DIEP 2011

KatheW

And now the latest twist.... my surgery is back on for this Wednesday with all the original surgeons. Today, as I was about to pick up the phone to cancel my hospital pre op appt, my PS's office manager called to tell me the assisting surgeon has decided to wave 90% of the uncovered portion of his fee. Apparently he felt bad that I was going to reschedule it, and didn't want to me to have to do that. Not sure what stirred his conscience, but I guess I will give him the benefit of the doubt. My husband and I talked it over briefly, and decided that for what will likely amount to a few hundred dollars I should go ahead with it.

Thanks again to all who posted to help me find new surgeons. I am encouraged by your positive stories and will be thinking of them and you over the next 36 hours. 

Kathe

bdavis

good luck Kathe... I am glad it all worked out financially.

SAMayoFL

Woohoo Kathe!!!  I will be thinking of you on Wednesday and sending positive vibes your way.  Every day after surgery gets better and better.

Jeskachi and Betsy, I too think you girls are amazing.  Your positive attitudes are an inspiration to us all!

Betsy, at 5 1/2 weeks out I am just now feeling up to walking any distance.  I walked 2 miles yesterday and it took me a little over 30 minutes.  You have been through a lot over the last 7 1/2 weeks.  I totally agree - those dang drains are really cumbersome.  Will you get them out one day this week?

Susan

bdavis

I was emailing my output details today to the PA at Dr Dellacroce's office... Usually, they won't leave drains in past 8 weeks, which is Thursday, but I am still outputting 30-37 cc per day in each... So the PA said its the Dr's call... So I will find out later in the week...

KatheW

Thanks for the kind words Susan and Betsy. I am happy it is going to happen soon, but I don't feel ready for it. To be honest, I'm not sure I would ever be ready! So I am back to riding the anxiety rollar coaster. There is no way I am going to sleep well the next 2 nights.

Anybody take tranquilizers the day before surgery??

bdavis

It will all be fine... relax and stay busy!!!

beacher4209

Hello Ladies ,i am new to this site somebody suggested it to me from "pain with implanst" I had a uni mx nov.2010 i had rads jan-march and reconstuction with 500cc silcone implant in mx side and lift with 250cc in native side. I have experienced tightness,pulling, pain, since i got the tissues expanders were put in,I thought once i got them out and had implants put in it would be better but not at all. i should say the native side is fine no pain soft and squishy but mx side feels like im wearing an iron bra still. i have had lots of pt and have my rom back but hurts to move, reach, i make feels like toture. ive been looking at the diep procedure,but not sure if its right for me or will take care of my problems. i wanted to know if anyone has had implants,and then went to diep and felt better,but i think they would have to have had all the tissue damage i have had to know if it would work .Anyone out there got info that could help me? Thanks

Heidenia

tranqilizers morning of for sure! blessings

Jerusha

Hi Beacher, I've seen your posts on the implant threads which I still read now and then, and wondered if you would find us here. I'm glad you did! I have to restrain myself from going on those threads and proselytizing...I had bilat gummy bear implants for almost a year and it was torture. I was miserably uncomfortable 100% of the time, plus I developed LE in my hand after my exchange surgery. I had chosen not to have an autogenous free flap fat transfer (DIEP, etc) initially because it seemed like "too much" -- too long in the OR, too long a recovery, etc. Implants are always presented as the " quick and easy" solution, and I think that in the vulnerable state we are usually in when making the choice...we just don't add it all up. Considering that implants are temporary, at best, it certainly isn't the shortest route. And nobody tells you about the hell of the tissue expander phase.Also many women, myself included, are told by PS's ( mine was at Memorial Sloane Kettering and did lots of DIEPS) that they do not have enough fat. I was told I'd be an A-minus, whatever that is! (BTW, Im a D!). The NOLA docs specialize in finding fat SOMEWHERE! Anyhow, I'm a NOLA girl, and highly partial to them. I encourage you to go to the "NOLA in September" site if you want to hear from a lot of happy campers. The NOLA doc also kind of specialize in cleaning up other doctors messes, so there are a lot of women with failed implants who end up there. One thing that was very important to me is that the docs work in teams , and do nothing but breast reconstruction, so they are about as speedy as they come. My bilat removal of implants and extended DIEP was only 4+1/2 hours! The care you get is second to none. I am a health care professional and I have worked in a zillion hospitals, and have VERY high standards...and NOLA was really beyond anything I have ever experienced in terms of quality of care. ( and we can drink coffee and eat chocolate right away!! Haha). You and your travel companion will be treated with such care and kindness and every need anticipated and arranged for. The hospital is kind of a cross between a 5-star hotel and a private ICU. When I woke up from surgery and felt my new breasts I cried at the loveliness of having breasts again that were soft and warm and jiggly. Even immediately post operatively, my breasts were dramatically more comfortable than with the implants. And my LE seemed instantaneously diminished to almost nothing once the rock-like obstructions in my chest were gone. I do want to tell you, though, that I am not sure if I have just forgotten how awful the implants felt and have gotten used to not having them, but over the 4 months since my DIEP, I have been aware of a return, to a much lesser degree than before, of that iron-bra sensation. I assume that I have scar tissue that has developed in the places where I had it from the implant capsules. I was aware that this might happen. I am disappointed about it, hopeful that it can be addressed in my Stage2 surgery, but overall still so so SO glad that I got rid of those barbaric implants and had my DIEP. I strongly recommend that you go have a consult with Dr.Sullivan or Dellacroce or Massey. Hope this helps, Beacher:)

