DIEP 2013

Typewriterjenny

Has anyone else here had the diep but no rads or chemo? Curious about that recovery experience.



Gotcha-thanks so much. How are you feeling? Have you started tamoxifen?



Goldie- I know what you mean. I've gotten some looks when I've told people about my pre-cancer reconstruction, and I get the pause and the questions now-" I don't understand why you would put yourself through so much when an implant or a mastectomy is so much faster. It seems like you're tempting fate." Or "well, a tummy tuck shouldn't be what you're concerned with. The main issue is your cancer."- sooo many reactions and responses, but i just had to take a deep breath and realize they just don't have the ability to put themselves in my position. And i always kept in mind, they were never in my position as an adolescent girl- the locker room, my ballet class, being extra nervous about boys, not to mention having to dress in baggy sweatshirts and never feeling comfortable- these we're things they didn't experience. I am a very empathetic person and I've come to realize that a lot of people just plain aren't. Every choice that you make as long as you feel that you are as informed as you can be, is for you the right decision. No regrets. Just forward positivity.



As far as your son, the thought of your breasts as his mother probably makes him feel uncomfortable- haha- so of course it may seem odd to him! i still hate to think of my parents having sex. its weird!!! haha. i'm sure if it were his significant other he may feel otherwise, if he was really honest. Also, I'm sure he doesn't want to have to worry about you being under for so long either, or the more serious recovery and possible complications. Side note, when I got married, my dad wanted to walk me down the aisle, and I was hesitant. He asked me why. And I told him because I think that the "giving me away" idea was very strange. I love my parents very much, even though they drive me crazy a lot!!! But I made it very clear to him that though I am his daughter, I never felt like I "belonged" to him, per se. That feels to me like something you say about property. And, as such, I wasn't going anywhere. And while I would turn to my husband now first for consolation and advice, I would still ALWAYS love him just as much and consult with him. Because I respect and truly do like him a lot! He seemed to like that. And, we danced to father and daughter by Paul Simon. It was a kind of silly dance. No country song and tears for us! No siree! though I go to him less often, it's always for the most important things. I'm sure your son loves you just as much. Think of your relationship as evolving. You want him to be able to be self-sufficient. But also, to come to you for advice and support, and always give you love. )) I hope that helps a little!

damiana9

Typewriterjenny- a tummy tuck isn't what you should be concerned with? wow! That is terrible! The comment I got is 'wow, you are so lucky, the while neighborhood is jealous of your surgery. You are getting the mommy makeover that every woman dreams of' It makes me fume every time I hear it.

Anonymous

Imho.....if 1 in 8 men had to lose their penis to cancer....get it cut off and have the whole area radiated to the point of scarring....and pee through a tube (I am sure that something would be developed that would allow their bladder to eliminate fluid) for the rest of their lives...and there was a 10ish-hour surgery with 6-8 weeks of recovery that could give them a penis BACK (not the same exactly, but close) or an implant option... I am pretty sure there would be no questions asked.



Just sayin....

Anonymous

And when people say I am lucky because I get a tummy tuck paid for by my insurance I know it's because they are probably unhappy about their own tummy (I know I have not liked mine in 17 years! That's a long time)....and they are not connecting it to my prior two years of tx and struggles...I usually call diep my "little bit of icing on my bitter cancer cake"...hell yes, sisters, if there is a little silver lining to all the other nasty crapola I am gonna grab it, with no apologies! TOWANDA!

Anonymous

LMAO...I am feisty this morning ("just another tequila sunrise....")

goldie4040

Thanks for all the postive spin on my son's insensitive statement.  I am sure I will forgive and forget very quickly.  He probably has forgotten the incident already, knowing him.

Damiana, it sounds like you are on the mend a bit.  Please try to sit still as much as possible, except for a little walking around periodically for your circulation.

Dvygirl, I hope you are sleeping now.  I wonder why we get these bouts of insomnia? i had a period of a week, or two that I just could not sleep at night now matter what you gave me.  I know the chemo is kicking your butt right now.  Hang in there.  There is an end insight.

