I miss having feeling in my boobs!!!!

I just wanted to add some reassurance to neversurrender and hornesemail in light of what everyone's articulated is a terrible loss.  I had two separate mx when a second new BC was found - now starting over with TE in the latest one found.

On my first BC last spring, I did have the choice (although not recommended b/c of multi-focal) of having a huge lumpectomy.  I met someone who had a lumpectomy, rads, chemo in her 40's (I'm also in my 40s).  She had good and appropriate treatment, even with surgeon going back to make sure clean margins, rads, chemo, etc.  Her prognosis was great, but 12 years later it showed up in mets.  Good news is that she's been doing great for many years with consistent and great treatments and has a good life - BUT - she told me sometimes she could kick herself for just not having the mastectomy.  This story helped me make the decision - although no one can every know if that would or would not have prevented recurrance and mets for her.  I decided not to take the chance.

We all know there are no guarantees no matter what surgery we chose, and the grief and loss is so real and so hard - but I would never want to discourage or scare anyone from making what they (and their docs) feel is the most prudent decision to rid themselves of the disease.  I have a wonderful husband of over two decades who loves me unconditionally and kids I need to raise - sounds like a lot of others are in similar situations. And as far as worrying about waking up and looking - if you have a great PS (like I do), you'll be pleasantly surprised.  My first time I woke up and really had something significant there - it looked pretty good, made me happy and boosted my confidence and determination to get better.   This has been such a helpful board for me - I've really needed this lately and hope in some small way my posts help too - all the best to those facing surgery and the rest of us working throught the emotions.  Hugs and prayers. 

Kathy

Thanks for your post.  I just wish I had found this site before my bi-lat MX....then I would have known what other women are feeling or have experienced in this process.  I went into it blind.  I know so much more now and the most important thing I have learned is that we are all different.  We come here to vent, to cry and to support each other. 

When I woke up from my Bi-lat MX and immediate LD flap recon I was pleasantly surprised that they look so good.  No stitches, bruising or bleeding.  A week later when my sister came from out of town and I showed her my recon, she said "I thought you had them removed"...they looked so good....

My DH was very supportive during all my surgeries.  He just cannot pretend that they are real and treat them as such...I can understand that.....our life has changed and I have to accept the new and make the best of it.

:-)

Hi ladies -

Thanks to everyone who has shared their stories.  I've been recently diagnosed with IDC and I'm planning to have a bilateral mastectomy as soon as possible.  The decision to have the mastectomy was a no-brainer for me, but the recon is a whole other story...  I've been leaning heavily toward no recon, and hearing how strange/uncomfrotable it feels to have numb breasts is just another thing to add to the list of cons.  I know there will still be numbness, but I imagine it would be less noticeable if it's just a numb flat chest versus numb breasts.  Is there anyone here who opted out of recon and can give me feedback?

And hornsemail - I can totally relate to your post.  I am single, but I started dating someone right before I found the lump.  He has been really supportive so far, but I have been kind of keeping my distance.  The other day we were having a very open and honest conversation on-line, which was what we needed.  He gently mentioned that he really enjoyed my breasts and was hoping for one last "interaction" before they were gone.  Well, I just started sobbing - I wasn't expecting that reaction at all!  I told him that it would be too difficult for me to do that, that all I'd be thinking is "This is the last time this is ever going to happen" and that I would be a wreck.  He was very understanding, which was great, but now I worry that I'm going to look back on it and wish I had had one last hurrah...  It's just so much more complicated because this relationship is new and I have no idea where it's going to lead.  It's almost like giving up your virginity - I don't want to do it with the wrong guy and have to live with that memory.  Tough decision...

Lisa

Don't know if I've already said this here, but doesn't hurt to repeat. I had a breast reduction about 6 years ago and had GORGEOUS breasts for a 50 year old last year! They never really felt like mine again though. It took over a year for my left nipple to regain sensation and I wondered the whole time if it ever would.