treesprite

KatheW: Wow - you just never know how things are going to turn out, but a roller coaster for sure. It is cool that you saved yourself several thousand dollars by standing up for yourself! I think you have earned yourself something special. Yep, try to relax and stay busy; I would take something if I felt I needed to; most stuff is short acting. If you are all ready, do whatever feels best to you; maybe a movie, a light dinner out, your favorite funny movie as a distraction or just quiet reflection. We'll all be rooting for you come Wednesday!

Betsy: That is a lot of output; you aren't overdoing are you? Are you still taking antibiotics?

beacher4209:  welcome to DIEP 2011! another suggestion would be to do a search using the phrase DIEP after implants and see what comes up; you could also post a new thread asking your question. 

How are all you recent DIEP'ers doing?

bdavis

Kathy... Nope, not overdoing... Do remember that i had hip flap surgery in july, then output dropped to 40-50, then had DIEP flap surgery August 23 and output went to over 100... So I am working down from there... It was like my clock was reset three weeks ago... But yes, i am still on antibiotics (and a probiotic to avoid issues from the antibiotic)...



Hey jerusha! Just a side note, and i am very early in the recovery stage, but i also feel like i am wearing a bra when i am not... I was told that with this surgery it can take 18 months for everything to settle... For those who are many many months past surgery, would you say that's true?



While at SCSH, one nurse had had her BMX and DIEP done in 2008 i think... She looks fantastic and her breasts feel like real breasts too.... She said that the doctors can fix everything, so i am confident that any tightness, firmness, pulling etc can and will be resolved.



Beacher... I am glad the link worked to find us here.... Jerusha is right... Maybe also check out nola in september... Lots of implant to diep women there too.

Kay_G

KatheW, glad to hear it is going to work out. I had a feeling they were going to waive a majority of the fee. Truth be told the doc will still probably end up getting paid what a participating doc would get paid. After all, that is why they don't participate, they want the opportunity to bill more and make more. At least, I think ins. cos. pay non participating docs the same as participating, it's just that the non participating docs also bill the patients over and above that. If I am wrong about that, someone please let me know.



Had my appointment with Dr. Wu (ps) yesterday, 3.5 weeks post diep. She was very pleased with my progress. Said she wasn't at all concerned with the hard areas on my breast, that was swelling from surgery and should go down. The. Ab incision looks great, no scabs or open areas. Only scab is on the belly button. It looks like a newborns. She said just to let it fall off by itself. Only restrictions, don't lift anything heavier than half a gallon of milk and no exercising that would raise heart rate or blood pressure. I go back in three weeks and all restrictions should be lifted then. Have always been able to eat or drink whatever I wanted. Also only needed to have drain output to 30 cc to get them out. They have all been out for a while and no probl ems at all. I am only concerned about radiation which starts in 2 weeks doing something to the noob. Keeping fingers crossed.

Kay_G

KatheW, glad to hear it is going to work out. I had a feeling they were going to waive a majority of the fee. Truth be told the doc will still probably end up getting paid what a participating doc would get paid. After all, that is why they don't participate, they want the opportunity to bill more and make more. At least, I think ins. cos. pay non participating docs the same as participating, it's just that the non participating docs also bill the patients over and above that. If I am wrong about that, someone please let me know.