Gee, I was hoping for a more coherent post from Jeannie at this point.  I hope all is well with her, and all other's still in the hospital.

So, the worst part of my recon should be my tummy, right?  Since this is delayed recon my ROM should be fine as soon as they give me the okay to move around.

Kuka, you have been very quiet, which means you are feeling well, and are staying busy.  I thought about you because I was thinking of the little things that can go wrong, and I thought about you, and your blister, which I am sure is a faint memory to you now. 

Typewriterjenny

Here, here bailey! Haha.



Beautiful day here. I need to play outside today!



Damiana- I was simply doing what every non cancer patient tells you to do- focus on the positives- and so after venting frustration about the conflicting pathology reports etc, I said, well, at least the cancer will be gone, and I'll finally have a normal feeling left breast and, a tummy tuck! Then the comments. It's an odd thing. If annnny other part of your body were getting removed ppl would all be talking prosthesis. Just gotta choose not to dwell.

Typewriterjenny

Christmas in July is on qvc. Those bliss lights are really pretty in the trees! Haha

goldie4040

Thanks for all the postive spin on my son's insensitive statement.  I am sure I will forgive and forget very quickly.  He probably has forgotten the incident already, knowing him.

Damiana, it sounds like you are on the mend a bit.  Please try to sit still as much as possible, except for a little walking around periodically for your circulation.

Dvygirl, I hope you are sleeping now.  I wonder why we get these bouts of insomnia? i had a period of a week, or two that I just could not sleep at night now matter what you gave me.  I know the chemo is kicking your butt right now.  Hang in there.  There is an end insight.

Gee, I was hoping for a more coherent post from Jeannie at this point.  I hope all is well with her, and all other's still in the hospital.

So, the worst part of my recon should be my tummy, right?  Since this is delayed recon my ROM should be fine as soon as they give me the okay to move around.

Kuka, you have been very quiet, which means you are feeling well, and are staying busy.  I thought about you because I was thinking of the little things that can go wrong, and I thought about you, and your blister, which I am sure is a faint memory to you now. 

mammalou

Goldie... Hang in there. Part of what family does is try to follow our lead because they don't know how to help us. If we are uncertain, they say things that they think are giving us the room to change our mind or whatever. I know that I usually know what I'm going to do , but voice anxiety just so they tell me what I want to hear. They just don't always get that.



I worked in my classroom for about 6 hours yesterday, trying to get ready for school to start in 3 weeks. I was pretty wiped out last night and slept really heavy. My abdomen seems to be getting a little better. Hawaii in 2 weeks!



As far as ROM, I do have definite range of motion issues after DiEP. Of course, I have had ROM issues after ALND, MX and RADS.



I got a comment over being lucky to get a tummy tuck paid for by insurance. I just ignored the comment but it did make me mad. I would never do this to myself if I didn't have breast cancer. As far as new perky boobs, people don't realize that we still aren't really "normal" like them. There are issues with pain, numbness, ROM, scaring....... The list goes on and on. Not to mention the PTSD of breast cancer and the very lingering fear of recurrence. They just don't get it.

Anonymous

I agree mammalou...wouldn't have done this if not for b/c. And most people do not realize the issues that can and do arise with implants....even if it goes well they have to be replaced every so often. And most people (and plenty of them even in the bc community) are clueless that there are women, like me, for whom an implant is not an option at all. If it weren't for flap surgery I would be living with a chicken cutlet in my bra for the next 40-50 years (God willing).



And I tell you what...when people ask how it is to have a tummy tuck, my advice, after having it done, is "just do the sit ups and lay off the ice cream....it's easier by far". I really love how my tummy looks, but how it feels kind of sucks still and sounds like it will for a while. I am ok with that....went in with my eyes open...and I know it's not for forever. But it's no picnic. (Still glad I did it, no regrets).

goldie4040

Typewriter, thanks for the supportive words.  You are all probably right, he is as tired of my surgeries as I am, and wonder's why I am putting myself through it.

