Topic: What're your nipples lk after mastectomy & can u keep sensation?

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Mar 13, 2023 10:31PM

Posted on: Mar 13, 2023 10:31PM

coffeluver wrote:

Hi, so I'm new to this and haven't even had a consult with the breast surgeon about bilateral nipple sparing mastectomies, but am strongly considering it for being high risk. Mother had breast cancer & I was just diagnosed with ALH. I'm dying to know what your nipples are like after mastectomy for ladies who have had the nipple sparing procedure? I read somewhere that they are erect all the time. But my mom said that hers is not (she only had one breast removed). Also, I'm reading about nerve regenerating techniques with allograft. Is this something people are doing? I'm almost scared of it.. for fear there would be some permanent pain or nerve damage if the sensation remains. Also, is there anything you can ask your surgeon to do to avoid chronic pain from the mastectomy? Anything you can do to avoid capsular contracture of the implant? I know this is a lot. Even if you can send me to articles or direct me to other posts that answer these questions, that would be super helpful!

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Mar 14, 2023 03:08PM exbrnxgrl wrote:

Sorry that no one has responded. Because my bmx was over 11 years ago, nerve regenerating techniques were not a thing so I can’t help you there. My nipples are not always erect, but some women report theirs are. This is one example of how we can have the same procedure but different experiences . I think, think being the operative word, that a few members may have had some type of nerve regenerating procedure so please try the search function. As to avoiding chronic pain, capsular contracture or any other unwelcome side effects, I would ask my plastic surgeon and ask for a referral for physical therapy. Unfortunately, nothing that you or your surgeon does will result in a guarantee of unwanted side effects or complications, though many are statistically low risk. Human bodies just don’t work like that despite the best of human efforts. Given that, just being conscious of these things and staying on top of any issues as they arise should put you in a good position for avoiding low risk se’s (but no guarantees!) . Take care

Surgery 9/1/2011 Mastectomy (Left); Mastectomy (Right) Radiation Therapy 11/1/2011 Other part Hormonal Therapy 12/1/2011 Arimidex (anastrozole), Femara (letrozole), Aromasin (exemestane) Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2- Dx DCIS/IDC, Left, 4cm, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Mar 14, 2023 04:50PM lady2022 wrote:

Not sure this is helpful since I'm still going through the surgical process but I had a nipple sparing mastectomy. My nipple isn't erect at all. It looks maybe a little stretched out but I still have an expander in so will see what things look like once I get the implant. I also don't have pain from the mastectomy but do have pain from the expander. Can't wait to get it out. Haven't heard of nerve regeneration. Will have to look into that. Just make sure you talk with your surgeon about all your options and the risks associated with those options so you can make a decision you are comfortable with!

Diagnosed at 43. 1.6cm IDC and DCIS. Stage 1A. ITC in 1/4 sentinel nodes. Oncotype 7. No chemo or radiation. Surgery 10/1/2022 Mastectomy (Right): Nipple Sparing Hormonal Therapy 11/1/2022 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2-
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Mar 15, 2023 07:45AM pjc5399 wrote:

I had nipple sparing almost 8 weeks ago so have expanders. My nipples/areolas pre-surgery weren’t big (I was also small breasted) and were almost always pretty erect. Currently, the nipple itself is erect, not as much as it was, but still sticks out. The areola is not. It’s is much lighter in color than it was and looks bigger (because not erect). Hope that makes sense. If my expanders were more full (so not so lumpy and bumpy), my breasts would look pretty good. With clothes they definitely do (with or without a bra). I can’t say I have any real skin sensation. It’s not like I can’t tell if my breast was touched (It’s attached to your body) but you can definitely tell where you go from having skin sensation to not. I do know of two people who have gotten a lot of sensation back but they are years out at this point. I can make my areola “pucker” a tiny bit if rubbed which makes me think the nerves aren’t completely dead. 🤷♀️. A few other things….My armpit on the side where they took the sentinel nodes is similarly numb. This part was the worst for a few weeks…like a bad burn or sandpaper rubbing if anything touched it but that, very thankfully, went away. I haven’t had anything I would call pain though, just discomfort, and my range of motion is very good. I do hate the expanders. I’ve finally gotten to where I don’t think about them 24/7 but they just aren’t comfortable, esp at night. They have hard edges/places and are just like rocks attached to my chest. I do believe if you had them and they were overexpanded this might alleviate some of this issues but I have no desire to be bigger than I was so my fills stopped well short of the expander capacity. The incision has never caused any pain or discomfort. Hope all that helps. I know I had so many questions and just wanted to hear about experiences so ask away

Surgery 1/20/2023 Lymph node removal (Right): Sentinel; Mastectomy (Left): Nipple Sparing, Skin Sparing; Mastectomy (Right): Nipple Sparing, Skin Sparing; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2-
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Mar 16, 2023 12:13PM redrover wrote:

Hi. I had a nipple sparing double mastectomy on Feb. 14th. I previously had silicone implants and nipples that had sensation in them. After this surgery, nipples still get erect although I don't have a lot of sensation in the breast tissue. During the surgery, I had expanders put in and now have 450 and 500cc of saline in them (more in the side with cancer due to radiation treatment later this Summer). Although the expanders are situated a bit higher on my chest, they look okay in clothing. I'm still healing and watching the stitches fade away (scars are a lot more intense vs those for past implants). Going through chemo treatments and after radiation, will start on phase 2 of reconstruction (early 2024). Good luck to all!

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Mar 19, 2023 03:53PM jena1126 wrote:

I had nipple sparing double mastectomy 2 weeks ago. My expanders are still in but I’ve already had 1 fill. So my boobs look almost back to normal., but my nipple are quite erect. I don’t have much sensation in them right now, so we’ll see after some time has passed. I’m happy I did both, for me it was somewhat for my mental health.

Hormonal Therapy
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Mar 19, 2023 06:58PM lillyishere wrote:

I had bilateral nipple-sparing mastectomies 3.5 years ago and my nipples stay erect the whole time poking through my shirt. Annoying since I need to wear uncomrortable bra jsut to cover the nipples. If I knew then what I know now, I would have asked to remove the nipples.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Hormonal Therapy 7/31/2019 Aromasin (exemestane), Femara (letrozole) Surgery 9/1/2019 Lymph node removal (Left); Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Surgery 9/1/2019 Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Prophylactic mastectomy (Right) Surgery 9/19/2019 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Hormonal Therapy 12/1/2019 Femara (letrozole), Aromasin (exemestane) Dx LCIS/ILC, Both breasts, 2/5 nodes, ER+/PR-, HER2-
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Mar 25, 2023 03:36PM beach2beach wrote:


I'm almost 6 years out of a double nipple sparing mastectomy. I went straight to implants at the time of surgery, so no expanders for me. At this point in time I have quite a bit of sensation back. There are areas of my breasts that I don't really feel, but some areas I do. I do have some nipple sensation(not like the way they were originally, but pretty good) and they react to touch. In the beginning they were pretty much erect all the time but now not. It took time for sensation to come back.

Overall I was surprised that I got back as much sensation as I have now.

Good luck!

Surgery 8/8/2017 Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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