Had my appointment with Dr. Wu (ps) yesterday, 3.5 weeks post diep. She was very pleased with my progress. Said she wasn't at all concerned with the hard areas on my breast, that was swelling from surgery and should go down. The. Ab incision looks great, no scabs or open areas. Only scab is on the belly button. It looks like a newborns. She said just to let it fall off by itself. Only restrictions, don't lift anything heavier than half a gallon of milk and no exercising that would raise heart rate or blood pressure. I go back in three weeks and all restrictions should be lifted then. Have always been able to eat or drink whatever I wanted. Also only needed to have drain output to 30 cc to get them out. They have all been out for a while and no probl ems at all. I am only concerned about radiation which starts in 2 weeks doing something to the noob. Keeping fingers crossed.

bdavis

Kay... Sounds great...my belly button scab came off over a week ago (i am now 3 weeks post op) and my belly button looks fabulous... My ab scar still has glue on it, so hard to tell, but it is smooth and no dogears... My breasts are still firm, quite firm, but I think/hope its all swelling and just needing time... The only drains i have are left over from my hip flap surgery in july... All diep flap drains are gone... Lost those within a week and a half post op

JustLaura

KatheW - I'm so glad it worked out for you!  It will all be done in a very short while and you will be on the way to recovery!

Snobird

BD Davis- That bra feeling will gradually dissappear. Give it some time. I think it was around 2 months that I noticed it was gone altogether. I'm 10 months out and don't feel like that at all anymore. Give it some time.

beacher4209

Hello again Ladies, Which forum would i find Nola in september? I filled out the patient form on line yesterday (hate those things) and sent it to them via e-mail and they said the form were empty gggrrr so i need to call them today im talking about the"center for restorativebreast surgery" in new Orleans  what does nola stand for? i think i use to know but i have got piles of info.....reconruction brain duh

NotAfraid

KatheW - I'm so glad it worked out.  Good luck to you!  You'll do great.

beacher4209 - I posted in the Stage 2 thread.    

beacher4209

 hi not afraid i got your post in diep satge 2 ,i live in sandiego ,UCLA would be so close for me please tell me about you ps your insurance  battles (sure u had them ) and a bit the whole experience there at ucla u can pm me if you prefer hll you could call me im right down pch let me know thanks

beacher4209

 hi not afraid i got your post in diep satge 2 ,i live in sandiego ,UCLA would be so close for me please tell me about you ps your insurance  battles (sure u had them ) and a bit the whole experience there at ucla u can pm me if you prefer hll you could call me im right down pch let me know thanks

bdavis

beacher... NOLA is New Orleans, LA

bdavis

http://community.breastcancer.org/forum/44/topic/736412?page=411#idx_12308

NOLA in September thread

KatheW

And now my DIEP surgery is off again.

PS called me this am to say something was not normal about my ekg in pre op, so I will be going to a cardiologist for more tests. Gotta call my parents again to tell them to postpone their trip out here...again.

Betsy and Kathy--  I am somewhat more relaxed now that surgery is delayed (maybe forever?). I will still do all those things you suggested Kathy, I need a diversion from this drama. Funny, you say I deserve something special for saving the money: at one point I really was thinking...do I really want this surgery or do I want a new car?  Betsy--I am betting you will be able to pull the drains tomorrow. How the heck do you sleep?

Kay --  Good to hear the doc says you are progressing well. ONly 5 weeks recovery before starting rads?? Can you raise your arm? How is the pain? Rads does increase scarring; I have alloderm+TE in my chest right now.... it is very tight from contraction after rads. You are lucky you avoided a node dissection; I think that will make rads easier for you than it was for me. If you are fair or have sensitive skin, you might want to shop for a camisole top with no seams.

Beacher and others who have had TEs-- I always thought it was the Alloderm that creates the iron bra sensation. Please tell me if I am wrong. This is my understanding:

Alloderm is a matrix of human skin cells into which your own tissue grows (it basically scars down to your chest wall). It creates a nice tight place holder for the TE initially, and, ultimately, for the implant. It also eliminates the need for the surgeon to raise multiple muscles to hold the TE/implant in place. During an exchange op, the TE is removed and the implant is put into the pocket already created by the Alloderm+scar. Unless the surgeon agrees to resect some of the Alloderm+scar tissue, there would be little difference in tightness before/after exchange surgery.

My PS has said that he will remove the alloderm scar when I have DIEP. Looking forward to that. Of course, there is no guarantee that cutting it out won't generate just as much scar tissue, but there is always hope.

Not afraid -- I am still considering UCLA and NOLA. I will have some time to think about this again. How long were your surgeries at UCLA? I think I am going to have a problem with a long surgery.

Jerusha -- 4 1/2 hours for DIEP is impressive; I need to seriously consider NOLA again. I think my PS said 6 hours minimum; 12 hours maximum if all goes well. How long before DIEP did you have BMX? 

