DIEP 2011

Snobird

Lady M - thats what we love to hear.

Sounds like everybody is doing great even though there are different experiences and different surgeons involved.

Good Luck to all of you in the next wave.

alexanjb

Norma June, welcome to the site.  You will find out all kind of things on here but keep in mind that everyone has different circumstances.  The great thing is I haven't seen anyone say they are sorry for doing this.

mscal02

Hi Ladies: We had a storm and power outage here for a few days.

I am so happy for everyone that has made it through and are recovering so well! for those of you that are on your way prayers and good vibes are being sent your way!

I am still walking and have started to walk six miles a day. Next week I plan on adding more.My stomach has loosened up and has a natural poof. I still have some glue on my breast that I will help sloth off next week. I had to order the scar treatment that my Dr. recommended . His nurse told me that is the one that has proven to work for his patients.I still feel a little tired around my waist at times, but I keep pushing forward.I only wear dresses when going out, because I don't know how long I will be out and I don't want to aggravate my incisions and have to cut my outing short. I still have swelling and some pain just above the incision on my breast. I am looking forward to hopefully have the whole process completed by Christmas.

JustLaura

I'm jealous Ladym. I have low blood pressure naturally and it is causing me a bit of a problem now. I have gotten up into a chair twice and each time at about the 20 min mark I get light headed. They are pumping me full of fluids now hoping that will get my blood pressure up then I will try it again. I hope I can do it! I really want to start walking the halls and get rid of this catheter!

Other then that I'm doing well. Staying on top of the pain. Eating well and sleeping well. I'm hoping to get discharged tomorrow but that will depend on my bp.

Sherryc

Well looks like I will be joining you ladies here.  I will be having a BMX with DIEP reconstruction.  I have permanent nerve damage from rads that they are going to try to get rid of my pain and I am also not wanting to be scanned every 6 months for life as my tumor never showed in a mammo so I would have to have yearly MRI's.  Anway I went for my 1st PS appt on Tuesday and he wants to do the DEIP on me.  he said I have alot of damage from rads so he is going to perform my MX as well as my reconstruction.  He said he normally has the general surgeons do the MX but in my case he is worried about my blood vessels and wants to make sure they do not get any more damaged than they already are.  I like the fact that he is being cautious.  BUT I am too skinny at this point and need to gain 10-15 lbs so he will have enough tissue to work with for both boobs.  I go back in September to see if I have gained enough weight and also to see how my rads skin is healing as he thinks it is healing to slow.  I finished rads 5 months ago but I am still swollen, and have alot of color in the skin.  I hope that in three months things will work out to where I can go ahead with this.  If not I will have to wait some more.  That would be OK as well I just want it to be what is best for my body. And he does think I am a good candidate for a delayed reconstruction.  He wants it all done at the same time.  Has anyone else had to gain weight and if so what put the lbs on with fat the quickest??? I eat really healthy and lean so I know I am going to have to change how I eat.  Pasta makes me really bloated but maybe I can deal with that for a few months. Any suggestions are welcomed.

treesprite

It is so GREAT to hear how well everyone is doing! Wow - 18 hours for you Lori and 6 hours for Mo - and both doing really well!

This process is so emotional and it is hard to describe to anyone that hasn't gone through it how it feels.

Even thought the initial procedure sounds overwhelming, we tough it out by taking it one step at a time and waking up to soft noobs makes it all worthwhile. Tears of joy!!! So lovely!!

Crimson: I had an occasional ache about an inch to the side of my sternum and my PS said it was where they chiseled out cartilage to get access to the blood supply.

I encourage anyone with post op concerns to call their docs sooner rather than later. Not to scare anyone but my PS said the one flap he has lost outright was a patient that waited 5 days to call in about a concern. 99% of the time our concerns will will be expected and normal but why worry or take a chance? Throughout this process I have tried to train myself to call whenever I have a question, still working on it, but getting better. 

XRAYestInMA

Thank you for all the words of encouragement. I'm doing WAY better at 9 days post-op and have learned to give myself a little credit just getting through an 18 hour event such as I had. The visiting nurse came today to check me out, and says all is good - although she admits (as did the intake visiting nurse), that she has never had a patient who has undergone a DIEP. It's OK - I just let them "do their thing" if it makes then feel useful. 

