Mastecomy numbness following surgery

scaredashell07

hello. Had my MX last week and still have lots of numbness under arm and chest area. Some feeling has come back but still lots of numbness a week later. Is this normal?

Notmyself

I have been told it is very normal. I still have very little feeling across my chest (below and above the mastectomy site) and I don't really feel my armpit. My mastectomy was August 24th. Also the back/underside of the my arm feels weird.

ksusan

Yes. You may have numbness in some areas for quite some time, or permanently. The surgery requires that some nerves be cut. Some feeling usually returns, but it's hard to predict.

HelenWNZ

I'm pretty much numb in all those areas too and was told that nerves were sacrificed when so many lymph nodes were removed. My op was 31 Ma

ravzari

100% normal.

I'm getting close to 5 months out and still have large numb areas.

Most numbness resolves within a year but, in some cases, it can be permanent either all over or just in patches.

Wendiwithani

Same here...my UMX was last December and I am still completely numb under the arm, as well as a large area on my chest and back.

Kicks

I had UMX in Oct '09 - still have some numbness under arm. Isn't an issue at all. Only 'notice' it at all when putting on stick/roll-on deordant.

HeidiMcC

I had BMX 2 weeks ago.

I have numbness across my chest and down the ribs on both sides. On the left I also have numbness through my armpit, shoulder blade and down the back of my arm to my elbow. Occasionally it continues down through my pinky.

I also have some cording on right side and intense cording on left side. Along with pain in my right rib area and left side from ribs to elbow. The pain may be also from the cording and drain placement.

My BS was amazing and told me lots of information before each of my 3 surgeries so far. She did say I would have numbness some of which may be permanent.

Wicked

Heidi, I have that shoulder blade numbness too, but only on the left (lymph node) side. I have no rib numbness but some on my upper chest. Had my BMX one day before you.

HeidiMcC

yes. The worst of it is on the cancer/lymph node side. Aka my left side. The rib pain has gotten better as time goes on. First oncologist appointment tomorrow. Up until now I have only seen my BS and reconstructive surgeon

Melinda0628

Hi there

I am 4 days Post Op and still very numb. Spoke to my BS today and he said that I will be numb for a while. I won't see my onco until 12/16.

Kali44

Hello 😊

I am hoping that this thread will continue on because I need to hear from everyone how they heal as we go along. I too, unfortunately have joined this group, meaning numbness, and very thankful to hear from others. I had my mastectomy in June and I am still very numb. Like so many of you.... under the arm pit, chest and some areas on the arm of affected side and all the way down the inner arm. This totally sux like $hit!!!!!!!

I am sooooo Frickin angry I could scream....what has happened to my life!!! I really thought I was handling things well but I am just Mad! I hate my life now. I feel lost and soooo frustrated. What has happened??? If I hear/read.....well...u got cancer because u drank or because u didn't eat healthy enough.... I think I will commit myself to the loony bin 😐 I keep trying to tell myself it can be worse but you know What? This is my worse. I have my babies to take care of....all under the age of 13..... ahhhhh 😤 Yes I appreciate being alive but quality of life is also super important as well.

Don't even get me started on the sex part of this amazing deal.... I feel tired and like I don'thave the energy, I use to have, to fight. I feel like between diagnosis, tests, chemo, surgery and radiation.... I am weary. Simple as that..... I just don't have that fight in me anymore. Plus, I am waiting for recon, BTW, and I am not looking to getting it done...hate having one boob but not excited about being cut up again. Not looking forward to the recovery, which I hear is not easy to go through. Can I have a Drink? Oh right.... I shouldn't be drinking or at least not much 🤐

I thank you all for listening because no know else really understands plus I cannot confide in anyone anyway because I feel that very few can keep your secrets.

