DIEP 2013

Kat-ski

I had a bilateral with tissue expanders last September.  Novermber, the left side was infected so both expanders came out.  Last plastic surgeon said there was nothing she could do for my concave look.  Chemo done, 28 rads completed in March 2013.  I am ready for the next step and am looking at a double DIEP but the nurse navigator said it is only done at the time of the removal of the breasts.  Do I have any recourse or do I have to look this way for the rest of my life?  I just can't believe it can't be fixed.  I do not want implants since the expander got infected.  Anyone know anything?  Kat

christina0001

nihahi - oh you poor thing, with the compact that got stuck in the cupholder... I could so feel your anguish. It feels awful to be at that point. You asked if it is normal to see PS after surgery. Well for me, I saw my PS two days after being discharged from the hospital, and I see her again at the three week mark. I am really surprised we have ladies here who have not seen their surgeon or at least a PA or NP three weeks after surgery. I mean, if it is a serious enough surgery to keep us in ICU for days, I would think it would be appropriate for us to be seen by medical staff within the first week or two after hospital discharge. If you have a concern, don't be nice about it ladies - speak up and demand to see the PS or at least the PA/NP (in my experience, the PAs and NPs often take more time to listen to concerns than the doctors do - I love them!).

bluebird - what a bunch of crap. Kudos to your husband to insisting the PA take a look at you.

mommalou - sorry about that wound, that sounds really bad.

Faith, your bunny sounds so sweet. Sorry to hear that she is sick. Pets are so special. My cat passed away last October and I still get tearful from missing her. I guess all we can do is enjoy every minute we have with them.

Yesterday I was out all day, and I forgot my abdominal binder, so last night I was in pain all night. It was rough. I guess at some point I did fall into a good sleep though, and this morning I woke up and was in a good mood with low levels of discomfort. Weird! but good. My brain just feels a little more normal today. I don't know how else to explain it.

The swelling in my natural breast that was lifted, has really gone done. But my DIEP breast is still quite swollen. At this point, DIEP boob looks a good cup size or two larger than natural boob. I hope it will go down? Is there anything I can do to help reduce the swelling? In my mind I am starting to call it "monster boob" because it is big, red and angry.

Morningsun1

christina, big is ok from swelling, but red and angry gloob scares me a bit. I would let the PS know.

MartyJ

aspinner - that nurse navigator has no idea what she is talking about and should not be allowed to give guidance.  Free flap surgery does not have to be done at the mastectomy.  A lot of us would be in real trouble if that was true.  I am not sure where you are living, but there are quite a few very skilled plastic surgeons who can work well with radiated tissue and create natural breasts using fat from the abdomin, upper glutes, lower glutes or thighs.  Where the flap comes from has to do with how you are built and where the fat is available.  Please know that there is help available!

goldie4040

aspinner, I don't know where you live, but that seems to have a huge influence on what kind of reconstruction you are referred to.  Get on google and start researching diep flap surgeons in your area, or nearest big city.  There are quite a few women that travel to have their surgeries.  You do not have live without breasts if you don't want to. 

goldie4040

Christina, call you doc and ask about your breast being red and swollen.  That worried me a bit.

jbloom...thanks.  I have heard that before, but it worried me that almost all of us have had the abdominal CAT pre diep, and nobody else has come up with this problem.  Did you have a CAT before your surgery?  

Damiana, keeping my finger's crossed for you. Hope its an easy fix

Yes, Jeannie...I agree, an open crotch garment is needed for sure. When you find one you love, let me know. Then I will know what to get.

Mammolou...I hope you are doing better today

Anonymous

Aspinner...there are LOTS of us here who have delayed flap reconstruction for a variety of reasons....including TE failures. I am sorry your nurse care navigator is uninformed. Not all PS can do a flap reconstruction...they need to be a microsurgeon. They usually work with another PS since it is a surgery that really requires two surgeons (only one has to be a microsurgeon).



