DIEP 2014

Shine14

my iPad was going crazy so I posted that before I lost it. i will also wait for nipples until my next round of fat grafting. I wasn't that excited about nipples but after reading about others experiences, I am looking forward to it! And also I wanted to add that my left foob had a hard sore spot and he said he would poke around at it to promote blood flow and soften it up. So far it seems like it worked! That spot would get sore especially when exercising. If that goes away, I may even forget these are foobs! A girl can dream..

Teacher64

Today is tattoo day or as a dear friend says...tittoo day! Excited, a bit apprehensive, but read

MEG2

Good Morning All ~ congrats on nipple tattoos Teacher! It must feel good to finally get there.

Seashore, Yahoo to only 1 drain left; I have two remaining and my PS said as soon as they get down low enough I can pop in any day this week to have them removed as well ~ as I was complaining about drains he explained to me that when he did a lat flap surgery patients left with 10 drains ~ sure put my minor whines into perspective. Norita, glad you are feeling well too. May the restful healing continue....

The new foob continues to look/feel great, so surprised as there was no redness or bruising to that area, only some swelling which continues to subside; minor bruising to tummy incision/scar but all in all so happy with results.

So sad to hear some of you struggling, I wish I had some magic words to help ease your way. None of this is easy by any stretch but the emotional toll can be just as devastating as the physical; the combination must be unbearable at times. All I can say is F*^% Cancer and F*^% the pink horse it rode in on...may you find some peace and joy among the ruins.

caligirl3

Hello,

I am having surgery on December 10th. Bilateral skin sparing mastectomy with DIEP. Feeling overwhelmed and nervous. I've been reading many of your posts. It has helped to know what to expect. Thank you all for sharing your experiences. It makes me feel less alone in this journey. I would appreciate any advice on how to physically and mentally prepare. I will probably be popping in to ask questions as it gets closer.

Ridley

Caligirl3 -- I'm almost a year out from stage 1 (Dec 12), and remember feeling nervous around this time last year .  Here's a few things to consider:

-- keep up with whatever exercise you do to go into surgery as healthy as you can -- I think walking outside is great as it has the added benefit of being in nature

- arrange for what you are going to sleep in when you go home -- recliner, wedge pillow, etc.

- have your comfy pjs and yoga pants ready -- most live in those for weeks

- talk to your doctor about whether you would benefit from an anti anxiety med or sleeping pill (I started not sleeping about 10 days before surgery and got a sleeping pill prescription -- I didn't want to go into surgery exhausted)

-- if you think yoga/meditation are helpful, do some of that -- Belleruth Naperstak has a guided imagery audio file that you can buy/download if you think that would be helpful

-- check on restrictions post surgery -- e.g. if you are going to have to eliminate caffeine for a while, you might want to do that now

And remember that you just have to show up on the day and your team will take if from there!

 

 

 

edukes1002

Hi Caligirl3 - We are having the same surgery, but I am on Dec. 5, so I know exactly how you must feel.  Just wanted to say hi and you are not alone.  I have been reading these posts since I was diagnosed and have found so much compassion and helpful information.  I don't have much to advise on, but when I do, I hope I can be as helpful to others as these ladies have been to me.  I am scared, but confident and looking forward to being on the other side of this crappy journey.  Be strong!

MDnowPatient

Hi everyone. I am new to this group and excited to be a part of such a supportive, compassionate group. I am 1 month out from my double mastectomy, sentinel node bx, and DIEP reconstruction. I had AC/weekly T first (likely stage 3 but will never really know) which ended a month pre-op. I haven't yet read through all the previous threads but I wanted to introduce myself to the group first, in case I can be helpful to anyone scheduled for surgery soon (will take me awhile to absorb all the wonderful advice previously discussed). I will start radiation dec 1st. I am finally seeing a light at the end of this crazy tunnel which is both relieving and anxiety-provoking.