Bailey, your tummy still bother's you?  I didn't know that.  I thought you had more of a problem with your foob. What still bother's you about your stomach?

Anonymous

Goldie - I am 8 weeks out of SIEA...which was preceded by 6 rounds of chemo, 18 rounds of Herceptin, radical mx, 33 radiation tx, hysterectomy and oopherectomy, two major infections and a year and a half of tamoxifen/femara. I only add these as background to help you or anyone reading this understand that I was already seriously beat up (and tired lol) going into this. I delayed my diep by about six months just to try to get into better shape and get further away from my tx that caused a lot of delayed tissue healing in my body. So the issues I have may not necessarily translate to anybody else.



Also, I am active, back to work and busy being mom at 8 weeks but that doesn't mean I am feeling like I did presurgery or prebc....just means I am not letting my issues get in my way of living the life I want or do what I want to do....even if some of it is a bit modified right now (like I can ride my bike for 8 miles....not 20.....yet!)



So, my diep issues at this time are two small spots on my lift incision that are slowly healing. They require daily attention and constant covering so they don't ooze on my clothes or get infected. Same thing with the spot on my noob incision. The noob is still too large, too far under my left arm and swollen. I also have a very large (fist sized) spot of something (hematoma, fat necrosis, scarring idk) on the left side that has become painful (I see PS Tuesday so we will get to the bottom of it, no worries).



My tummy incision healed beautifully....meaning it closed and is staying closed. That is a big deal for me because of my delayed healing issues post chemo. However, I am still numb from below my rib cage to a few inches below the top of my thighs (siea flap causes upper thigh numbness). I still feel like I just started a new, drastic abdominal workout regimen two days ago and overdid it....it feels that way every day. I have the iron plate or board sewn into my stomach feeling. I am still aware every day that I had major surgery.



But I cannot stress enough that I am really quite fine with all of it. I got what I bargained for. I am healing...it just takes time.



Some people on this board have an easier time of it than me...praise God! So happy for them and I hope it is that way for everybody else. Some people have a much harder time than me....and I want to support them and I pray every day for them.



It's all good, no worries!

Janet_M

Bailey - I like your attitude. Mine's not so positive today. I'm 5 1/2 weeks, and feeling mopey cus my tummy won't close - I've got three niblet size sores that are still alive and well  - and need bandages and goo. I've already wrecked most of my T-shirts with ooze and creams and I'm crabby. The Dr said everything is fine, I just have to keep treating them. I also have the daily iron tummy, and slight hunch. although both boobs are healing well. And even though I'm flat fronted, I'm wider, and none of my cute clothes fit. Pants are out of the quesiton. But like you, I went in with my eyes open and I am giving myself a day to pout and then I'll buck the f*ck up again.

I'm heading to the Gulf Coast tomorrow - staying with friend who has place on the ocean, and also has a pool. Neither of which I'm allowed to use. Sigh.  Looks like I'll be the poolboy.

Anonymous

Get your grump on, Janet, we all need / have the down days. It's allowed and understood (or at least understood by your flapper friends).



So I am keeping my open spots covered with a small gauze and a piece of tegaderm (waterproof film:....removing it and washing in the shower every two days. In between I just leave it alone. They are healing. I was using alcohol wipes to clean but was advised to just use soap and water instead. No cream or ointment of any kind. The large one is down by half....smaller ones are getting there....3 smallest ones have been closed for several days.



I went to girls pool party today and waded up to my hips....all I could do not to JUMP IN!

kuka21174923

Hello everyone! I've been staying very busy this weekend. Went shopping for cars yesterday and came home with a new one! Yay!! There's nothing like that new car smell.

