DIEP 2014

k79miller

tbrady...I was supposed to wear the compression & the donuts around the new nipples until all of the stitches & scabs were gone, 4-6 weeks.  I'm about 4.5 wks out from stage 2.  All of the stitches are gone but I still have some scabs.  I don't wear the compression all the time.  I was out in the 100º heat Friday & yesterday so I didn't wear the compression.  I also started not wearing it at night last night.  So far I haven't noticed any difference when I don't wear it.

Georgie...Once my swelling went down my nipples went down to about 1/2 the size they were immediately after surgery. 

Sarahbb

wow, so much has happened while I was away!! 

Sweetie: how much longer are you in the hospital for? Happy your WBC is going down!

Andrea, it's so disappointing when we have our hearts set on something, to be told in the end that it can't be done. You've been through so much, I hope the surgeon can do a great revision. But I also think you could speak to those specialists in NOLA or PRMA, they have other areas that can be used for flaps, maybe your dr doesn't feel comfortable doing it because of lack of experience? 

Lipgloss, wow! Wednesday! I will be thinking of you and wishing you a fantastic outcome!! And will look forward to your story post-op! I can't answer the post op question, but am curious to know the answer as well, I live 2 hrs away from my dr and the hospital where I will be having surgery.

MsW, wow, no pain meds! Amazing! Count yourself lucky. I wish that we're me. Some of us just have different pain thresholds, I know mine is very low. And I have been using things for my back pain for a few years now, so I'm worries the pain relief they will give me won't be adequate, since I need so much to get any relief. 

Tayloriffic, so awesome to hear you are 10 weeks out and happy with your results! I know I will be looking forward to being rid of my belly paunch as well, it's the only major plus I can see in all this reconstruction process. Having read a lot of these boards, it seems like stage 2 is usually a very easy recovery comparatively, but if you have lipo, there is binder wearing that goes on. Hopefully someone who has been there can throw their input in!

Pzercher, I don't think you sound sour at all, I think it's normal and maybe sometimes the ps's need to be reminded that we are not going in for cosmetic improvements of breasts, but trying to get back to normal. And maybe they forget that point, that everybody loved their breasts before, no matter the shape and size, because they are ours, and we have lived with them our entire lives. I can't imagine that the transition could or should be easy. It makes sense that it would be a journey full of ups and downs, even when I sit here imagining what I may experience when I go through what you and the other women have been through, I have ups and downs just in anticipation. I think it's important to give yourself permission to have any feelings you have, because they are all valid and important.

K79miller, maybe look into the breast reconstruction law, because it seems to me that if you haven't been restored back to what is normal for you, then they would be obliged to go back and fix it. Why should you be left with something that makes you unhappy? 

Teacher, you crack me up! You bruise if it looks like you might bump into something! I think I'm the same!

As for me, I went to the ER this week with really bad chest pains, they ran all the usual heart attack tests, the dr said he thought GERD, and I think it has to have something to do with the lo carb diet I have been on, but who knows really? I was pretty embarrassed, but all the staff were very nice, they said it's better to come in just in case. I have a follow up with my regular doc on Monday.  It was very painful while it was happening, like stabbing right below my left breast, under the rib. Just happy it's finally subsided. Hoping it doesn't come back.

gila4936

So glad you're home, Sweetie!

Teacher64

Sweetie - so glad you are home and drain free. Big hurdles.

Pzercher - not sour. You sound realistic and that's the way it should be. When I saw my PS after stage 2, I told him I was was quite dismayed about being so black and blue. It was shocking to see the results of stage two. My PS said to give it time. That's always the answer and he's been right so far. He seemed to take my comments in stride but was pleased that I liked the fat grafting over my pacemaker and the leads because he said that was a challenge. It had nothing to do with the reconstruction but has made me feel the most satisfied.

Tbradyful - I'm tired of compression, too. I was told it would be 4 weeks at 24/7 and then 2 just at night like after DIEP, but that has been amended because of the bulge and no time is being given for the change to night time only. I'm thinking compression may be a way of life. Ugh!

Tayloriffic - glad you are pleased with your results. I was told the twinges are nerves regenerating and sometimes scar tissue pulling. Stage 2 is an in and out (no burger!) for whatever you want tweeked and adjusted. I got nipples, side breasts removed, ab scar revision, and fat grafting to fill in divots and dips. I went in for 7:30 surgery and was home by 3:30. The first couple of days I was SORE. Other than an allergic reaction and needing ultrasound treatments, I'm pretty normal. I still have to adjust what I'm wearing because the nipples are still gi-normous!