There is most definitely hope! If you don't mind sharing where you live we might be able to recommend a PS for you to talk to.

nihahi

That nurse navigator is beyond ignorant......feel free to "inform" her that she is completely....totally....utterly.....most emphatically....and DANGEROUSLY wrong! Tell her this comes from someone who has had a highly successful free flap recon done 22 years after her mx!!!!! I'm gonna go get that hammer and chisel again!!!!!!! SHEESH!!!!!

fyi.....my flap has still slightly reduced in swelling since my 3 month out appointment last month. I'm now 4 months, my ps wanted to wait another 2 months to see where things were, before we schedule any tweaking. Getting happier and happier with the gloob, still having some issues with swelly belly if I'm really active....also finding that hot days make it worse too. Didn't do much yesterday.....no swelling issues at all! Went for a walk today....skin is getting sensitive again, which for me, means it's starting to swell a bit. By the time I get to the view of Mt. Wilbur, I'll likely look 4 months preggo! Should make for some interesting photos . 

nihahi

Angel Wings:

FierceBluebird

Love the angel wings!

Thanks to you ladies for always sending a positive message and lots of good information. I also have a sensitivity to tape and have been miserable with all these bandage changes. Even the hurt free paper tape. Once it gets wet from the drainage, it sticks to my skin and impossible to get off without tearing skin.

I think I will look for an abdominal binder/tube top to hold my bandages on. My PS does not like binding or bras after surgery, but I hate the tape so much.

Faith, sorry about your bun-bun. If you want to PM me, I might be able to help. For ailing bunnies, carrot tops with the leafy greens are very good.

nihahi

bluebird.....ask your pharmacy if they have something like an elasticzed, mesh tube bandage. It comes in many sizes, and would act like a binder or tube top, but is an open, slightly stretchy mesh. Wouldn't really compress, which would make doc happy, but would be tight enough to hold dressings in place without tape, and conforms to body contours. In Canada, it's called Flexinet. I used it lots on my burn patients, who needed dressings, but couldn't have them taped on. 

Morningsun1

I bought two Marena Stage I compression shorts with open crotch. Used one of them once and the other one is still in the box. I just felt more comfortable with my cut up binders specially for holding the would dressings in place. If any of you can use them please PM me I will send them to you. They are size small. I am currently using two Marena stage II compression garments with zippers. One was put on me by the PS after surgery, the other I bought. They are both very comfortable and give you ton of support/compression. When I am done and if they are still in good shape, I will ask again to see if anyone else can use them.

Morningsun1

We have those here too, nihahi, the PA from ps office called them "ace wrap." As paft of the would care supply, my ps's office ordered some of those for me. Most of the insurance companies will pay for them (my did). Sorry that I had forgotten about them. You can also buy them at many stores, CVS, Walgreen, or Target...

Jeannie57

Aspinner, I, too, am a delayed DIEPer. I hope you do your research and find the experienced plastic surgeon who can give you your boobs. You deserve it! I love mine!



Tammy, I have cut the abdominal binder, too, to fit me better. I need it over the incision as well as higher up where the swelling is on the left side. I found the huge ace bandage that I wore after the mastectomy and it works, too. I should probably get a garment. I hate to spend the money! I will see how I'm doing at Tuesday's appt. and then decide.



I put on a clingy workout top with yoga pants today for my walk and, d$&n, I looked good! (Of course, I look better with clothes on than without!) I can't believe I have boobs and a fairly flat tummy. It feels like a miracle! I have somehow lost 9 lbs., too, even with Tamoxifen. I hope this encourages you ladies waiting for your surgeries. It is worth the wait and everything else!



Nihahi, I hope you don't swell and itch too much on your hike! I read up on it and it sounds wonderful, although being that close to grizzlies scares me! You and Movie just yell "Towanda!" around every corner!



Bluebird and Mammalou, may you have good healing and forward progress.

Christina, call your doc, please! "Red and swollen" should be checked out. I hope everyone realizes just how serious cellulitis can be.