When I was in the hospital, I found it very comforting to have someone stay overnight with me. My sisters, mom and friend took turns staying with me. When I opened my eyes in the middle of the night, disoriented or in pain, I could just call out to that person to help me address any issue. If you have any specific questions now or at any point post-op (or just need support) please don't hesitate to ask me since I so freshly went through it.

I turned the corner after about 2 weeks. For the most part, I am healing rapidly. However, it has been most difficult for me to obey the no lifting rule since I have a 5 yr old, 3 yr old, and 16 month old twins. I think the lifting and also running around, enjoying my time off, before my body was truly ready contributed to a small infection in the middle of my abdominal incision (at the point of maximum tension) which kept opening slightly when I was out and about for longer periods but then improved when I took it easy for a day. Nonetheless, it has declared itself and I am now on antibiotics and back to "taking it easy" for a few days with some improvement. I underestimated the enormity of this surgery (and the toll a 9 hour surgery took on my young, active body) and overestimated my 35 year old body's ability to maintain healing at such a rapid pace as I tried to go back to normalcy as soon as I was feeling a little better. I am humbled by this realization that I too require many many weeks of rest to allow my body to heal properly. I cannot just jump back into my "normal" life, rather I need to ease into it slowly.

Thanks for listening and sharing your experiences to aid in my healing.

MEG2

Welcome Newbies, here are some tips I received prior to going in to surgery: pack chapstick, toothbrush, toothpaste, mild lotion, comb, brush (if you have hair at the time), soap, slippers and anything else you feel like you may need for comfort. Wear something comfy to/from the hospital (yoga or sweatpants are most comfy). I did not have to do compression garments and just wear a soft cami around the house, although a soft bra would be OK with my Doc as well. You are "wired" and "connected" for the better part of 3 days to any and all machines that help in the healing process so being able to apply chapstick or brush your teeth are minor feats but add to your comfort. I mentioned nausea to my anesthesiologist and was give a scopalomine patch prior to surgery and had no nausea during my hospital stay or at home. Rest, rest and more rest when you can since the nursing staff will be checking on you frequently. I was able to get out of bed the second day but only for a short time, did better the third day and by the 4th day felt pretty confident on my feet but had all my wires, gizmos and gadgets removed so was feeling much better. I was not prepared for the emotional toll of being in bed for so long with limited movement, because you have a catheter, leg pumps (that prevent blood clots), drains and other machines hooked up to various limbs and body parts the range of motion is minimal. I hit the wall on day 3 and was asking for breaks with some of the attachments....the nursing staff was accommodating as possible. I was about to lose my mind and I just wanted to be free of the tubes and wires and some Independence back so just be prepared for that angle of the journey if that is something that may bother you. My nurses did tell me that many ladies are content to stay put and not have much movement or breaks from bed otherwise so I guess different strokes for different folks. No shower until day 4 but that was a little bit of heaven along with taking myself to the loo . At any rate, I went home early on day 5 and was so glad for the comfort of my own home/bed/shower/food/family/doggy. May you have an easy surgery, hospital stay and recovery....

caligirl3

You ladies are truly a godsend in this stressful time. Thank you for your replies.

Ridley: Im happy you are doing well. Thank you for all those tips! I didn't think about the caffeine, I will make sure to ask. It wasn't on the pre surgery list I was given on what to avoid. I will make sure to ask about that. I will check out the guided imagery. I know what you mean about the insomnia.I'm already having a tough time sleeping. If I wake up in the middle of the night and let my mind "go there" I cant get back to sleep.

edukes1002: Wishing you a safe and easy recovery. My thoughts will be with you. Thank you for your kind words. I'll be happy to give you any support you need as well.

MDnowpatient: Thank you for taking the time to share your experience. I wish you well on your continuing recovery. I know how hard it is to take it easy when you are so used to doing everything yourself. I think that's one of the hardest things I will have to learn. Thank you for your tips. I will make sure to have someone stay with me in the hospital, initially I didn't think I would need that.

