I miss having feeling in my boobs!!!!

I can totally relate! I had a bilateral mastectomy on November 5th of this year with immediate reconstruction with TE.  I was having a routine mammogram because I was turning 40. I had to have a mastectomy on the right side because of over 3cm of high grade DCIS and am small chested. I also had a small invasive tumor along with the DCIS.  The doctor found something suspicious on the left side and because of that I decided to go with a bilateral mastectomy. I am also married and have 3 children.

 I feel like now that no one prepares you for the emotionally side of this journey. I feel like the doctors could go a better job of preparing you or have you go to counseling first. Like you, I was so focused on getting through the diagnosis and getting the cancer out and researching reconstruction taht I didn't really focus on the emotional part. It wasn't till after the surgery that I felt the full impact of loosing my breasts.It is really difficult and I struggle with it every day. I miss the sensation so much!! I have been going to a support group and am thinking about seeing a therapist also. I feel kind of stuck and not sure how to get past the fact that my breasts are gone and I have no sensation. I don't have any words of wisdom to help you just that you are not alone and I feel exactly the same way. I was hoping that time would help but I'm not sure. I think that is what makes having breast cancer so hard is that there is such a huge psychological component that effects us. 

I too had a bilateral mast.  and was very focused on fixing the situation and not realizing how I would feel.  I am having the expander cups removed and the final surgery done real soon here, but I think about it everyday.....that they are gone.  You know the feeling when someone rubs against you or you hit a closet door....yuck.  I am having a hard time with that part of the whole thing. I am glad you posted this because I have been thinking about this a lot lately.  Nothing we can do about it, but nice to vent a little to others who know what it is like.

Thanks,

Balsie~

Like Barbie, I had a bilateral mast without reconstruction. Like you, 3girls4me and others, I miss having nipple and breast sensations. Whether or not you choose to have reconstruction having a mnastectomy just plain sucks!

3girls, yep miss it.  Knew I would, had no choice, and knew it would be an issue.  PS wanted to adjust the other side to match and I said no, I wasn't chancing any loss of sensation.  PS said they'd never seen anyone so worried about nipple sensation.  I said "B.S., you've just never met anyone willing to tell you how important it was to them."  I know there are many who it isn't as important to, or for whom it isn't as important as other parts of the decision.  However, to some of us it is an issue, and a big one.  I'm with you, feel the same and you're not alone.  I miss the breast that is gone every day. 

I totally understand.  I miss it too.  It sucks.  I went to a counselor this summer because I was so sad.  Even with reconstruction DH and I still feel like my real breast are gone.  I am only 36 and my sex life is basically over between having no breasts and now no estrogen.  I don't think it will ever be the same.  I don't regret it because I would worry too much if I had kept them.  I do struggle with bitterness about this.

I am sorry all of you are missing your breasts too. 

I really wish there was some way to reach out to younger women who have breast/body image issues; they don't know how lucky they are. I have to admit, I didn't ever really appreciate my breasts (except while breast feeding), they were small, not symmetrical and after babies, they headed south. I guess it's true - you never really appreciate what you've got till its gone. I think loosing my breasts has had a big impact on my sex life, I just don't feel sexy anymore. It DOES suck!

I didn't appreciate mine after kids.  They were a perfect perky size B before kids.  After kids and breast feeding very saggy, but I didn't want to have surgery to fix them because I was scared of surgery.  At least they had feeling in them.

What I hate is when people say "You get to have new boobs and they will be forever perky.  Lucky you"  I know they don't understand, and they aren't trying to be insensitive.  They are just trying to make us feel better, but I want to scream I AM NOT LUCKY TO HAVE NUMB AND FAKE BREAST.  I AM NOT LUCKY TO HAVE GONE THROUGH CHEMO, RADIATION, MULTIPLE SURGERIES JUST TO HAVE PERKY BREAST.  NOT TO MENTION THE MUTLIPLE SCARS, FEELING UGLY AND DEFORMED, ETC. 