When I lost them to cancer I had no intention of reconstruction and I haven't regretted it for one second. I have a beautiful butterfly tattoo picked out, it was very important to me, but I had to wait a year. Now I think I want a new sofa instead! ehehehhehee

Interesting how one's priorities change.....

hornsemail

You have made me cry again....so thrilled that you got through "it" without crying.  I am praying that your lymph nodes will be negative.also genetics testing.....NO CHEMO FOR YOU....you are a very big winner....((((((((((hugs))))))))))

barbe....hornsemail made me cry and then you made me smile....that could be a tough decision....sofa? tattoo?  sofa?  tattoo?  I think I would go with the sofa LOL

I just love these sites and the people on them - the greatest thing is that some of us can educate about reconstruction and also others can educate about not having recon and we can all support each other's decisions, while agreeing we'd rather have not joined the club to begin with!  And we're all praying positively for NO NODES for Hornsemail! 

Hornsemail I wish you the best. I am debating if I will do both. I need the left one done and I am opting for both. You will be in my thoughts and prayers.

I, like the rest of you, am happy to have survived and be alive, but I hate my boob. I had the mast and rads on the one side, so not only do I have no feeling, it looks nothing like the "real" one that had a lift and implant. I think you could hammer a nail in my boob and I wouldn't feel it. But the real question is, would the nail penetrate the hard radiated skin? I would rather have my 36 long boobs back!

Candi

I also have the LD flaps.  I have feeling except for the flaps and some underarm numbness.  I do miss the sensation of the nipples.  It has been 22 months since I heard the word cancer for the 2nd time in my 56 yrs.  Yours description of what has been done to your body washes over you like a tsunami is a very good description.  I posted about my feelings of inner anger that finally exploded in a meltdown for me.  The topic is "nearing end of recon, what now?".....It was good to find out that I am not alone and these feelings are normal.  I wish I had talked about my feelings before now and maybe I would not have held it all in.

take care

Linda

Thanks Carole

I already feel like a new person.  I am even sleeping better.  Before my meltdown I dreaded going to bed because I knew I would be waking every 2 hrs and looking at the clock wishing it was time to get up.  Now I am waking maybe 1 or 2 times and going right back to sleep and in the mornings I have been staying in bed a little longer because the bed just feels so good.....a big change for me....thanks for your prayers

take care

Linda

hi dianenc

l am 6 weeks post-op and mine are rock hard, my PS said that they will soften given time,and l gently stroke my new breasts wth Bio Oil, l did not expect my breast to be this hard but something l have had to accept,

my PS as said it is dead fatty tissues called nacrosis, as we venture down the hurdles we learn more and help others to be aware that this is normal, when l had my BL Diep Recon, l did not have inplants because l had chemo and rads first and was told inplants after rads is not such a good idea, who knows better than a PS, we hav.e to put our faith in these surgeons as they are trying to save our lifes.

l do not regret having re- con but when you know the pit falls it makes you think to go through this op and have a failure which the chances are 5% would be deverstating to have them took off you again, l was one who thought l was going to loose them as l had to return to theatre but l was told it was a 20% of returning back to theatre, but l have been lucky that my PS gave it another shot and have positive results thank goodness,

and l am so gratefull my PS as said there might have to be a few adjustments but they can only be minor hopefully. best of luck to you girls out there and l pray for all of you.

I'm so glad I found this thread I am meeting with surgeon Mon but after testing have decided on bilat mx. Over all of the concerns and losses this has been the hardest one to swallow which at this point I have shared with no one but my husband. He just says he wants his wife... I know I will miss the sensation more than anything else brings tears just to talk about it . I know God will see me through and give me strength maybe that kind of sensation elsewhere   thanks for letting me vent

The loss-of-sensation thing is something I only recently learned about as I'm making my decision to have a mastectomy... I don't understand why sensation is preserved when you have a super-big lumpectomy/reexcision, but it's impossible with a mx?? This is very depressing and is making me lean toward not doing a mx.... (I only have DCIS and I'm thinking that living with the risk of a recurrence rather than the DEFINITE of losing all sensation...)

I had bilateral DIEP 3-1/2 years ago, and have recovered absolutely NO feeling!!  So, you're just lucky to be getting some back!  I miss my boobs and the foreplay.  My husband has NOT touched me since before diagnosis!!  But he claims to be ok with whole thing...in counseling, but he still won't admit whatever it is that bothers him.  He wasn't big on the nipple fondling, but I LOVED it!!