MEG2: If I read it correctly, you just had surgery on the 10th of this month? Wishing you well on your continuing recovery. Thank you for taking the time to share your experience as well. It really does help a great deal to get an idea of what to expect. You have given me some things to think about.

One thing that has surprised me lately is, although I always thought of myself as a strong person, I find that I am always on the verge of tears! Also is it normal to be so conflicted, still, on choice of reconstruction this close to surgery? Are you happy with your results? I know its such a personal question, but it is one of my biggest fears. Especially about cutting into an otherwise healthy (abdomen) part of my body. Am I just buying myself future complications? Thank you all for listening. It helps to air out some of these fears with others who may have the same ones. It helps to get reassurance from others who have gone through it and are doing well.

I also promise to share my experience after surgery to hopefully help others going through this.

norita19

There's one thing right now that I'm glad I had which I haven't seen mentioned before: Saline nasal spray. My nasal passages got very dried and "gunked up", I assume from the oxygen. The saline spray helped everything clean itself out.

Teacher64

MEG - we all seem to hit a wall around day three and just need to rest more before heading home.mits when we are moving more and want to make things happen so we can be sprung from the hospital. Watch for weeks 3-4 because the same wall may be in your view again. Take care

annieb4

Caligirl...I know just how you feel. My surgery is the beginning of January and I can't seem to get it out of my mind. I just keep hoping that this is the right step for me, but it seems like such a major step. And like you said, cutting into a healthy part of me, sometimes just makes me wonder. I wish I didnt' have all this time to think about it. I just want it over with.

Here's to all of you recovering ....take it easy, keep strong and well wishes all the way around !!

wintersocks

annieb4 and caligirl3,

I too feel the same way! my surgery is now scheduled for the 15th Dec, I am stuck on what if I need the loo?? I know there is a catheter. I mean the other, it's really bothering me a lot that bit of it! I mean when can we go to the loo alone?

I am also coming home alone and I am concerned about that too.

I keep thinking I am relatively healthy (after other health issues have put me in hospital for the last three years) and as the date nears I have this nagging voice that keeps saying 'why are you doing this??'

Seashore

I got my last drain out today! The nurse also said I could start gentle massage on the hard area in the upper section of left breast (or foob, but I already think of them as my breasts even with the DIEP scars across them). Some of you mentioned concerns about needing to go to the loo while still in the hospital - being on all the pain meds caused constipation until the last night before I was discharged from the hospital. Hope that's not TMI!

debiann

Wishing an easy time to all having surgery. I'm almost 8 weeks out. Your mantra for the early days needs to be "It gets better." Sometimes you get in a funk because recovery doesn't seem to happen fast enough, but before you know it you'll be back to your normal routine and feel more like yourself.

 If you're going to be on your own during recovery prepare your house in advance. My DH left me alone one afternoon. I was thirsty but I could barely reach to get a glass, then couldn't bend to get the juice from the bottom shelf of the fridge. I felt so helpless I cried.

Adjusting to your new body takes time. So far I'm loving the new tummy. The lack of nipples is freaky of couse, but the scars are healing nicely and will eventually fade. The new breasts are fuller and shaped nicer than my saggy old ones, but the lack of sensation is really weird and a little hard to get used to.  

For me, the visual changes to my body were not a big deal. My post Diep body is  much better than the pre, except for the crazy crop circles. But for those with pretty natural breasts the loss must be difficult. 

Good luck and God bless all.

Teacher64

Winter socks - by the time you need to you will be able to get to the bathroom

Debian - yeah for being drain free

LAstar

CaliGirl & WinterSocks & AnnieB4, I am with you on the pre-surgery nerves. Mine isn't until Jan 21, but I just had my first surgery anxiety dream last night. The hospital was right out of the 1800's and I handed all of my surgical gear to hold while the only operating room was in use. I was sitting on a hard bench with my IV supplies dragging the ground and thinking "What am I doing here? Is that sterile?" I'm having a uni-DIEP to correct a complication from my 2012 DIEP, so I've been here before but it's not really helping. I don't look forward to having a numb belly like my numb hips. But this necrosis has got to go and it will be nice to be symmetric again one day. I'm working hard, getting work hours in, and saving a lot of fun videos to watch in Jan & Feb. Good thing we have the holidays to distract us while we wait.

