew!?!?!?!? I sure as heck did NOT. I posted something here... got no responses... felt a little embarrassed... Deleted it... But now I'm back with the phantom nipple sensation topic. I did some research and discovered that around 1/3 of post-mastectomy patients have phantom nipple sensations. Since these data come from surveys, I kind of wonder if the number is actually higher.
So, what do you do about your phantom nipple sensations, if you've got them?
I've discovered that wearing something that DOES NOT MOVE against my surgical scars, which are very fresh, helps loads. But still, I could swear to you right now that I have nipples (she says right before looking down her shirt - thus confirming the absence of said nipples).
11 Answers from the Community
I'm glad you posted this. I had a bilateral mastectomy last March. I started having nipple sensations about a month ago. I actually looked to see if they had spontaneously regrown! I figure this is like phantom limb pain after having an arm or leg amputated. I have to laugh at this, it is just too bizarre.
And I thought it was just me! Sometimes it will hurt and then go to put my hand on it and realize "Oh yeah, THERE'S NOTHING THERE". It has been about 7 weeks since the bilateral mastectomy and I am still getting phantom nipple pains. I also get these "electrical" sensations sometimes like the nerves are firing up or something. It's like an itch that you can't scratch - yeesh!
It has been 4 weeks since my bi. mastectomy. I too have pains where my breasts were, not so much nipple feelings tho just like shooting pains. I think it is happening more since feeling is slowly coming back. The "shocks" have subsided (thank God) but still itchy areas and discomfort when I am upright for a long period of time. I feel like my whole chest cavity needs a break and I have to either lay down or at least recline and lay still. I also am more comfortable with snug cami's or mens A-shirts. Steri strips are still in place so it's not always comfortable to wear the fake boobs either. I'm actually not as selfconscious as I thought I would be since mast. Anybody else feel that? I probably will have more trouble with my hair falling out. Chemo starts in 2 weeks. Any info. on what emotions I can expect to go through and share them with my son would be much appreciated.
So I have no experience with this but I did study phantom limb pain in college. I know that for amputees they use mirror therapy to help with the pain and sensation of the phantom limb (you can google it..it works really well). It sort of tricks the connections in the brain that are still there for the body part into thinking there is a body part there again and then they can work through the pain. I'm not sure how this would work for nipples but it could be worth a shot if the pain is bad. I also know that most of it is caused by the nerve endings that have been disturbed from surgery, massage and gentle touching (sorry if that sounds bad ha!) may help to get the nerves to calm down.
Hey everyone - thanks for the responses...
When one talks about nipples, lots of people get uncomfortable... Interesting, eh?
Anyway, the phantom nipple sensations have abated dramatically... I no longer feel absolutely sure I have nipples. Now, I feel that way occasionally... but not more than that.
I massage my scars daily in hopes of minimizing potential keloid formation... I've got a pretty thick scar on the left - over maybe 30% of the length of the scar. Massage is supposed to help with that.
I don't have much pain... My right side - the side of the sentinel node biopsy - is still quite numb... WHich is WEIRD! When I put on deodorant, I can tell I'm doing it, but I can't quite feel it. Strange.
For those feeling loads of pain... My surgeon told me that this has to be dealt with early on... Apparently, it's a nerve thing that can be treated, but only early. It's called post-mastectomy pain syndrome, and there's a short-term medication that can help with that. He told me that the window of opportunity is around 4 weeks after surgery. So, if you are experiencing this kind of chronic pain, please consider talking to your health care providers about it!!! I seem to have escaped this potential side effect.. I just have the weird numbness, which I'm getting used to. And the numb area seems to be slowly but steadily shrinking. I just hope it keeps going in that direction! Weird how everything is so connected like that.
Anyone else have a bizarre spreading feeling in the chest upon drinking cold liquids? That's a weird one too. The spreading feeling is slowly but surely shrinking as well, but everytime I drink some cold water, it feels like my esophagus is like 6 inches wide!
Ok - have a great day everyone. Thanks for the thoughtful responses.
I got chilled the other day and also had the sensation that my nipples were reacting and also had to look to see if they had "regrown". One can only hope! When I get "fills" I feel the needle go in alternating from one week on one side, then the next week, I feel the needle on the other side. This is strange. But I'm hoping that some feeling is coming back.
As always, thank you for sharing your experience! I hope all is well.
Thank you for your question. I hope all is well.
Your comments reminded me of some content we have on the site about mastectomy and double mastectomy.
One more thing, I wanted to let other WhatNexters know about our Beginner's Guide to Cancer, which includes a guide on how women chose between a lumpectomy and mastectomy.
Best of luck to all,