I called the PS's right-hand nurse last evening (she actually gave me her cell phone number - what a gal), and she made me feel 1000% better about what I thought was a beginning of a separation in my suture line of my right breast. She says what I am experiencing is perfectly normal when the Dermabond starts to slough off, and that it is just the skin/tissue healing and the body healing from the inside out. Even the VN said the incision looks great, so I just have to stop my mini-freak out, and trust the professionals.

My sternum is kind of tender (in between the cleavage, Woo Hoo), but not painful in any way. I am weaning myself off the Oxycodone slowly - down to one 5mg every 6 hours or so after an INCREDIBLY painful episode of constipation and abd. pain. I WILL NOT got through that again So long Oxy, Hello to my new pal = Tylenol Extra-Strength.

LadyM (Mo) - I know EXACTLY what you mean about having 2 "breasts" again - I can't believe I waited 6 years for this - despite everything that I have been thru thus far, I do not regret having this DIEP for one Milli-second. Even though my Noobs are still healing, full of scars and Dermabond glue, I think the twins still look GREAT!

Positive (((VIBES))) going out to the June21 club !!! That is the first day of summer I think, and the National Day of Slowness (or "taking it easy"). With that being said, you 3 ladies DIEPing on that day should be calm, cool, and collected going into this surgery, as well as your surgical teams. 

Suz39

Hi All,

It has been so great to read about how well everybody is doing post surgery.  It is getting very real for me, and I won't lie and say that I don't get panicky every once in a while.  But then I just come here, and read about how well everybody is doing, and I'm good to go.  Today I went to the mastectomy bra store, and bought a couple of really comfortable front closing bras.  I'm still not sure if I will need a bra, but it never hurts to have a comfy bra, so I will bring them anyway.  I also splurged and bought myself a lazy boy recliner.  Something else to look forward to after I get discharged.

5 more days until June 21st eeee!  Lots of healing thoughts to all the ladies in recovery right now.  And courageous thoughts for those of you just starting this journey.

Suz40(now) 

alexanjb

I got bad news at the follow up appointment today.  Apparently, it is not ok that part of the new breast is a mottled purple and cooler to the touch than the rest of me.  I may lose part or all of it, but all we can do is wait.  There is nothing to do about it at this point.  I go back to the Dr. on Monday at 8 am.  I  guess it is very unusual for something to go wrong at this point (one week out from the surgery) so I am trying to be optimistic.  It just became colorful yesterday and I didn't figure it was unusual, after all, they took my abdominal fat and made it into a breast and I figured bruising and discoloration was part of the process.   The drains didn't get removed either.  Drat it.  And here I was worried about the belly button and was told everyone thinks it is infected but it is just draining.

 

alexanjb

Sherryc, having to gain weight has never been a problem for me.  But I am thinking why spoil it if you eat healthy?  Maybe you could try nuts and shakes, olives, avocados (not all together)?  Bad habits are hard to break and I would hate to see you "learn" to eat the bad stuff that most of us are trying to break ourselves from.  Maybe you could eat what you normally eat and just tack on a few extra meals?

Jerusha

Sherryc, I'm a NOLA girl, but since I am only 5 weeks out from my DIEP, I keep up on this thread as well. I don't want to confuse things for you, but the weight gain approach is rather different than most docs and I encourage you to read the NOLA thread, their website and look at some pix on Tim Tams site of women who had SGAP and other free flaps from sites other than tummy.There are also a small number of other practice groups around the country ( many of these doctors have trained together, actually) that also specialize in this. If you are at your comfortable weight now, and return to it after your surgery, you are going to be losing it from your new hard-earned boobies. Most docs feel that we should be at our healthy weights going into surgery . PS's who do nothing but free flaps and have lots of experience with this kind of surgery, will find places to harvest fat even from very thin women -- hips(front and back), butt, thigh. I would be cautious about a PS who does not have this range of expertise . Just my two cents!

zogo

Oh No, Alexan, that news is definitely disconcerting. How big of an area has turned purple? I'm sure it will be a loooong weekend for you until you can see your doctor again on Monday. 

Sending good karma that your breast will end up healthy and this issue will resolve itself.

Hugs 

Sherryc

Jerusha thanks for your two cents I always welcome comments and suggestions never know when you might need the info.  Actually my PS does have experience in the other flaps and they do do them at this practice.  It is one of the better known practices.  My biggest problem is that I have alot of rads damage and the blood vessels in the other flaps are too small and he is afraid that with my damaged blood vessels from my rads breast that he needs really good blood vessels to do microsurgery on and he feels that the DIEP is my best solution.  He is afraid I won't get enough blood supply with the other flaps and that I would loose the harvested tissue.  But I did speak to another friend who weighed 125 at the time of her DIEP and now weights 113 which is where I am and we are the same height.  She said she has lost a little in her boobs but not enough to make a difference.