Lipgloss- my first follow up was 10 days and then just with med assistant to get drains removed. Then it was at six and then 8 weeks after DIEP.

MsW2012 - I stopped pain meds about a week after DIEP because I didn't like the side effects. I used them for just a day after stage 2 because I was on Benadryl due to an allergic reaction. I got lots of sleep.

GeorgieGirl - I was totally surprised with how I looked after stage 2...size of nips and the extent of bruising. I look at the size and shape of my breasts and am pleased. Some of the scars from the first surgery have begun to fade so I know that the newer scars will, too. When I look at my left flank and then the right, I cringe because the left is smooth and the right is lumpy.. Looking at my abdomen from the left side, it still looks flat but I can see the beginning of the bulge. From the right side, I look about 4 months pregnant. I cannot stand to have a waistband touch it and just want it to go away. The worst part of the bulge is that it has impacted my ROM on the right side. I'm going to need lots of lat work whenever I get to see my trainer again.

Anonymous

Regarding ab pain twinges and/or stinging....yes I have experienced that. Weird, but no big deal other than my wondering if I had something rubbing or irritating the area...which I didn't. Chalk it up tothe Weird Sensations After Surgery thing.

Pain Meds...I was never in what I would characterize as pain, but I *was* uncomfortably tight at times. I stayed on a med schedule for @ a week, mostly to insure that REAL pain did not get ahead of me.

ChrisInPA

Greetings from PA!  Another Flapper '14 checking in.  

Only up to page 157, so still have some catching up to do, but wanted to post before I run some errands this afternoon to start knocking out my surgery shopping list.

Thank you everyone for your hints, suggestions and cautions.  Good to know about Wilbur!  Guessing I can blame him for any drug induced actions like phone calls and internet posts I won't remember as well as the frightening thought about whipping up the hospital gown and flashing anyone who happens to walk by.  LOL!  I told my sister that there is a Breast Cancer Santa and if I do or say anything inappropriate while in the hospital, it is just him keeping me on a leash and preventing me from doing or saying something even worse.  Works for me!

I saw a few asking about DCIS and the decision to do full BMX.  I am one of those, and my reason was because I didn't want the worry or stress of having mammograms and ultrasounds every 6 months for (at least) the next 5 years - and then losing sleep waiting on the results to come back.  Everyone is different - and my BS laid out all options equally with their pros and cons.  After I told him to go for the BMX, he told me that if his wife was facing the same DX, he would hope she chose that same path.  Made me feel better - and I don't regret taking this path at all.

The surgical works of art (love that) are scheduled in October at UPenn Medicine and I am really looking forward to it.  The surgeon wasn't available to do this when I had my BMX, so my BS did a skin saving procedure.  Fine in the winter, but uneven and lumpy does not make for a good summer when you can't wear bras or bulky sweaters.  Yeah, I will be sporting a pair of knee caps on my chest for a while until stage 2 and nipple reconstruction, but I can't WAIT for my clothes to fit right again!

This forum was a huge relief to me last winter when I was DX and scared.  Never registered because questions were answered before asked, and in most cases, before I even knew to ask.  This go round feels different though.  The unknown was a heavy weight, now it is just upward on and onward and I have pages of notes from reading this thread that I now need to go back and organize so that I don't forget the advice given!

Andrea623

Sweetie, I'm so glad to hear you're back home and doing better. Gentle hugs!

Georgie, I've really enjoyed the women on this thread. I'll keep reading to see how everyone is doing, but I guess I'll have to head over to the Exchange one now. It's like leaving the school you loved to start at a new one.

Sarah, thank you for your words of encouragement.

May each of you be blessed in your journey!

Seashore

GeorgieGirlKC - the time has flown by since my surgery.  My BMX with TE went well and best news was that the sentinel lymph nodes showed no cancer!  I had no problems with anesthesia, other than some specific complications getting IV into left arm (since right side was where the lymph nodes would be taken).  After surgery, my recovery progressed in the hospital quite well. However, I didn't want to look at the incisions.  I was released the next day.  Even when I got home it was still really hard to look.  I thought I was prepared, from seeing other pictures, but not when it was me.  

I'm so glad we got to meet up before our surgeries.  I know what you mean about "feeling lonely".  I am blessed to have family/friends to stay with me at home during the day.  When I'm trying to share what I am feeling with them, I am not complaining, but I can tell they don't get it - nor am I looking for "answers" from them. Heaven knows how we research and research after hearing those dreaded words, you have cancer.  Even with the support of my husband, family and friends, this journey (6 months for me and I know yours has been longer) can still be lonely at times.   So we can come here for each other!  

