DIEP 2011

KatheW - I don't think 3 surgeries are typical.  I just think I had minimal fat to work with at the abdomen site and the right side needed more work than the left.  Fat grafting can lose up to 40% of what is injected, so several surgeries are sometimes necessary.   

My pain has lessened with each surgery.  It was almost nothing this last time (except how I felt after anesthesia).  I had bruising, but, being a klutz by nature, I'm used to bruises.  

My PS told me on Wed that I cannot keep my nipples when I have my BMX and DIEP.  I had been hoping to keep them but was also prepared not to so I am really OK with it.  BUT DH is having a really hard time with it.  The reconstructed boobs he is fine with but for some reason the whole nipple thing he just cannot grasp.  He even said you seem to be fine with it which its good but I have a ways to go with it. Has anyone else DH or significant other had a hard time with this.  Of course even if I had a BMX no reconstruction he would love me anyway. I am glad that he is being honest about his feelings but I really don't know how to help him feel better about it.  Maybe he just has to work through it and I just did that along the way.  I think he was in denial thinking I was going to keep them all along.

bdavis I told him if I could not keep the one I did not want to keep the other.  I want them to be the same and I actually have fairly large nipples for such small breast.  I just don't see how they could match it and me be happy with it.

Kay, I am not sure what Level 2 node dissection means but I can tell you that they took 11 nodes from my right side when I was diagnosed last year.  The back of my upper arm, my armpit and my breast is still totally numb.  There is no sensation there at all.  I don't even feel pressure I am so numb.  I have gotten pretty much full range of motion in that arm.  Now the other arm is 6 weeks and 2 days post-DIEP and reconstruction.  I definitely don't have full range of motion in that arm.  I don't think I could put my arm over my head and leave it there for a long period of time.  I am wondering too if what you are describing is a mild case of LE?  I wonder if your PT is familiar with LE and could help you recognize whether you are having signs or not?  Please keep us posted on how you do!

Sherry, I really empathize with you with the nipple dilemma.  I didn't have a choice.  My initial tumor was so large that I had a radical mastectomy.  They didn't save my nipple or much skin, tissue or anything else.  My DH hasn't said very much about the loss of my nipples but he really doesn't have to.  I don't want to sound like I am being critical of him, because he has been my rock through this past year, but I can tell how he feels by the way he treats me.  It's almost like my lack of nipples makes him scared to touch me.  Like he doesn't know what to do with his hands during ummmm, intimate moments.   You may have read my post earlier this week that I had ordered rub on nipples online.  I was so excited to get them in.  I checked my mail every day waiting on them.  When they finally came (I had them delivered to my office) I rushed right home and went straight to the bathroom to try them out.  I read all of the directions and got ready to put them on.  I couldn't bring myself to do it.  After being so excited, I sat on my toilet and broke out in tears.  I was really shocked by my reaction.  The rub on nipples are still laying on my bathroom counter.  I think that there are some things that are very personal and intimate and it takes a while to adjust to having to sacrifice those parts to be healthy.  I am glad you and your DH can talk openly about it and I hope that you are both able to make peace with your new normal.  I know I feel so blessed that I am able to post here and share my thoughts and feelings with people who understand.

Susan

Susan thanks so much at least I know my DH is not the only one that this is making an impact on.  He has been so supportive of everything and as said all along he will stand by any decision I make.  He respects that it is my body but I guess when you have been married as long as we have we claim ownership of each others body.  I know I feel that way about DH.  Anyway I know we will work through it but it is kinda nice to know we are aren't the only ones dealing with it.  And I know what you mean about the hands thing.  I have had so much pain in my breast in the last year that DH is afraid to touch the bad boob.  He is never sure when it is hurting or when it is not.

Susan. I had the exact same reaction. My stage 2 is in 2 weeks and I wanted to be able to feel some control over how my nipples will be -- size, location, etc. My breasts are so different now, more like they were 30 years ago, from the way they were just prior to MXS so I don't think nipples just like the ones I lost will be right. I was about to have a weekend with my 2 best girlfriends and wanted them to help. I ordered some stick on silicone nipples in different sizes, and, like you, was sooo excited. Kept checking for them. When they came, same deal... dropped everything and ran to the bathroom and stuck them on. Somehow, I was expecting to see something in the mirror that I would love. Id heard how the eye is fooled into not seeing the MX scar when there is a nipple. Instead, I saw reconstructed breasts with big horizontal scars and awful fake nipples stuck on. I felt so sad and let down. I shoved them in the drawer and can not bring myself to even look at them again. I guess I was expecting that nipples -- even stick on-- would make everything look just right again. I was right there where you were...sitting on the toilet in tears. Every now and then we have to acknowledge our losses. And I agree, it helps so much to share this with women who truly understand.

dontworrybehappy--you might be feeling pain from a rib cartilage resection. I'm not exactly sure how it works but it has something to do with accessing blood vessels in the chest wall.  I've felt that pain along my cleavage area and under the breast as well. 

