DIEP 2011

I third the BMX decision.  I had DCIS 7 years prior and a lumpectomy and rads.  Was dx in January with 2 separate areas of DCIS in the other breast.  They found IDC in a 3rd area after DMX.  I just didn't want the slicing and dicing to continue.  Cancer 4 times total is enough for me.  No regrets at ll, but it has been a long year.  But, I DO love saying "I'm Cancer Free".

ReadingMama,

I had a bilateral and my scar is hip-to-hip (actually outside hip to outside hip -- 24" across).  I don't have dogears because he curved it around and did little "Y"s at each end to tuck it nicely.

They tried to do an SNB on my left (recurrent) breast but couldn't find the sentinel node because it had been damaged by rads my first time around.  They didn't do an SNB on my right (prophy) breast because there was no evidence to support it.

Can't answer your third Q because I had DCIS.

Ask more questions!  It will make it so much easier the more you know!

L

Meegan...

- With the DIEP, is the scar hip to hip like the TRAM? MY SCAR IS HIP TO HIP BUT NOT TO MY SIDES... AND NO DOG EARS FOR ME EITHER

- With a mx, do they still do a SNB?I HAD A SNBDURING MY LUMPECTOMY IN DECEMBER,SO NO MORE NODES WERE TAKEN IN JULY.

- with a mx, do you still get targeted therepy depending on your markers, like an AI or Herceptin?NOT SURE WHAT YOU MEAN.

Hi everyone. I thought I'd check in and let you know I finally decided to go with TE's/implants. My CT scan showed they would probably have to take some muscle on one side. Plus, I need to move apartments at the end of the year and want to limit the amount of time off from work. By going with implants (rather than a lat flap), I'm keeping the door open to a DIEP at a later date (well, I guess the one side would be a modified TRAM). This also gives me time to find a surgeon I really feel comfortable with. (The PS I have now is supposedly an up-and-comer, so hopefully by the time I'm ready, he'll have a few more hundred under his belt if I still feel comfortable with him). I appreciate all the comments and advice.

HI ALL...

HOPE ALL IS WELL... I STARTED WITH A PERSONAL TRAINER... I AM NOT GOING TO DO STAGE TWO TO FEB OR MARCH...

YOU ALL ARE IN MY PRAYERS...

sohardbnme,

It's wonderful you're going to work with a personal trainer: I love how exercise and strength training prepared me for my prophy bmx/diep, and being fit sure seemed to speed my recovery. Not to mention helping to manage stress.  But now if I understand you are post diep, so also post mx.  I hope you'll do some reading to learn about guidelines your trainer should be following to help make sure that any strength training you do post-surgery is done safely from the perspective of your risk of getting or worsening lymphedema.

If your trainer is certified he/she should be able to get a copy of the PAL guidelines here: .  http://www.penncancer.org/physical-activity-and-lymphedema/.  There's some controversy about the risk we take doing strength training after breast surgery, and here is a wonderful resource that gives very good perspective on weighing the risks and benefits (scroll to 'exercise' section):   http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm. 

We all have different needs and priorities, and I have made my own decision to return to strength training--but only after my trainer gets specific training in the PAL guidelines.  I know there are personal trainers in my area that give cancer-survivor fitness programs but have essentially no knowledge of the precautions we need to take, so we cannot assume that trainers understand our needs. Before you lift any weights or use resistance bands with your trainer, make sure both of you understand the risks and needed precautions, and do what you can to get the trainer educated.  Best of luck!

Carol

Meegan... When I saw Dr Allen in NYC (same group as Levine) they told me it was $450, but would be covered... I asked numerous times... so I went, paid my $25 co-pay and then a few weeks later received a bill for like $100 since Aetna paid 70%. I wrote back saying I wasn't paying the $100 since they had assured me it would only cost $25.. Haven't heard from them since... the consult was in May... So I would ask them to contact your insurance company and check on coverage.

And I refused to make my consult appt without hearing what I woud pay... so they did not make me pay up front, only the copay.

When I did a search for in-network DIEP doctors in my area, none showed up, so I expanded to the tri-state area, again none... turns out NO ONE in the country is considered in-network for DIEP wit Aetna... luckily NOLA works with the patient and you fill out a "what you can pay" form... I was one of the few that even though I am out of network, they have a contract with a third party and it was processed under a contracted rate... you never know till you ask... I also never filled out the what you can pay form because of the contracted rate.