Kay_G

KatheW, sorry to hear surgery is postponed again.  I can imagine your frustration.  I hope all goes well with the cardiologist.

It will be 5 weeks since DIEP next week when I have simulation (I think that's what they called it, they will be just lining things up to be ready).  I won't be starting rads until the following week, 6 weeks post DIEP.  PS said to make sure to wait 6 weeks before rads.  I did not avoid a lymph node dissection.  I had a complete Lever II ALND.  BS said she took all the tissue that was there.  Even though she took all the tissue, there were no lymph nodes there, either because of neo-adjuvant chemo or because of the heavy duty steroids I had to take for pneumonitis chemo gave me destroyed them.  My arm is coming along well from where I started.  I could only lift it up shoulder high when I first got the drains out.  Last week I started with an occupational therapist doing exercises, and I can lift it over my head now.  I believe I will be good for the simulation.  I don't really have pain, although I am using advil.  I more have a lot of tightness and numbness (the advil seems to take away the numbness and make it feel more normal).  I have extremely fair and sensitive skin.  I have tons of freckles adn burn really easily.  The RO told me doesn't necessarily mean I will burn with rads.  He said it is a different kind of radiation than what causes sunburn.  I'm not really believing him though.  Thanks for the tip on the camisoles.  I bought a few of those for the DIEP, so I guess I will be getting my use and money's worth out of them. 

My surgery was 5.5 hours.  Had Uni MX, lymph node dissection, DIEP and lift on the other breast.  It took exactly how long she estimated it would. 

I haven't asked, nor has she mentioned anything about stage 2.  I am waiting until after rads since that will effect the noob.  RO told me it might shrink it a little.  Also, said it might change the color of the skin.  Hoping that's all it does (other than kill any rogue cancer cells).  I am getting the feeling that Stage 2 is not taken as seriously as at NOLA and probably some of the other places people travel to here where I am (UPenn in Philly).  Will see what she says in a couple of weeks.

KatheW

Kay -- Sorry to hear of your level 2 dissection, ouch. Not sure how it was a level 2 dissection if there were no nodes found?? I thought level 2 means that 2/3 of the nodes are removed?? Well it doesn't matter now; rads will kill any cancer that was left behind. Node dissection is unnecessary trauma and surgeons should just stop doing it; very angry about it myself.

Are DIEP camos the same as mastectomy camos?? I wasn't able to wear my mastectomy camisoles for rads. Once I was 2 weeks into it, I had to find something smoother and lighter. It helps if it is really stretchy, too; then you don't have to remove it completely for treatment, just slip off the strap and pull down one side. The less you have to pull things on and off the better.

Hmm, maybe the rads burn is different from sunburn, but it sure felt the same to me. My skin turned pink, then red and then, after I was done, brown. Some freckles turned very dark brown, almost black. The skin has healed nicely, though, albeit still peeling a bit here and there. All in all, it was not so bad-- just use the creams and stuff they give you. And take it easy. It will be behind you before you know it!

Kay_G

I am puzzled about that too.  I am going to ask the onc about it.  The BS said she has seen patients who had neoadjuvant chemo where the chemo destroyed the nodes and there were no nodes in the tissue at pathology.  I haven't heard of that or been able to find out anything on google about it, hoping the onc will be able to give me some info on it.  I had "multiple" nodes involved on the first MRI I had, so I guess there was no choice but to take everything out.  

I am questioning what the RO told me too.  I know other RO's say that fair-skinned people have more problems with burns with radiation.  I will see what happens.  Thanks for the tips. 

RetiredLibby

I have very fair skin and do not freckle -- I burn. My skin is also very thin. I had zero problems with rads -- four years ago I had whole breast radiation, including my axilla, and did not burn at all. I had 28 regular treatments and 8 boosts. My breast got tan and half my armpit doesn't grow hair anymore. I did get a peely place under my breast because in between the regular treatments and the boosts we went to Cancun and I got sweaty under there, but that was all. No burn, nothing. Now, four years later after the recurrence that led to my BMX and DIEP, the skin is more fragile. The PS thinks I might lose part of that nipple, and it is smaller than the non-radiated side even though it got the bigger flap. The nurses at the rads onc said that they have seen fair women not burn and dark women blister ... It seems to be individual to the skin and not the coloring.

KatheW

Yes, I have no hair growing in my radiated axilla either-- a positive side effect!

Sherryc

I am fair skinned and did burn and peal and got completely raw. But once it was over I healed pretty quickly.  But PS says lots of damage was done so I am having to wait on my diep until I heal better.  Going to see the PS tomorrow so will see what he has to say.

bdavis

sherry... how is your nerve pain?