Teacher, how are your tats? (Tittoos made me LOL!)

Janet_M

Caligirl3- Strong girls cry.

I consider myself strong and I cried my way through 2013. Even though I was pretty solid in my soul - I had a lot of fragile cracks that only started to reveal themselves after BC. I remember the first time I met with my PS and he explained the procedure and I know in my gut that DIEP was what I wanted, and he asked why I was crying - and I didn't even know that I was. I think it was because of the loss. Of knowing that the body that I'd always taken for granted and had served me so well was going to be rebuilt. The week before my surgery I cried every day in the shower. I've got to say - I had great boobs. I never had kids, and they remained small and perky and I always liked looking at them. So before my surgery I just started talking to them - and thanking them, and allowing the change that was about to happen. I did the same to my stomach when I was lying in bed. And even though I was confident in my decision, there was always a part of me that thought 'What the f*ck am I doing?!' I couldn't imagine myself with a scar across my abdomen, and nipple-less breasts like a Barbie doll.

So yes - everything you are feeling is normal. It's a lot to absorb, and takes a lot of commitment. And it's really scary. But it's also safe, and pretty fantastic. I'm still amazed that my boobs were made out of my stomach and I'm really proud of myself for doing it - AND they look really good. I don't love the scar on my belly - but I don't hate it either. It's just another part of the new me that I am getting to know. And it's pretty cool that my excess fat was put to good use. The months before my surgery I ate whatever I wanted and now I look down at my boobs and see a lot of very delicious meals. I do miss my original smooth body, but I think about it less and less often. And I also like the way I look in clothes. Naked is a different story - because it still catches me off guard sometimes when I see myself in a mirror, and part of me still expects to see my teenage self - but I'm getting there. And, more importantly, I feel great.

Coming to term with things is not a linear process. So don't be hard on yourself and accept the crying as a necessary part of the process, and don't question whether or not you are strong - because you are.

Janet

caligirl3

annieb4: Here's to a safe and speedy recovery. We will get through this. We have to trust our instincts. There is a reason we are leaning towards DIEP. Now, as many ladies have said on this board, we just have to show up. Put our trust in the hands of the experts.

wintersocks: LOL I was obsessively thinking about the exact same thing! All I could think of at first was, how on earth will I be able to clean myself! I wish you a safe and speedy recovery. It looks like my surgery is scheduled 5 days prior to yours. I will fill you in on how it goes.

seashore: Congratulations on getting your last drain out!

debiann: I'm glad to hear you are doing well in your recovery. Its good to see every ones milestones in their recovery. It gives those who are just starting their journey hope.

LAstar: What a funny dream. I know how you feel. I have weird dreams on the days I am especially anxious. I will let you know how my surgery and recovery goes. Feel free to ask me anything you want.

Janet: Thank you for your kind comforting words. Your comment about looking down at your new boobs and thinking about delicious meals made me laugh. I'm glad to hear you are doing great. It gives me something to look forward to. I know that crying does not mean you are weak. I just feel super emotional lately. I go to sleep feeling afraid and I wake up feeling afraid. I can't wait to get this all behind me.

Teacher64: I have read some of your posts. It is so kind of you to continue offering your support. I am glad you are doing well in your recovery.

You are all such wonderful,strong,compassionate ladies.

iowagirl1

MD Welcome and thanks for joining. I am 8 1/2 months out and feel like it's pretty much downhill from here. Sounds like you have a full plate with a career and a growing family. Hope all continues well for you.

debiann

Janet, your post really summed up well both the sense of loss and the sense of pride at how we faced our challenges. Before surgery I told my dh that outside of immediate family I wasn't telling anyone I had a mx. Yet when it was over I discovered I wanted to tell everyone. I was proud of the decision I made and even prouder that I survived such an ordeal. I thought I would feel ashamed I lost my breasts, like I did something wrong, but I don't. I feel good saying I'm doing what I can to stay healthy. And I truly don't feel like I lost my breasts, they've just been restuffed, lol. Nipples are another story, they are missed. 