Did someone ask how/when I found out I have lymphedema? After rads I asked my rad Onc for an LE therapist recommendation. I had been seeing a PT but I knew she wasn't doing everything nor teaching me manual lymph drainage massage, even though she was recommended by my cancer center. ( I later let them know my experience with her). I knew I was at high risk since 39 nodes were taken from my right armpit and I had radiation. The new LE gal was great. She taught me the massage, gave good advice and started regularly measuring my arms. To our surprise, my left arm, which had 5 sentinel nodes removed, was slowly swelling. I had recently had a skin lesion removed on that arm and wonder if that got the LE going. I felt nothing strange in that arm, no tingling, weakness or heaviness but it was swelling. So thus started daily MLD massage and compression sleeve/gauntlet. About six months after rads, sure enough, my right arm started swelling. In that case, I felt a lot of tingling and weird feelings in the arm which caused me to start measuring. I was hoping it was from too much time spent typing on bcg.org, etc. but my arm was swelling so now I had LE in both arms. Everyone's nightmare. I am thankful that I caught it early and it has always been under control with massage and compression garments. I still garden, my passion. I have to be very, very careful to keep my skin clean and healthy. I wear surgical gloves when I cook, garden, clean, etc. to try to avoid cellulitis. I slap a bandaid on with antibiotic at the slightest hangnail. No more pedicures. ( I drink a lot of water. There are things I no longer can do like go in my spa, take a hot bath, get deep tissue massage or anything that causes an excess of lymph fluid because we don't want it to pool and get stuck somewhere. It is protein-rich, the perfect medium for infection. I get tired of the stares and comments when I go out with the sleeves but having stylish sleeves, while attracting attention, make it more fun for me. My "tattoo" sleves are my favorites because I do not look like I would be tattooed on both arms and people often do a double take.The worst part of the whole thing is having to get IVs/bloodwork from somewhere other than my arms. It's a challenge for everyone and painful for me. The most frustrating thing is when medical professionals are uneducated about LE or minimize the dangers. When I was being discharged after DIEP surgery, two nurses came up to me and said they would like to know about LE because they were unfamiliar with it. I appreciated that but it was disturbing, as well. I had written on my arms in permanent marker before surgery " No BP/needles!" and I wore sleeves after surgery. I have written all this to give you information about LE so you can know what to look for, what to do and to give you hope that LE isn't the worst thing in the world. For me, it's not fun but manageable. I am open to any questions. And, yes, I follow two LE threads so I will not be constantly talking about LE here!



Good days, everyone, as Nihahi would say!

sbelizabeth

Here is my beautiful Aubrey NOT wailing.  Thank you for indulging this new grandma!

Nihahi, the angel wings photo is breathtaking.  Thank you SO MUCH for posting.

And thanks, those of you who read and enjoyed my blog post.  I can't tell you how therapeutic it has been to have an outlet to write about this fandango.  A place to blurt. 

My PS never recommended compression with Stage 1, but I went to Costco and bought their three-pack of squeezy panties.  I wear them almost all the time.  When I was in the hospital I didn't wear them, and I noticed I had a swelly belly that disappeared when I began wearing my squeezy panties again.  And these aren't official "compression wear," just panties.  I think lymphatic swelling responds so well to compression, I'll wear it forever!

Have a great Wednesday!  Katy

nihahi

Nope....ace wrap is an elasticized "fabric" bandage, that you wind around wherever you need support. It would be more "occlusive" than the flexinet, more compressive in order to stay in place, and would be thicker and warmer. Flexinet is a very, very open tube mesh. It truly is designed to hold dressings in place, not to compress. Ace bandages are meant more to give support for things like sprains, venous insufficiency, etc.

Jeannie57

Yes, my PA gave me the burn mesh to hold the dressings in place. I guess I should give it another try. She gave me three!

nihahi

sbe.....aubrey is so beautiful....thank you so much for sharing her...as I've told you before....I am denied access to my two granddaughters....I'm living the dream with your stories/photos of her.

ok.....I really have to get some stuff done...non-computer things!!! 

Later ladies!

Morningsun1

She is just BEAUTIFUL, sbe. I love the other photo too, where she is yelling "TOWANDA!"

kuka21174923

Hello ladies. I just came back from target and got some push up bras! So I'm a C but I don't fill up the whole cup. If I put on a smaller size it doesn't really work. So....., anyone else having this problem? Sports bras fit just fine because they use cups, but I'm not going to be wearing sports bras for the rest of my life!

Jeannie57

Faith, so sorry about your bunny! My daughter had bunnies when she was growing up, but not house bunnies. They are so darn cute. I hope yours heals with your tender care!



Movie, is your pup feeling better?

liefie

I posted here earlier about that nurse navigator who clearly knows ZERO about DIEP surgery, but it strangely disappeared. Anyway Aspinner, you got lots of good advice here. Maybe show that nurse this thread so she can wisen up, eh? Wonder how many women she had sent away with this clueless 'advice' ??????