Lipglossmommie

Thank you so much MSW20, that helps a lot. 

LiLi-RI

Hi all: I experienced a real downward spiral this weekend. You may recall that I had to have another surgery a couple of weeks ago to do a graft on my right breast. On Friday, my visiting nurse and I noticed necrosis at the site of the graft......not another surgery? I meet with PS on Tuesday. I have not showered since the surgery - only sponge baths - YUK. I feel so gross. I am just so pissed. 

I agree that this cancer journey starts strong with lots of friends trying to help, but now there is silence. People do not understand that the cancer journey lasts a long time after the initial diagnosis.

There is both physical and emotional issues which can last years.

We all have different routes. 

My source of strength lies in all the posts and advice from all of you!

Thank you for being there for me.

Welcome to the new ladies!

Sending healing hugs to all.

Lisa

Lipglossmommie

oh Lisa, I'm so sorry. (((((Hugs)))))

I'm new here and have my surgery Wed.

I wish I could offer you some advice. 

naiviv

Lisa,

So sorry, all these detours suck !!! and I am so tired of them.

Sending you strength.

Take care (hugs)

Vivian 

Andrea623

Vivian, how are you doing since your lat flap? My PS said it was a possibility for me, but I've read so many horror stories about it, I didn't want to try. Plus I really didn't want to lose that muscle, even though I'm pretty much a couch potato.

naiviv

Andrea,

I have no horror stories to tell.

My pain was well taken care of hydrocondone the first week, after that it was advil and maybe half pain pill at night. I went to a work conference at one week post op.

You are tired, your range of motion is limited in the shoulder /arm. Mine is improving daily and as soon as I lose drains, I will be starting therapy. I still feel some pain/muscle tightness/spasm if I move wrong when in bed. I have been trying to slow down to get my drains to stop producing. They are still both over 30, not sure they will come out at week 3 check up. I lost 2 breast drains at week 1.

Remember they do not take your whole muscle, only a piece. I have a scar straight across to almost center of back. It is healing well and is a nice thin line. This muscle is tunnelled under your side and depending on how much skin you need your flap may be football shape.circle for a future nipple or in my case it is under my nipple about three inches wide.  The breast looks squarish and a bit loose in skin. This will all be taken care of in phase 2. Goal for me in phase one is a healthy flap that is moved over and establishes a good supply. In phase two it will be sized, I will loose flap piece and fat will be grafted. My outer breast will have the scar that resembles an anchor as in a breast reduction.

I have experience with Diep. Diep was a lot harder to recover from. I still have some tightness and muscle spasms in belly as well as bb issues. But the right breast did well and it was shaped and sized smaller in phase 2. Although still sore and incisions closing. My breast is warm, soft ,tight, with my nipple placed where it was when I was a teen. Righty looks great in a tank top with no bra size b/c. it is still swollen and needs to come down a bit.

if you have any questions, if you wish to talk about it just pm me and ill send you my cell

vivian

rose111

Lisa,  I have been thinking of you and wondering how you have been doing since your second surgery.  I am sorry to hear of the necrosis. Good luck on Tuesday and I hope your PS OKs showers for you very soon. Rose

enjoyevrymoment

Lisa- boo to that misbehaving tissue and I am also sorry to hear you are going through this.  I would be struggling as much as you or more, there is no way anyone gets all that happens to us both emotionally and physically, and even here our experiences vary widely.  There is this verse in the Bible that says not to compare yourself to others, and it is a verse I cling to.  I didn't even look at the pictures of others for that reason.  It stinks that you are going through this but I am ready to call your PS and tell em for you "FIX THIS".  Let them know we are all rooting for you and cheering your surgeon on for a successful fix of this issue.  We are sending hugs and hoping that the necrosis does not get any worse and that you soon feel better.

Vivian glad you are doing well.  That is interesting about your experience with DIEP being tougher.  Glad you are recovering slowly but surely.

To the person asking about the tingling/burning in abdomen, yup that is common and does eventually go away.

Hugs to all, appreciate each of you!  Welcome newbies!

goldie4040

Hi all,

Sounds like we have a few depressed people, a few wound problem people, a few who are so over this whole thing....