What has happened? 😕😔

Mariangel43

Kali, normally I move on other discussion boards and just by chance I got in here. No. you are not alone. We all have felt frustrated and in a certain way pissed of of having cancer. Cancer is still a powerful bad word and can create in all of us fear, apprehension, low expectations and many undesirable feelings. I was diagnosed on May 4 after the biopsy on April 28. But I received the news three weeks later because the surgeon didn't call me. I was mad at him but madness went off when he told me I had cancer. All my dreams of retirement went off in a puff. Now a new mode of living came with surgeries, drugs, physicians' visits, and a lot of outgoing money. The first time I heard him I said, Now what? And asked him, what's the plan? He told me what he wanted to do and since it was too overwhelming, I then entered a state of shock and trembled. I ran away from that doc.

I was confused and disoriented between this doc and who will come next. I didn't want to get a new doc with godlike pretensions and lack of sensitivity because this guy was nonsensitive and uncaring. In the meantime I could not cry, this wasn't the right time. I went to another surgeon BS #1. He was sweet. Then a MO#1 MO# 2, then the RO #1 and RO #2. Then the PS. I decided for BS #1, MO #1, RO #2, PS. They are quite good and sensitive. They ask and when I say NO, they respect my decisions. They do not agree with me but they respect me. I joke with them because I can trust them. That eased my journey. I told my friends too to respect my decisions even when they might not agree with me. I didn't want their interference or judgmental attitudes. I needed their affection and presence to move on. I cried inside myself. Your cry of anguish is part of the cries of many others, like you and me. We were forced to enter the cancer boat for some unknown reason and since we are here, we must deal with the circumstances.

I do want to live and to do so, I need to make some changes in my life. Stress and food are the only two things that can contribute to my cancer; I need to make changes in both areas. Besides breast cancer, I have a great possibility of developing colon cancer. So I must be vigilant and responsible with my body. Someone (a cancer patient) told me that all cancer patients were pushed into a non desired new life and they all feel frustrated and powerless to a certain degree.

We are here to help you with your burden and to make your journey easier. We know how you feel and we care for you, Kali. Just do not lose hope. You will have quality of life and you will talk to your physicians about it, what you want, wish, need, and expect from them and from you. And don't feel compelled to do everything they ask of you. If you don't agree with it or cannot comply with it now because of your children, just say it.

Expecting to hear from you soon, sweet dreams.

tlgio17

Hi Kali44, I am only two weeks out and still pending all the other fun treatment stuff (not) and everything you said felt like what is going on in my head. Ugh.

I wake up every an wishing it was all a big nightmare but nope still one boob healing and numb, treatment to come and eventually more surgery for recon. Loooong road ahead and not always easy to stay positive about it all.

Anyways just wanted to pipe in, feeling the same and nice to have this forum to connect.

Traci

MinusTwo

Scared - I'm surprised that numbness was not discussed before your surgery. I have never gotten feeling back over my reconstructed breasts, but then I was told not to expect much. And after Lymph Node Dissection, I now have numbness on the under side of my arm and in my arm pit. Once those nerves are cut it is unlikely that feeling will return. Sorry you didn't know ahead of time.

Artista928

Have a ton of numbness with occasional pain and burning 16 mo po. Docs say it's normal. Some get better, some don't. It wasn't spelled out to me but I figured nerves with be severed. And it wouldn't have changed my mind anyway.

Logang

The chest numbness doesn't bother me much, but the armpit, underside of my affected arm, and around my back took some getting used to. It did take awhile, but it did improve. Not as much of my arm or back is numb now. I did begin my recon on 11/3 with expanders. I have noticed my fills tend to flare up my right arm sensations, but so far no swelling. I know I'm at risk for lymphedema because I had 31 nodes removed.

barbe1958

I am 8 years out and still numb with no recon. When the nerves start to regenerate you will get zaps that are quite annoying but is a good sign. I have to be very careful shaving my underarm to make sure I'm not hurting myself! It helped that I was number when they had to drain a seroma though.

I did ask my surgeon where all those wonderful nerves went when they were cut and he said to have fun looking for them. Still haven't found them after all these years.

Watch for LE! I had an incision revision as it looked like too much skin was left and after the 2nd surgery it looked the same due to LE!

Kali44

Hello to all you wonderful ladies,

I want to say Thank you for your replies, I so appreciate it. unfortunately, you guys caught me on a not so good night and hence the venting. Ahhhhhhh..... you know it's just that way some days/moments. I read a thread recently where the person was asking why they felt stronger during treatment and not so much now. It is so strange that I feel exactly the same way....I was intrigued because sometimes u wonder if something is wrong with you when feel a certain way and then it truly brings so much comfort when you realize you are not alone.