Sorry.  The anger sometimes comes out. 

totally agree. The bv11$h!+ about perky new boobs and/or flat stomach (if you had a DIEP) is insensitive. The plastic surgeons and their staff are the ones selling the crap out of the "bonus" of the reconstruction. They are insensitive clods about this. I asked about the loss of sensation and was told it was inevitable (although a lucky few do get some sort of sensation back). Surgeons just shrugged - oh well - sucks to be you.

jperry - go ahead and be angry. you have every right.

Your posts have brought tears to my eyes.   I had my double mx in mid-November and am at the beginning of the expansion process.  I hate how much this all hurts and I sure don't like how I look in the mirror.  My only advice to those of you feeling unsexy is to go have sex with your husband or your partner (or even someone else, as Susan Love mentions in her book!!!!).  Sex is sure different without breasts, but it can still be very fun and very good.  We owe it to ourselves not to lose that part of our life.  

Still, I agree, it's nice to vent.  I always have to be so upbeat to my family and friends.  What a godsend this website is!  Best wishes to you all... 

Thanks for articulating what some of us are just a little too shy to admit.  It's been extremely hard for me and I'm also thinking about seeking some BC support systems/etc.  Yeah - we kind of like our own and it's a huge loss.  I've lurked on the "Mojo" thread and would recommend it as a great place to visit - I'm grateful so many people are willing to share and be so open.

I think for the husbands or significant others (who are afraid of losing their wives to BC) it's a loss, but maybe not as much as for us.  My DH didn't want to tell me his opinion on surgery decisions until after I made the decision and then he said he was relieved.  Due to multi-focal nature of it, I didn't have many options and he didn't really want me to risk my life to save the breasts. 

Whoever posted about their BS not getting it about how hard it was to lose them, the plastic surgeon on the show "The Doctors" said something on a recent show that was just so indicative of these male docs, however well meaning.  He said something to the effect that women are often afraid of screenings b/c they're afraid if something's found they might lose the breast, but even if it came to that, reconstruction is amazing today.  It made me laugh b/c it was such a male thing to say - true, the artistry is amazing, but although we may like their fake ones, we loved our real ones!!!  I knew he meant well, but let's face it - no guy is ever going to understand what we're all saying here and thanks for validating the sadness that a lot of us are feeling.   

Neversurrender, It really does suck, but recurrence sucks more.  I knew that if I were to keep my breast I would constantly worry about getting cancer again especially since I was only 34.  I don't regret the bmx, but I still think it is not fair and it sucks.  I am sorry you have to go through this.  It is a big scary desicion, but everyone has to make the desicion that is right for them.  Good luck to you, and I am sorry

I can relate to how you feel.  My exchange was in May of 2009.  I really miss the absence of nipple sensation.  The visual of getting my breast kissed can be stimulating itself but sometimes it makes me think that my nipples (which I got to keep) are attached to a ball instead of a breast.  Weird thoughts..........it all sucks!

I have just started the reconstruction process.  I did not know about the numbness.  I hate it as all of you do.  My surgery was on Dec 15th and I just got the drains taken out. YEAH!!! I took my first bath today and was concerned about getting it wet.  All in all for a sucky situation, my experience has been as positive as it could have been.  My plastic surgeion is wonderful and has kept me very informed about each stage.  To quote skippycris, "it all sucks"

Wow, I'm glad I'm not alone!  I do miss the sensation in my breasts, and I don't really like to have them touched now during intimacy.  My husband has been very supportive of me during the entire process.  That being said, I wouldn't change having this surgery at all!  I have the peace of mind now that I don't need mammos and MRI's every 6 months, unlike my mother and sister.  Yes ladies this does SUCK, but I'll take the lack of sensation over worrying each time I go for a mammo or MRI.

I'm going in Friday January 8th for my exchange surgery.  Can't wait to have softer foobs!

I had a mx on Dec 11. I do miss my leftie and wish I could have it back. It hasn't been easy and I still cry sometimes when I look at myself. BUT, I keep reminding myself that the cancer has been removed and that's so much more important than hanging on to a breast that I can have replaced at some point in the future.