Alexanjb so sorry to hear of your issues with your tissue.  Not a thing you want to hear.  I hope things will turn around and you do not loose it.  My DH said I just need to eat double portions of things.  I do like buttered potatoes so maybe I can just eat more of that in the mean time.

hopeful34

I was wondering if anyone here had to lose their belly button due to DIEP surgery?  My PS says I will probably lose mine if I have DIEP.  I currently have TE's but they have failed once and I have an infection again, so this may be my only option.  I don't mind, but I really don't want to have no belly button.  Any advice would be appreciated.  Thanks.  Allison

mscal02

Alexan: I will be praying that everything is alright.

Suz39: Just inhale and exhale............. you will be okay.

hopeful34: I have a new opening ,but still have my belly button.

treesprite

alexanjb: I had some flap loss around the perimeter at about a week out, some fairly large areas on the lower edge and smaller ones across the top. My PS said that the flap was very healthy all the way around at surgery, but for some reason, some didn't survive. Most of the flap is fine and the hard areas have softened and broken up and my PS said that all can be handled at stage 2. At about 3 months, the areas still look bruised and mottled and are cool to the touch.When I first found them, they seemed huge but now they really aren't an issue.

I 'discovered' my hard spots on the Friday before my Monday follow-up visit and felt so upset that I put myself to bed for most of the weekend and gave myself permission to feel sorry for myself. My DH kept telling me that everything was going to be fine and it really is.

Kathy

alexanjb

Thanks for the prayers all and thanks for the info Treesprite.  I do think it will be all right, one way or another.   It was startling and I thought I had been doing so well and it is a bit disconcerting when they say they are going to cut you to see if you bleed................well I did, and it was red.  So.

Hopeful34, I have my belly button it was "just" moved.  I have heard of people getting new ones, but I can't believe you would be left without one at all.  Somewhere on here it was described how the new belly buttons were "fashioned" and it sounded quite quick and simple.  And I think if they plan on giving you a new one they ask if you prefer an inny or an outy.  These PS's are truly demi-gods.

alexanjb

Zogo, I guess the whole area between the suture lines is purple, but all that is purple is not cool to the touch.  I am small breasted anyway, so I think if some has to be removed I can still match my other breast.  The noob is definately bigger right now and even taking swelling into account it is probably bigger than my left breast.  It's just that I did bond with it right away and don't want it carved up!  I was seeing all of this as a small victory against cancer so it is disappointing.

pupfoster1

Alex,

I'm sorry your'e having to worry about this now.  I would have thought the same thing that 1 week out it should be fine.  Crap.  I got a bit of a scare but it was right away while in the hospital.  The SAT monitor kept showing the levels dropping, but all physical examinations showed otherwise.

I'll pray for you this weekend that things turn around in your favor.  Did they say anything about keeping the flap warm (not w/a heating pad, just a blanket/whatever)?  I remember them being on me about that while I was still in the hospital.

I'm doing OK after my revision 2 weeks out.  Was rough the first couple days, but getting better each day.  Still sleeping on the couch though as our bed is too firm to sleep on my sides at this point.

((((Hugs))) to all you ladies still in the hospital and to those w/upcoming surgeries!

Sharon

treesprite

alexanjb: It is interesting that they cut you, but I guess it makes sense and probably didn't hurt? Good thing I hadn't heard of that, I might have given it a try  . . . yes, I am that stupid sometimes!

It is a bonding thing, isn't it! Your PS will likely be able to give you a good assessment and options on your next visit.

My belly button was glued up and GROSS till the glue fell/peeled off. My goodness, all the things that I never dreamed I would ever even know about, much less experience first hand. A few areas took longer to heal and oozed and bled a bit until they healed from the inside out. Good to have panty liners on hand - easy to cut them to match the various areas.  

hopeful34

Thanks everyone.  I will ask the PS tomorrow when I see him if he can make a "new"  belly button.  Glad to hear this is not uncommon.  Thanks again.

c8ndygr1

RE: belly button ~ my understanding is the navel remains where it is, the skin is cut out around it, then the new belly skin is stretched down over it and a new belly button hole is cut and stitched to the existing navel creating a new belly button. It will probably look different from the old one. Someone correct me if I'm wrong.