I am sorry it hasn't been a great weekend. Maybe something is in the air.  I came home from babysitting my grandkids last night, and I was so tired and in so much pain.  I sat in the car in the garage and cried really loud for about 10 minutes.  I agree, after a while the isolation gets hard, and the fact that it seems like diep is your life and there is nothing else.  Oh, how I  wish we could all be together and then we wouldn't feel so isolated.  I did feel better going to lunch with my BFF the other day, and this week I have an appt everyday.  One day I have two...ugh.  So, I don't know if that's good or bad.  One appt is with the counselor at the breast center at the hospital  I am going to see what they have to offer.

Sweet, so glad you are doing better.

I don't know why so many of us seem to be on a down swing, but I have a feeling it's going to be a better week for everybody. 

Sarahbb

Goldie, I was so moved and sad reading your feelings of isolation, and yet I feel so similar. I haven't told any of my friends, other than my one best friend. I almost feel like I wouldn't have the energy to talk to them. I agree that it's so much easier to communicate here. I wish I was nearby to lend some hugs! Virtual (((((hugs)))))) I am bolstered though knowing that when my time arrives for the surgery that all of you new friends will be here to cheer me on through it all!

Sweetie are you home yet? So happy you're getting out of the hospital!

LiLi-RI

Thank you Lipgloss, Vivian, Rose and Enjoy!

I think maybe the start of school and end of summer triggers a new beginning within us from when we were school-age....some of us are still in the middle of our journeys which may be why some of us our down-there is no new beginning in sight.....yet?

I hope all enjoy a Happy Monday and May we all get one step closer to our next step in life!

Lisa

Janet_M

I'm so sorry to hear about all the sad and wounded this weekend. Lisa, one of the hardest lessons to accept is that people are eager to see you as 'back to normal' and start to treat you that way long before you are healed. It really sucks. After my surgery I remember walking around in my billowy shirt looking seemingly normal. Inside though, I felt like I'd been sawed in half and I was exhausted from thinking about cancer for two years. And, tired of keeping a stiff upper lip so that I could spare everyone's feelings. And, and, and, the list goes on. 

Everybody rallies around during the visible stuff, like chemo and surgery, and everyone is so generous with flowers, and car rides, and food. And then your invisible. But Goldie calls it a downswing, and it's called a 'swing' for a good reason. The swing will swing the other way one of these days. I know it's hard, and I'm sorry.

Just have faith that you've done the right thing and that shitty days are part of the process. You are still healing and there is no magic formula or timetable for feeling strong.

Here's my inspirational thought for the day. I was at a store the other day wearing my horrid fleshy compression glove for lymphedema. The sales clerk said 'Oh - the carpel tunnel finally gotcha, eh?'. My first thought was to punch her in the head. My second thought was thinking, 'No, the big C got me'. And my next thought was the 'Big C' gave it unnecessary importance, and from now on it would only be thought of as 'the little c'. 

I hope it's a better week for everyone who is recovering.  

Teacher64

LiLi-Ri - you are so right. From the time I was 5 the school year defined my life. Throw in college and a career in the classroom and this is the beginning of the year, yet I'm not at a new beginning. I'm also thinking my expectations of stage 2 were too high. I've decided I need to give it more time because it took my bb over 5 months to look decent and it was a tiny thing compared to my breasts or abdomen since the work on them was so extensive, I'm going to keep telling myself that in time everything will look better. Every experience of our lives changes us and this one has been a doozie. It's normal to get down sometimes, but I'm not down for the count. School may begin today with excitement for children like my kindergarten grandgirls, but I'm going to have lunch with a friend who has cheered me on because I'm 3 months ahead of her. It will be a "flash and hug" lunch and time to appreciate what I have achieved with the help of so many thus far. 

I am blessed to have found his site and all of you. Ladies, have a wonderful day.

naiviv

enjoy,

I definitely found that the abdomen wound diep is tougher than the back wound for lat.

I am 3 months from diep and still feeling it.

Still have tightness in belly and waiting on pt to find out what I can do. But I was able to use my legs and abdomen to get up/ in and out of bed. No walking issues. With the lat all my issues were at breast level and up.

I look forward to being finished.

Vivian

annieb4

Sweetie, I am glad your doing better..Keep healing and getting better.

Andrea, I was so sorry to hear about your results. It is so hard to get here in the first place, deciding this is what you want to do and being OK with that decision, then to be told you aren't able to just sucks. I am afraid that is what they are going to tell me..but I am still hoping it will be OK.