Also, I am amazed at the science of this surgery, amazed that it is even possible, and I love telling people about it. However you do need to be prepared for the people who tell you your lucky you got a free tummy tuck. They don't mean to be hurtful, they just don't know how to react. I see the tummy tuck as a plus too, so they are not so far off base.

Yes, of course I'd take back all fat to have not had cancer, but I can't change that fact. But the sudden weight loss has really inspired me to work at maintaining a healthier weight and lifestyle. I feel better, I look better (at least with clothes on) and I'm exercising more & eating much less. I hope to never grow that awful belly back! I've been wanting to ask those further out how they did keeping the weight off after surgery, but I'm afraid of hearing that it could return.

ChrisInPA

Debiann, prior to my surgery, I joked all the time at work about "shiny new boobs and a tummy tuck" - it seemed to relieve the uncomfortable situation with peers when they asked about my upcoming procedure. Today, I am just at 6.5 weeks out, gone through a glued suture breaking open into a huge open wound, just this last week had that beast sewn together with regular, non-dissovable sutures, am swollen like crazy where breathing can be restricted at times, and I still can't walk standing up straight. I am 5 weeks from having those sutures removed and at least 3 weeks from being cleared to go back to work. I keep thinking that people opt for 'tummy tucks' all the time, and just keep saying "WHY would someone volunteer for this cosmetically??" Can't wait for the first person to approach me and tell me how "lucky" I am. LOL!!!!

Teacher64

LAstar - the tattoos are looking better today, less pepperoni looking and more normal I look quite different from the original me. The areola are bigger, different color and the nips are bigger. The breasts, of course, are different. I'm still adjusting to this new me, but am thrilled to be finished to have time to adjust and live in this new me.

annieb4

Teacher..I bet it feels good now to just breath and take it all in that you are finally done with this..I can't wait for that.

I know these next couple months are going to fly by, they always do, so will give me less time to think about it all.

Hope you all have a fabulous weekend, and next week only 3 days of work, woot woot..and am excited because this is one time I don't have to watch what I eat..The more I eat, the bigger the boobs !! (of course the ass always has to butt in and take her share)....:)

LAstar

lol, Annieb4!

Teacher, I'm glad the pepperoni phase is coming to an end. It's such a process getting used to our new bodies. I ran across some pre-surgery breast photos recently and, instead of seeing enormous pendulous breasts ravaged by breast-feeding, I saw smooth unscarred benippled breasts. But now I go without a bra most days and instead of F cups I'm working toward C cups. We take our silver linings where we can find them.

katcar0001

I have read good things about enzyme for scarring, esp. Serrapeptase, which breaks up fibrin. It is a generally safe supplement, but check with your physician about potential side effects or interactions with meds you are taking. For sure don't take it with blood thinners.

Kat

georgiagator

Thanks, Seashore for inquiring about my surgery and progress. I am glad to know you are doing so well.

I returned home yesterday after my surgery and diep reconstruction. Things could not have gone better for me in the hospital. Surgery took just over 8 hours, after which my first consciousness occurred in a beautiful room of a dedicated women's surgical unit. There was discomfort, but just about the only pain I experienced was during deep breathing exercises or getting out of bed. I was out of bed and walking the hall on the second day. My husband was allowed to sleep in my room and he spent nights 2 and 3 just a few feet away. That was very comforting for me and it helped the staff with bathroom and walking activities.

The staff there were wonderful and very compassionate. I have no complaints at all during the 3 nights and 4 days that I was a patient at Northside Hospital Atlanta. Pretty good report for a 25 year bc surviving 61 year old !