Thankful for the openness of others and the generosity of everyone on this board, in sharing their experiences. Offering their support, love and sometimes just a kind word.

I was staying so positive and I felt I was handling everything really well, certainly better than I feel at times now. I suppose when u are going through treatment there is hope that things will get better after recovery and then quite suddenly, reality hits and you are left dealing with the fact that some things, in some cases many, aren't going to get better. And you are left feeling lost and trying to live with the new 'normal'..... whatever that means..... Right?

For what it is worth I am happy to be alive, just wished our quality of life, after all of the stuff we've had to go through would be better. My husband said to me recently, everything is so different. And he has been a warrior during this $hit called cancer. I feel for him as we both try to recover, grieving the life we had before this damn diagnosis but fighting to keep our marriage working in a different way and also being thankful that we felt we were in the best hands possible and that I am still here.

I say THANK YOU again to you all. It truly helps to feel like you're not alone. So many others, unfortunate as that is, understand your journey in such a special way that no one you know does 🙄 Wishing you all a great night and a better day tomorrow for us all 😊

StaceySue2U

Kali, I'm glad you vented.

I, too, have really really been trying hard to be positive and suddenly I just feel DONE with positivity. Like - where has it got me, seriously? Yeah I'm glad to be alive but my entire life has been permanently changed and I'm just so tired of trying to be strong and not complain.

I keep thinking "Where's the reward?" "Don't I get a huge reward for being strong?" But nope - I didn't win any lottery to make up for the crap I've had to go through. This is not AT ALL like a Hallmark movie!! Where's the good stuff that is supposed to come from the bad???? During the initial cancer battle, I got my strength from hope and looking on the bright side and now I feel like I was just being delusional.

And the new "normal" is having numbness under my arms and on my back and these new fake boobs without nipples and no sensation and loss of my sex life.

This is a temporary mood and I'll eventually be my positive old self....I think. I don't know, though. Maybe all of that positivity was just not realistic.

barbe1958

Women are typically strong during a crisis and then we break down when it's over. That accounts for a lot of the "why". As for the new normal, you have lost your innocence. You have actually looked death in the eye and for some of us, we have seen the bullet that will kill us. That is a lot to deal with.

We also have to grieve and we all know those stages. We have to grieve the loss of our good health, the loss of our innocence and for some of us, the loss of our breasts themselves.

We are told to stay positive. Why? That is only so it's easier for others to deal with us. No one knows how to handle our fear. They say that everything will be okay. But hey! They said that before our biopsy came back malignant so that didn't work.

We have the right to cry and rant and rave and feel sorry for ourselves. As long as we don't drag others down with us and it's a pity party for one it is healthy.

But always remember- we are not alone. There are tens of thousands of women and men who have blazed the trail ahead of us. Lest we forget.

Denise-G

I am 5 years out from UMX - still numb under arm and in node area. It got better

but never went away. Still cannot shave my underarm with a razor.

The things they don't tell you!!

StaceySue2U

Thank you, Denise. You're right. We HAVE looked death in the eye and many of us have seen the bullet and we're all changed because of it.

It's good to know others have such ups and downs of mood - alternating between being strong for everybody else and breaking down and wanting to be held and taken care of. Crying about the smallest little thing and not crying about the really big things. I mean, it's not good that others feel that way but it sure makes me feel less crazy to know I'm not the only one.

Yesterday I was a basket case. It was the biggest pity party I've had for myself since my bilateral mastectomy. Today DH insisted that I go to the Soma store for the first time ever. $300 later I feel much better LOL. This was my first time buying real bras or any new clothes at all since my mastectomy and reconstruction. It felt so good to put on REAL bras, not sports bras. Who knew that having "the girls" lifted and separated and held in separate compartments could make such a difference in a woman's mood?! I never realized how shallow I actually am

barbe1958

Umm. It was me that talks about bullets and pity parties but I'm glad you liked it.