Yea it does sound like alot of us are not doing so well emotionally (me included). This is such a lousy thing that we didn't ask for or want. The whole process just seems  to go on forever.  Thank God for this board that we can come here and vent and cry and be totally and completely honest and no one is going to take offense or tell us to get off our pity pot. Pzercher, I think you hit the nail when you said we just want to be back to normal. The only thing is  we will never be back to normal. I would take my saggy baggy crooked after 4 kids boobs back anyday, and I wasn't even that fond of them. We just want to be OK and healthy and no more surgeries and no more doctors and no more hospitals or pills or anything else. But, here we are, one of the unlucky ones that got this damn disease. But we are strong, and we are here for each other, and we will be OK .

Sorry if I was rambling.. I hope everyone's day turns into a good one.

Andrea623

I wonder why this week has been difficult for so many of us? I thought I had put all my feelings about cancer behind me, but now with surgery #4 on the horizon, they've all come rushing back. My friends don't understand why I keep trying either. They think I'm cancer free so why have more surgery. It's so hard to explain to someone who hadn't been there.

Annie,I hope you'll have better news than I did about the surgery. My fingers are crossed for you!

gila4936

ChrisinPA, welcome! I'm also someone who went the BMX route with DCIS and I'm glad I did because they found atypia in the "other" breast. 

I don't know if I'd say I'm down this week but definitely anxious. My Stage 2 is this Friday. Today I had pre-admission testing and right after that did the phone registration with the surgery center. I got two completely contradictory instructions as to which meds I should and shouldn't take the morning of the surgery. Tomorrow I have my pre-op with the PS so I'll get that figured out. 

Part of me is so ready to get this over with and another part is wondering if it's too soon, but I really don't want to wait more than I have to.

lovecat3

heading to PRMA sept 23 for stacked DIEP w Dr C  it's been 4 long years

Any advice very much appreciated. Excited n anxious!! Worried about pain but remind myself I'll wake with a breast!! Brings tears 

enjoyevrymoment

As you all know I have the memory of a sieve, blame Femara or menopause or both... so I will try to remember things...

Sweetie, so glad you are out of hospital and on the mend.

Lovecat best wishes in September, wow, 4 years, you will be ready for a graduation party.

Andrea just cause you aren't probably gonna be on the DIEP train, doesn't mean we don't care so you had better keep in touch....praying they do a great job with all that is done!

Saw my PS today she said I have some scarring in my abdominal wound but to do more massage but it is pretty minimal.  She was so happy with my progress and I do not have to see her until March!  She said my incisions looked great, the nips will get a little smaller but not a whole lot more at this stage.  I feel very grateful.  

As I said in a message to Janet, when we finally feel this unusual feeling called "happiness" again, we are almost afraid to feel that emotion, in my case I was almost feeling like it might jinx my future health or something, I know, that is silly.....  I have decided to trust that the things that will happen will be meant to happen and I am going to rejoice in a good report!   See Onc in October, get MRI and see gyn and then follow up with Onc in April if all goes well.  

Maybe it was that getting away thing that helped me, mood wise, and I know some of you aren't there yet but trust me it is like when you waited for other things, it is so so appreciated more and worth it when you will be able to get away and forget for one dang minute you are dealing with the beast.  (little c, right Janet?)  Sending you beach sand for between your toes to get you thru till then!  (and I KNOW you have your toes painted of course!!!)

Hugs to each of you who are dealing with the emotional parts, it is something you really don't understand unless you have been through this.  

Cindy

littlesara11

Andrea, so sorry about your disappointment with the DIEP. I did have the DIEP surgery in 2010 but, due to a complication lost fat from a very small flap. However, take heart, I had  a small implant put under the flap and some fat graphing.  Later, developed a contracture and as a result a very tight left side. Just had a scar removal and a new implant  (very small 165cc) two weeks ago and already my left side feels so much better.

Hopefully, with the release of the scar tissue you will lose much of the tightness. Contracture are a nightmare for us and for PS as know one seems to know  quite why they occur, several  theories. My PS feels mine is due to all the scar tissue and trauma on my left side.

Wishing you the best on the 9th. Also, have you considered any other type of flap surgery? Just a thought.

 

 

 

trish01254

I am now 75 days out.  Good news from me.  My "hernia" pain is now gone.  I can finally sneeze without the stabbing pain in the abs.  Also, I hike Mt. Monadnock this weekend.  It took 4 hours round trip.  Loved that I could actually do this without any twinges of belly pain.  Tomorrow see the PS for first appt since I had final drains removed.  Not sure how much tweaking will be needed with stage 2.  I dont have dog ears and the new boob is pretty symmetric with my other.   Hang in there everyone.  Healing wishes for all.

naiviv

cyber huggs to all, I wish we could all get together for a huge slumber party .

Praying for everyone to feel better.

Vivian