NotAfraid

C8ndygr1, you got it right.  I always say that they had to stretch the skin over my navel and had to cut a new hole for it so it could breath.  

Alexan - I think they do these surgeries in stages so that there is opportunity to fix things when they go wrong.  As I've said, I had 2 surgeries because the 2 veins on the left weren't doing enough and the flap was starting to fail.  They "installed" another vein and it has been great ever since.  I DO have some necrosis in a couple small spots.  

Every time I notice something a little off, I just say "Stage 2, baby!" 

c8ndygr1

Lori, was your painful abdominal episode caused by the oxycodone and constipation?

QUESTIONS for everyone:  How tight is your new tummy? Does it cramp your intestines? How soon does it loosen up? I'm afraid my intestines will be all smashed in and I'll really get constipated?

Thanks to all for sharing the things that are happening as you heal. It will help us to watch for signs and to reassure us that 'stuff happens' that it's all part of the recovery process. It helps to hear you all still love your new noobs despite the glitch or two here and there.

nicurn4222

You are right c8ndygr1! They just pop it back through!! lol 

Had a rough morning! Worked my last night shift and this morning before I left almost everyone on the day shift lined up to hug me and wish me luck! It was so nice but the way some of them got so emotional I felt like I was going to the electric chair!! Yikes!! Cried all the way home! Didn't last long though!!

Talked to my PS today and she has me going back to work in 6 weeks. I sure hope that is enough time. I work 12 hour shifts. I'm sure she knows. Has anyone else gone back to work at 6 weeks? Is it enough time?? I hope so!

OMG Suz (now 40 Happy Birthday!) I went and bought myself a recliner too!! Bad thing is when we got it home it made me realize how old the family room furniture looked so we went back and bought new furniture! Delivered today and it's beautiful!! It will surely be a nice room to recover in now!! lol

Alexan Yikes!! That is so scary!! I hate that you can't see your Dr. again until Monday!! I will pray that all will be well!! Sounds like keeping it warm might be a good idea. Did they say anything about that?

21 club...4 days and counting.........Lynne

goldlining

Thank you so much everyone for sharing such specific information. Visualization is a big big reassurance for me. I feel I can deal with anything if I am prepared for it.

I'm still waiting for a projected date but suggested that I would love to go shortly after Labour Day, and the reaction didn't suggest that was outlandish. I was told not to lose weight, but I want to run some more to be in peak cardio condition for the long sleep. I got the feeling that if I didn't prefer to wait, I could have been wait-listed for an earlier date.

If the Big Day goes well and doesn't need any emergency returns to resuscitate flaps and such, is the time gap flexible between that and stage-2-if-there-needs-to-be-one? I read people going back to work in 6 weeks, and that sounds really good. Once I'm back to work, I'd like to be able to work for a complete unit of time (academic term) before absenting myself again for stage 2. Do most people do stage 2 on a mutually convenient basis or is it a set interval after the DIEP? Thanks all! (And good luck to the June 21 Summer Solstice babes!)

NotAfraid

I went back to work at 4 weeks with "light labor" and was walking the "big dogs that pull" at 6 weeks.  My muscles were a bit out of shape, but that didn't last long with all of my forced exercise. I still took a lot of naps, but I think that's just me.  Napping gives me a good excuse to cuddle with the pugs. 

My stage 2 is scheduled just after my 3 months mark.  I pushed it back 2 weeks so I could earn lots of money over the July 4th Holiday.  I'm planning on being out 1 week after Stage 2.   I'm adding in an endometrial ablation and getting coils in my Fallopian tubes for birth control to the surgery menu.  I figure I'm out, they may as well just do it all!

XRAYestInMA

@c8andgr1 I sure can attribute the constipation with the narcotic pain med, and please be advised = DO NOT let that happen to you. IMO, that pain was worse than the pain all over my trunk from the DIEP. Gross as it may seem, it is not natural for people not to poop, and when the body cannot, it rebels terribly. The first inclination that I had an impending bowel obstruction was the vomiting prior to finally (with the aid of a laxative suppository) being able to have a BM. I am now taking the minimal dose of the Oxy , and Tylenol when I feel really uncomfortable and so far so good. My tummy is tight - but I'm only 10 days out. I am able to stand up pretty straight for very short intervals of time, and my intestines do not feel cramped. I'm thinking there is still plenty of room in my abdominal cavity for them since all that was removed from my lower abd. was fat, vessels, and skin tissue.