Retail therapy is always an effective method!

MinusTwo

Stacey - this site is always a safe place to vent!!!

tennischick888

My surgeon told me that it takes 9 months to a year to see where you will "end up" in terms of regaining feeling. I am 10 weeks post BMX and thankfully, the numbness greatly improved from where I started. The first couple weeks after surgery, I was freaking out and really had a difficult time with the numbness on my affected side...especially in my arm pit and the underside of arms. Although I still have some numbness, I have decided it's better than having pain.

Kali44

Staceysue I feel the same way..... tired of being positive and strong for everyone and u feel u cannot smile one more smile or when someone wants to know how u r doing....now that u r done.....done......?.?? Can I say that I am really done? I don't know.... I hope so but I am not sure...but u know when people ask u how u r doing.... you know they don't really want to know, because where would they go from there, they want you to say that you are doing well....kwim. No one really wants to know. Really really know....

So I think we are also put in a situation where we have no other choice but to be 'positive' when it is sometimes the last thing we feel like doing. If u only make the mistake and tell the truth, like well it is tough and it sux, they are then quick to make sure to tell you.... but at least u r done with treatment or at least the surgery has been completed.....😠😠😠

Here u r now dying to say what u now really feel but instead u feel the need to appease them and smile. You do this because you want to avoid the way the conversation will go, so to end it quickly is best. Which btw makes u even more frustrated because you feel you cannot really say how you feel without getting . ...well you look good etc etc or something that will make you 'feel better'. Not! And yes I know, we all know, it is coming from a good place but it is what it is....and you feel what you feel no matter. Hence the reason why I told as few people as possible. Plus some people can be a little too emotional and I cannot deal with that aspect at all.

Anyway, it sounds like you had a nice time taking care of yourself Stacey....yay you 😊 That was super thoughtful of your hubby 🙄 and btw you are not shallow for wanting some normalcy in your life. I want that too. We all do. And to people who haven't been down this journey, it may seem that way but us we understand.

Thx for saying that barbe.... just read ur reply and see that we ended up saying the same stuff about others and what they need us to say. I am too trying to be as I was before...more positive person. I feel like I am in a fight trying to hold on to the good. Trying to look on the brighter side. But I feel like my days are more about trying to convince myself that I am not dying inside because some of these side effects can truly get you down. I am trying not to go down the laundry list of things that are no longer the same for me and my family. I think if I do focus on it I will get depressed for sure, since I have had my moments of feeling very very low.

Traci I hear you. I did the trial during rads and they give you questionnaires to fill out and they would ask...have u accepted your diagnosis and I would very confidently say yes but I when I sit for a moment now and think about it I realize that I haven't. I am still waiting for someone to wake me up because this has got to be a nigtmare....yes! You have hit the nail on the head for sure. We are here to share and hopefully help you in some way as you too go along.

I feel like I almost pretend it isn't as $hitty as it really is so I can get up to fight another day. And there you have it....the real truth. And you know what???? It feels so good to say it out loud and not to feel the need to hide it. Who needs a therapist. This board is so much better. Unless ur your therapist has gone through this journey, they themselves wouldn't get it like you ladies ☺

Wishing us all a good night and a better day tomorrow ☺ we deserve it and much much more.....

barbe1958

I am one of the most happy and positive person I know but I don't view he world through rose coloured glasses. If someone says how are you I ask if they really want to know. It's kind of fun when they say Sure, tell me and I can say well, I'm stage IV now which means terminal and I smile at them. They always think I'm kidding.

You can still be positive and still be angry. That's healthy. Don't let anyone take away your right to be pissed. We have a crappy load to carry.

Mariangel43

I have read all your posts and I feel blessed to be here. I agree with everyone of you. Since this is the venting room I need to add that recon is not what I expected. I asked for reduction of left breast to size B and the PS didn't do it; he just lifted it. I felt deceived. He said the left breast would decrease in size since it was swollen. It's been two weeks and the size is the same. I didn't fight him but I made him feel my deception. I know that both breasts won't be the same, so I am not expecting that. Now I have a right fake boob with nipple and areola looking to the right side because the position of the implant is not right or it is too small. Well, I made him feel my deception. He is a good man and he is in the process of justifying fat from abdomen to fill the void in right breast. I have to have my sonomammography on Feb to check for any lump. If for any chance I develop cancer on left, I will ask to have both breasts removed and I'll try to live a happy life without boobs.