Goldie, to answer your question about Nola, I feel like I recovered really fast. The second day after my surgery I was washing my hair on the sink in the hospital's bathroom. I came home on the third day and gave my dog a bath and then I took a shower by myself washing my hair. I think I did so well because I didn't have cancer and I'm just 35 years old. Never had chemo or rads. I also think I pushed myself. Like Marty said, I knew staying in bed wasn't going to help me on my recovery. My BS told me the recovery time on DIEP is 8 weeks. But I just refused to take 8 weeks of down time. Sorry, but don't have the time for that. Not everybody heals the same way, and not everybody takes pain the same. I have a back fracture from a car accident 15 years ago. My L1 got fractured and the one above and below are compressed. Occasionally I have some lower back and with the DIEP I had pain on my lower back from the posture. Never had any pain on my tummy incision or my new girls. But again, I tolerate pain really good and I don't make a big deal out of things. I looked at this surgery as having a tummy tuck and a boob job. I know is nothing like it, but that's how I decided to look at it and deal with it. If other women can have those surgeries done when there's no need for them to do it, so could I. I knew women that had cosmetic surgery and were only down for a week or so. I know that ours is a little more complicated, but I didn't want to look at it that way! Now I'm 3 months out and feel great. I'm doing a lot more than I was doing before surgery, which makes me feel even better!

To the ones going in this week, good luck! It will be over before you know it and you will feel great!

Jeannie57

Ha! Just reread my first post after surgery

I was pretty confused. Every time I'd wake

I'd say "Time for surgery!" even though the operation was over. I also told my nurse she was short. All kinds of weird things came out, even today, so I've been quiet on here. I do know I had a true DIEP even though it doesn't matter one bit. Off to do OT. I keep getting faint when I sit up which is discouraging. I see a bed pan in my future.



I keep holding on to the words you've shared about not having regrets. One day at. A time

goldie4040

Hang in there Jeannie.  Hope you can tell us more tomorrow.  Sounds like you are much better today than you were two days ago. 

goldie4040

Kuka,

You are right.  You didn't have cancer, you didn't have chemo, you hadn't worried yourself to death over a biopsy for days, etc.  You are also young.  You had many many advantages over the rest of us.  Plus you had immediate recon, which always looks so much better from the start.  Am I jealous, yes.  Am I happy for you, yes.  But, I read your posts before your surgery, and you were just as apprehensive as any of us, but time heals all wounds, as they say.

kuka21174923

Goldie, absolutely! I was scared to death!!! And if I hadn't been BRCA positive I would have never done a surgery like this for cosmetics. What I'm trying to say is what most veterans have said before. I think the worst part of DIEP is the waiting time for your surgery and the unknown. I was shocked at how painless the recovery was. Going into this I thought I was going to be in so much more pain!! I have no feeling on my chest or my tummy area. I hope I get some feeling back, but I thank God I didn't have any feeling then, because it helped me a lot!

I almost told my ps that I wasn't going forward with surgery the morning of. That's how scared I was!! After it was all done some friends would come to me and tell me how brave I was, but I didn't feel that way. It really isn't a dangerous surgery, just a very long and meticulous one. I never tried to offend anyone, I just expressed my feelings and what helped me during my recovery. I know I'm different from most of you here, because I didn't actually have cancer and I'm younger than most women getting this procedure done, which I believe it has helped me to speed up my recovery.

Goldie, all I'm trying to say is that you will do fine. We've all been there. Scared to death. I remember Marty was one of the first veterans giving me advice in here and I didn't believe her when she said that I would feel better after DIEP. That I was just scared of the unknown. But it's true! You have all these questions going through your head. But believe me! You will feel so much better after the surgery is done. I did have immediate reconstruction, but remember I had a very nasty and big blister that caused me to now have a very big red scar on my breast. Ps will try to get rid of most of it at stage 2, but he already said that the scar is too big and some of it will remain. Is not perfect, specially since my natural breasts looked pretty good, but I need to accept it and be happy.

Sorry for the long post, just needed to explain myself a little better. I hope I did and I hope nobody gets offended by it. Not my intention at all!!