SAMayo...... the swelling hasq finally gone down in my upper torso, however, when i try to eat like i did before the surgery, that area distends like its going to burst, i now know what people with gastric bybass must feel like, your eyes see a food portion that used to be nothing before the surgery and now it becomes an evening of regret because of gas and pain. now heres the pants thing. i have to wear a uniform for my job. i go back to work on oct 1. i have a pair of navy blue "cheater" pants that have stretch in them. they are not my official uniform pants, which are high waisted "mom" jeans style. the other day i put on some lower rise shorts, but the problem is the waistband sits right on the incision. so heres what i did. i found what is called "a belly belt" they are at target for preggers, they come in black and beige and they are soft and built like an old fashioned tube top. they can be used for pregnant ladies when they cant button their pants when they start to show. i could button my shorts but theyare the the lowest rise thing i own. ii swear by the belly belt for its multiple uses, check it out. but to answer. your question, no i cant really fit my old pants yet. its still 100 degrees here in houston. its like they had to move all my major organs above my belly button and cram them together as tight and close as possible in order to give me my crazy flat stomach and make that long ass incision i refer to as my "worm" its a worm all along the front and when it gets to the sides it looks like pie crust. i always make people feel how hard my torso is, they think its something i did and i tell them no its from everthing that was down south pushed up north.



thank you jeskachi.....i seem to handle things easier when there are names and explanations for them, that really helped. even if it were phantom pain i could except that.

back to the nipple discussion. for anyone freaking out about the reconstructed nipple thing, go look at the before and after pictures on breastcenter.com at the amazing results of the 3d nipple tats or the "pop ups" where the nipple is made from a skate flap with ear cartlage inside and tatto areola. if its a visual thing for your husband during "inky dinky" get a sexy see thru bra and have the breast prosthetics with nipples on them and keep the light down low. make it a new kind of roll play, wear a long different color wig and "f..." like a porn star. tell him your sorry you have to "wean" him off the tit. i told my husband, "i got your new nipple" as i pointed down south to the little man in the boat, and he said, "oh i see, its a two for one special". i dont have recon nipples yet, so in the meantime, my hubby and i go to the sex shops and buy all kinds of cute and glittery pasties and the foreplay starts there. see thru bras and lingerie are very sexy just leave on the bra part. men have been using nipples that are not real for years in the form of magazines and video. things are very different now for us and it calls for new and imaginatiive ways to make the same old same old different.

and my pants are falling down... but think its mostlyy because of hip flaps... no butt fat to keep them up.

I had a DIEP done by Dr Lee and Klein at MD Anderson Cancer Center Orlando.  They were a fabulous team that treated me very well.  They perform over 300 DIEPs a year so they are the busiest DIEP practice in Florida.  Good Luck!

thanks for the affirmation treesprite. i forgot to mention that when i first told my husband that i wouldnt have nipples after the diep his response was classic, he sung to me in a deep voice from a pop song from years ago called, she's a barbie girl......he sang, "come on barbie lets go party". right then and there i knew that i have a really great guy. he told me as long as i am alive thats all he cares about. my husband said i should ask the ps to install those machine guns in my jubblies like when brittany spears opened fire in one of the austin powers movie. that would be great except im a flight attendant and would never get through security. lol.

I had mine 5 weeks ago and they look good, just still feeling a stretch. Unfortunaley they found breast cancer again had lumpectomies 18 and 5 years ago and this one was elective, but  no gol. My deep margins were positvie so i might need a radical

But go for it

My husband does not want to see any of my scars... so needless to say, no intimate moments here... Not sure what the next step is.

I still have drains too... so I think that adds to the problem... I am ok to show my aba nd butt scars to him, when he is ready, but to be honest, I'd rather show him my breasts when they are done... Having no nipple on left and a patchwork on right, and still quite firmand swollen, I think its best to wait for finished product, tattoos included