Nothing is normal nor it will turn out same as before. I don't hate what has happened but don't like it either.

As for the people who ask you how are you just for the sake of it, I tell them the truth to discourage them to ask again. When I want to be bad, I tell them how much I suffer and leave. Thanks God I am bitchy rarely.

I did use the razor in the armpits. Can't I do it? Why? I am very careful when I do it.

Did you really spend $300 in bras? One or three? I cannot dare to buy anything because my right breast is deformed. I just bought pants and loose blouses to cover the discrepancies. I have to leave now cause I need to clean the wounds. Love you, Happy holidays.

Maria

MTwoman

I remember the numbness, and shaving under my arm was just totally WEIRD for a long time. I'm now 13 years out from my last surgery (nipple reconstruction) and I do have my feeling back in the skin over my reconstruction as well as in my armpit - although I'm pretty sure it took longer than a year. I tried not to focus on it, and one day I realized it was just gone. Wishing you all good recoveries!

StaceySue2U

Looks like I should have apologized a month ago, Barbe! Sorry about that - didn't come back on here until today. I didn't realize you were stage IV. Where are your mets? How are you feeling physically and emotionally?

Regarding the numbness - I'm almost a year post mastectomy already (can it be?) and just this past week I really noticed feeling returning to the skin over my implants. Such a nice thing!

Marian I got four bras and two pairs of jammies and I'm STILL loving them! I got real bras - with padding and underwires in 3 of them. Two are very pretty and two are every day bras (one black and one nude). I feel so much more human now that they're separated and not rubbing together when I bend forward.

It's been a little difficult lately at work. I'm a home health RN and one of my patients, who had the same type and grade of cancer as I had, now likely has bone mets after being cancer free for 11 years. Plus she was having bad aches and pains and was blaming it on her Letrozole that she had just been put back on. I remembered that I'd had bad pain and fevers and three hospitalizations for what they thought was infection. After that I went to my oncologist and told him I wanted to go off my letrozole and he took me off the Femara instead and all the aches and pains and frequent fevers went away. So I told my patient what happened to me and reassured her that her doctor was probably right when he told her that her side effects were from her Boniva and told her to stay on her Letrozole. After that I went for a follow up visit with my oncologist and he told me he wants to start me on Reclast infusions since I couldn't tolerate the Femara. He said I could do the Boniva injections (weekly or is it monthly?) and frequently deal with the side effects or just do the Reclast once a year and get the side effects out of the way. I'm having the first Reclast infusion on Feb 7 and already called in sick for work for the 8th and 9th.

Anyway - my patient that might have the bone mets is doing the "I'm fine" thing. She says she's at peace with it and "when it's my time to go, it's my time to go." But she's scared, I can tell, and she doesn't really want to talk to me about it at all. She and I are different in so many ways, and just sharing breast cancer isn't enough to make her want to open up to me. She's about 85 years old and black, mother of 9 children, and worked as a share cropper while raising her kids. She's not real trusting of white people and, in addition to that, she's extremely modest. She's very religious and I think she thinks it's immoral to get reconstruction. Fortunately she has a long-standing relationship with one of the LPNs at our agency so the LPN and I are "sharing" the patient. I just go once a month for supervisory visits and the LPN sees her the rest of the time. She called about the back pain she was having after her Boniva and thought it was caused by cancer spreading to her back. She has very small scattered lesions in her bones and they're so small that they can not be biopsied. So now every ache and pain could be the cancer. I so totally understand her fear and, even so, I don't know what to say to her. It was kind of neat - I watched the inauguration with her while doing her visit.

I'm taking care of quite a few ladies with stage IV cancer and it's actually helping my fears and giving me more peace, oddly enough. None of them have a lot of physical suffering and most are emotionally at peace, and I see that it's not really as scary as I thought it was. Nobody's suffering much.

Enough rambling I guess.