My incisions look very good and my tummy hasn't been this flat since I was 23! My foobs are looking pretty good, but I am sure they'll need some fine tuning at stage 2. Regrets? None at all. That's not to say the recovery is a walk in the park, but with a good caregiver it is manageable. Thanks to all who went before me and shaded their experience and wisdom and best wishes to those whose dates are coming up. Debbie

Luckygirl27

Hi drjr,

I have recently been diagnosed and will be having a bilateral mastectomy. I need to decide on what type of reconstruction I will be having. I am located in New England and will be traveling to Boston for my surgery. Can you share the hospital and doctors that you used? Would you recommend them? hearing everyone's stories have been so comforting and informative.

drjr1968

Luckygirl27, hello and welcome to this site, I happen to find it after I had my surgery done. I wish I had known it beforehand so I got some inputs from other patients who had it before. Anyway, I think this DIEP is still pretty new procedure but has good success from a lot of patients and it is FREE if you have cancer. They also do it for breast enhancement if you want some boost in that area. I am in my late 40's and everything is going downhill this year. Just had R knee and bil. carpal tunnel release surgery then I find out also got breast cancer. At the time when I got diagnosed, my thought was, that's  the only thing to look forward to,  having bigger breast and flat belly, why not? Also as my Plastic Surgeon pointed out, it has more pros in the long run to compare with having silicone implants instead, like less chance of infection, your body recovers quicker from surgery, you would not need another mammogram in the future (only for Bilateral mastectomy), you would not need to come back to check for leaks or to change it every 5-10 years (I think for silicone), once you are recovered and done, you are DONE. Of course there are cons like length of time of surgery (mine took 11 hrs.), longer time to schedule and wait (need 2 plastic surgeons, breast surgeon and whole day booking in OR), and anxiety, mine was like what if I don't wake up after 11 hrs? and what if my insurance won't cover it since I only have stage 0 cancer , they want to do Lumpectomy with Radiation first, and I said NO. Had recent sensitivity to the sun (breaks out in a rash) and I don't think I can tolerate radiation, plus I heard a lot of complications from radiation, no matter how safe they said it would be. Of course, got that guilty feeling of just being vain, too much surgery already, what if my body can't cope with it. Mine was done @ BWH with Dr. Erdmann-Sager, excellent plastic surgeon. She would explain to you what I just said and give you choices. My only problem was that I did not get DIEP pre-op paperwork from her secretary (she's new and already got fired), regarding what to expect, not to take coffee, I only got the list of meds not to take pre-op. But now, I am 6 weeks post-op, I still believe that I made the right choice, no chemo or radiation needed (I would have if I decided for Lumpectomy) because my final biopsy came back for micro-invasive carcinoma.  And my new foobs as they call it looks fantastic and finally got a flat belly. I am still dealing with lots of aches and pains, but it is getting better.

More tips for those planning this surgery, when you finally get up on the 3rd day, it is hard to stand straight. They tell you not to use your abs, and you are going to stoop, but you have to keep a good posture as you can possibly do. PT did not told me about this, they only concentrate on arm exercises. But try to walk with knees slightly bend and your butt out, keeping your back straight and stomach in, thus preventing back spasm which I am still suffering til now.

Goodluck and happy healing to all.

 

ChrisInPA

Well, my sutures from the abdominal wound went in outpatient on Monday, and starting Tuesday night, I have been swelling like the Michelin man (as I now date myself). PS today said 1. I have Trunk lymphodema in my abdomen, 2. There is nothing that I can do about it and 3. It could take a few months to go away. I asked about Physical Therapy and was told to just let it all resolve on its own time. I don't have time for this, people! Last week, my employer was sold and I am effectively out of work in 3 months (new parent is out of state) and I need to get PAST this %&$# surgery and start focusing on a job search (like I have the mental energy for that right now).

Anyone have general lymphodema suggestions like food, supplements, herbal teas, LIGHT exercise (I am only walking right now). I really, really need to get on top of this as soon as possible.

Help?