MartyJ

We are all different in our cancer and our approach to it and to our recoveries.  I marvel over the women like Kuka who are so brave to not want to risk their futures and attack the big "C" before it happens.  It takes a lot of strength.  And many of them have had to agonize over a mother or sister's cancer.  And then are worried to death about when it will strike them.  I am amazed at the women like SBElizabeth and Goldie who go through chemo and rads and still come back fighting.  Some of them take longer to heal than others.  Some just have the bodily make-up to be up and about sooner than others.  We should never be jealous of each other.  No one's cancer is worse than the others.  No one's treatment is worse than the others.  We are one whether we lost our breasts 30 years ago or yesterday.  We each approach new stages in life and unfamiliar surgeries with apprehension - it makes us human.  But, time and humor are the greatest healers of all.

kuka21174923

Sorry almost forgot. Even though I didn't have to worry about the results of a biopsy I did have to wait for 2 months on the result to know if I was BRCA positive and then once I found out I was hoped I could have my children before I got cancer. Now that I've taken care of myself I have to worry about if I had pass the gene to any of my kids, which I won't be able to find out until they're 22. That's how old they have to be to get tested.

I'm not saying that cancer is not a big deal, but any mother would have to agree with me, I would've rather have cancer than pass the gene to any of my kids. But that's a road that we'll cross when we get there.

kuka21174923

Marty, I just love how you explain yourself. I wish I could do it as good as you can. I guess since English is my second language sometimes it gets confusing reading my posts, so I apologize for any confusion😄

Goldie, stay strong and only have positive thoughts! Think about how good you will feel without the TE's! But I will tell you that your back will bother you. It's probably the only pain I remember having.

goldie4040

Thank you Kuka, and Marty.  BTW, Marty...I am sorry if you misunderstood somewhere along the way, but I never had rads, or chemo.  But, I marvel at the ones that have, and come out the other side stronger than ever.  They are my heros. 

Kuka, you did the right thing, and maybe someday soon they will do genetic testing as soon as babies are born so we know what to watch for, but I don't know how well that would work out.  It would have to be a parental preference. 

ssla01

I agree recovery is different for everyone. I did not have chemo or rads and I'm so thankful. My diep surgery was changed to a gap and I also believe now that the gap recovery is easier. That being said, I'm four weeks out and I get very tired and am still sore. I think you must listen to your body and your doctor to determine "your" recovery rate.



Best of luck to this weeks future flappers!

Anonymous

Goldie and Pkeiles - you ladies are on the docket! I agree with the others...the worry and wait is always the hardest part...soon you will be flapper girls! Prayers for you!



Sbelizabeth - are you having some sort of stem cell transfer to your radiated area? If so, what is that procedure called? I am interested in looking into it. Oh! And....baby????



Don't you wish you had another Sunday tomorrow? I need another Sunday.



Nihahi - what sort of volunteer work did you do this weekend?



Kuka - what kind of car did you get?!?

mammalou

The stem cell transfer is done via fat grafting. My BS described it as ... They lipo the fat, shake it all up in a machine to isolate stem cells, then inject the stem cells. My PS says they have had luck with the cells reasorbing into the tissue. This is in very layman's terms, obviously😉. Sounds interesting for sure.

Anonymous

It does sound interesting....Will talk to my PS Tuesday. The radiation effects have been something I thought I would just have to live with, but I am always looking for developments.



Marty - wise words, as always



Kuka - I never would have guessed from your posts that English is your second language...what is your first?

goldie4040

Bailey, there is a video on You Tube of Suzanne Somers having half her breast reconstructed with fat grafting that was spun out and separated in fat cells and stem cells.  It was part of a Dr Oz special  I believe it is a series of 3 or 4 videos that cover the procedure from beginning to end.  I saw it before I ever got diagnosed.  I thought, gee... how cool is that.  They completely reshaped her breast that had been deformed by a huge lumpectomy years before.  The way they separated the fat cell and stem cells keeps it from being reabsorbed.  Amazing stuff.  I will see if I can find a link to the videos.

goldie4040

http://www.youtube.com/watch?v=xt55cTQEoHk

Here is video part 1 of the Suzanne Somers breast reconstruction with fat grafting and stem cells.  You can follow the rest of the videos from there.  It is very interesting.