@alexanjb OH my, I am so sorry to read of your flap discoloration. I'm praying that all will be well come Monday when you see your PS again. I can feel your fear as I know I would feel the same. I do have some bruising, but it is up high on my left side where I had the PMX - it's my regular tissue, not the transplanted belly tissue. It is sure to be a long week-end for you, but please try to hang in there.

I didn't "lose" my belly button and have never heard of that happening - but I suppose anything is possible. Mine looks pretty much in the same spot as it was pre-DIEP, and it's still an innie. I think it has some stitches in it - but it's kind of difficult to look inside - and I really don't care to. I have no pain in it, and no drainage or anything. Overall, I'd say the belly button relocation is not an issue. 

Re: splurging on a recliner ~ super idea. We have one and it is super comfy to sit in and recline during these early weeks of recovery. At 10 days post-op, I can get into it and out of it *all by myself*, haha. At first, getting out was a challenge, but I have learned to use my leg muscles and now - not so bad. 

Re: going back to work....I'm taking a good part of the summer off - 11 weeks total from the day of the DIEP until I return to work at the end of August. I do have a very physical job and will need to be as close to 100% when I return. I am able to do this because the company that I work for provides employees with an FMLA of 16 weeks, and I purchase short (and long) term disability insurance thru my employers umbrella policy at a minimal cost. There is no "light duty" where I work. I do not believe I would be able to return to work doing what I do in 6 weeks, so I am very grateful to have an availible leave.

@SherryC Gaining weight has never been an issue for me either, and I was not at my ideal weight when I had my DIEP - but had recently lost 40 lbs so I was at a decent weight, although still overweight according to the medical charts. My PS did not mention my weight at all, other than to say that he could provide me with two breasts of approx. the size I was before. I am thrilled (so far) with the results - and have two full C cups and a super flat abdomen. If your PS suggested you gain 10 to 15 lbs, then perhaps he could give you suggestions on how to do so a healthy way.

@Suz39 HAPPY 40th! Getting yourself a DIEP for your birthday, are ya? What a gift ;-)

I think someone (IowaSue ?) asked how we were going to be monitored for a recurrence now that we had the DIEP. Well, I for one who have 2 DIEP boobs and no breast tissue will be passing on the yearly mammograms, and do not see a need for a "breast MRI" either since no real breasts. My Onc. orders blood tests several times a year and has tumor markers checked to look for elevations - so far all has been good. Other than that, I'm not really sure what else there is to do. I will say that I can now breathe a *sigh* of relief at having no breasts since I have had fibrocystic breasts since my teens and always felt "lumps". After being DX with BC, every fibrocystic lump gave me worry, sometimes to the point of tears. Now, no lumps, just soft, smooth, belly tissue.  At 6 years out and a history of arthritis in my lower back, I do not freak out at every ache and pain and try to keep a positive daily outlook. I live one day, then 1 week, then 1 month, at a time - taking a step forward every day and never looking back. I live for today but hope for a long future full of many days - good days, that is. I'll see my Onc. in August for my next f/u and ask her, and then post how she feels about the subject.

I did get a call from the breast surgeon's office (who did the left PMX) to inform me that the pathology on my left breast was completely B9! I am very happy to report that . I'm not even sad at the thought of removing a "healthy" breast, just relieved that it is gone and so are my worries about another BC. Looking forward to feeling stronger every day and then onward and upward to Stage II.

Have a great w/e everyone and Joy - you will be in my thoughts and constant prayers....

~Lori

 

Sherryc

Lori I did call the PS nurse and talk to her about how to go about gaining weight.  She suggested that I eat more carbs.  And she repeated what the PS said that he did not want me to give up my exercise program.  So yesterday I loaded up on butter potatoes at lunch and had spagetti at supper. I told my boss that his wife can start making me cakes and cookies for the cause. haha She bakes for private events and everything she makes is yummy.

alexanjb

Lynne, I did ask if I should do anything....and was told no not really.  I said maybe a heating pad and was told not to, they have seen people burn themselves with heating pads because there is no feeling.  The NP said I could do gentle massage, but that was so gentle that I think she was just giving me something to do.  I am a cuddler in my blankets so I do keep warm at night.