Nihahi, that photo is breathtaking, beautiful enough to have a poster made! You made me tear up with your comment about your two granddaughters . . . didn't realize you were a grandma.

Little Aubrey Rose is clearly the apple of her grandma's eye, as it should be. Sbe, I'm following you closely to learn what a grandma should be like - LOL. I also have those squeezy panties from Costco, and I like them a lot.

I now have a clear indentation in and around my tummy scar to the left of my belly button. This is obviously where the flap was taken from. Anybody else has this?

Jeannie, LE is all too real for many bc patients, and it seems you are coping well. Good for you! So far I have been fortunate, but I never fly without a sleeve, even a short distance. Also have to say that for my surgeries at the Royal Jubilee Hospital in Victoria, BC, they had been very mindful of my left arm. No BP taken there, no needles, sign above the bed. They are obviousy very aware of the LE possibility, which is great. 

Morningsun1

Kuka, go to Norstrom, they have staff there to measure you and help you find the best fit. They will do all the paperwork for you to submit to the insurance company. For some of the insurance complanies, they will even send in the paper so you don't have to pay. Your insurance may not pay for them, but you will get good fitting bras.

MartyJ

Kuka - didn't your PS do some work on the breasts last week?  If so, maybe a bit more patience would be a good thing?  You boobs will change and things will fit differently.  I do agree with Tammy about getting a really good fitting - Nordstrom, a really good lingerie shop, Neimans.  Who knows where you might end up.  But, maybe wait for more healing.  Just a thought from an old lady.

Jeannie - at some point you might wish to explore a vascularized lymph node transfer.  Not all PS do them, but those that do are real miracle workers.  The procedure was developed by a Dr. Corinne Becker from France. She has spent considerable time in the US training surgeons in this technique.  It may just provide you with significant relief.

Faith - so sorry about your bunny buddy!

Jeannie57

Yes, Marty, I was excited to learn that the head of Reconstruction Surgery at my hospital does the lymph node transfer and another procedure, too.  I hope to meet with him at some point in the future when all this is done.

liefie

Wow, Jeannie, you will be the ideal candidate for a lymph node transfer! It is amazing what can be done these days, eh?

Here's a joke for you all. A naked woman steps on a scale, checks her weight, and announces, 'I will subtract 5 lbs from my weight. Boobs and brains this fabulous should not count against me!'

MartyJ

Jeannie - you might want to talk to him before this is over as they actually can combine procedures so you are under anesthesia less often and they won't have to hunt and peck for veins more than necessary.  

I had 50 nodes removed from one arm, but am fortunate that LE only strikes when I fly and resolves within a few hours.  After 28 years of only tapping one arm for veins, mine are really scarred.  Interestingly I have had two nurses recently put an IV in the strangest positions on my arm (I know you can't do arms, Jeannie).  Sort of the fleshy area on the underside below the elbow.  I thought the last nurse was going to have to stand on her head, but she got in on the first try.  Good thing they only had to work for 24 hours as they were infiltrating just before they were pulled.  Everyone, please encourage your IV nurse to be creative and if she/he suggests that lymph nodes grow back, feel free to whip out an old fashioned procelain bed pan and whomp them over the head!

sherry35

So it seems muses without a clue are the theme if the day!

I'm at emerg with a fever after seeing my PS. I have an infected seroma in my belly so it's packed as well as fat necrosis that she cut out so right boob is packed too.

She's taking me into the OR tonight!

Dreams of Wilbur in my head. Worst nightmare come true!

All along nurse said everything looks fine, everything looks good! Ya bullshit! Sorry my rant for today!

kuka21174923

Thanks Tammy, I'll have to check it out.

Marty, what do you mean? Are you suggesting that I'm impatience? Lol! I know they will change, but enough to where they will filled my bra? I like the way this push up bra looks on me. I hadn't been able to wear them before because if all the padding the have and I used to be a DD, so I didn't want to add anymore to it. Now, I feel sexy!! I took a pic and sent it to DH. His response was, who is that? And why are you sending me a pic of her in a bra? When I told him it was me he said it looked hot!

Jeannie57

Oh, Sherry35, I'm so sorry! Prayers for you, sister warrior!