Reading mama, my understanding is that either you have all the skin removed so that you are "flat" and with a later flap reconstruction they will utilize your tummy skin as well as fat. Usually it is a football shaped piece of skin, which can sometimes even be removed at stage 2 -- tho I don't know how often that can be done. If you want to preserve the skin envelope you will need TE's as it will otherwise scar down and no longer be a "pocket". At least, I think these are the 2 options...maybe others will speak up...

If you have access to TimTams picture forum there are some excellent pix of women who had delayed reconstruction with the skin inserts I mentioned. Look up on that site, Nordy, Laughlines, and Minnesota-- for starters. If you do not have access to that site, send a PM to member Lilah, and ask her to help you get in. Hope this helps:)

I went flat, then had a TE put in and my breast skin was used for the breast with tummy skin for the areola.  Since I just had uni MX and DIEP, I am glad my noob skin matches my other breast. I had also had radiation, so the skin was not very stretchy  My noob is firmer, but I am glad the skin matches.

I had my other breast lifted 2 wks ago and was doing great until Thursday, and I think I have a seroma or fluid in the breast.  It doesn't hurt, but it is uncomfortable and I can feel it jiggling.  I called the drs office Friday afternoon and am doing heat, ice, and massage this weekend.  If there is anyone out there with experience with this, I would love to know what you had to do.

Gardengumby... if they take ANY muscle, isn't it then a TRAM flap?? There are two kinds of TRAM, the one where they shimmy it up under the skin and the other which is just like DIEP but takes muscle... I think you had a TRAM flap.

I understand there to be 3 options for the DIEP or TRAM.  The second one being the muscle-sparing FREE TRAM, which takes a postage-size square of muscle if the perforators/arteries aren't adequate. The abdomen will not be as strong after, but not too bad.  For people who do a lot of abdomenal workouts or activities, this option isn't great, I hear. There is a slight chance of a hernia also, but not too common. I think this is what Betsy is saying that it is considered a TRAM, but a PS will go in to surgery hoping to do a DIEP, but it may turn into a muscle-sparing FREE TRAM. My PS knew I wasn't thrilled with him maybe changing his mind & luckily I was able to have the DIEP. I don't know how often they do the regular TRAM anymore where they are taking half the abdomenal muscles. My PS wanted me to have my "home run" and not get to just "3rd base"

hi there,

trying to prepare for Nov. 8 surg., looking at the posted lists, suggestions...

a question for the vets. i'm having uniMx w/ DIEP, wondering if any of you managed to sleep using a wedge pillow instead of renting a recliner?

also, PS mentioned a last resort of taking a very small "cuff" of muscle if arteries don't work. Is that the Free Tram?

I want this all to be over with so bad...thanks for any help

ps garden gumby I'm w/ you, only want to cut off what's necessary, though i probably will be paranoid and constantly checking my other breast for signs of Ca.

I use the term diep to label my bilateral reconstruction, because it says immediately: microsurgical autologous tissue transfer. But in fact, I had a muscle-sparing free tram flap. And in response to some of the comments about the differences between the two, and what you 'get' if your surgeon takes some muscle, I thought I 'd share my experience here.

My PS and I had a long consultation about the range of  possible outcomes in the OR.  I had the CT scan, and he knew going into it that taking a 'cuff' of muscle was possible. He and I reviewed together a good study that compared objectively-measured trunk torsion and extension as well as the patients' perceived functional fitness, comparing women who had a true diep to those with a MSFTF. The study determined that most women will not be able to perceive the difference between the two outcomes after healing, and the measured differences were not statistically significant. 

Possibly the recovery is longer for the MSFTF, but only in the sense that it's critical to reintroduce ab use gradually: go slow and easy.  At 3+ months out, I can say that my functional fitness is back to pre-surgery: I can move in and out of chairs, beds, cars... with no loss of function, which would not be the case with the traditional tram flap, which removes from the core the full rectus abdominus muscle.

My PS and I agree that I  will wait at least 9 months before re-starting my abdominal fitness work: no crunches!  And I am very patiently respecting weight restrictions, to avoid cantilevering too much weight on the abdominal wall.  I travel a lot for work, and it means packing two light bags instead of one heavy one (so I lift one at a time when they cannot be rolled), but otherwise I don't notice any big life change because of this.

I work with a wonderful personal trainer, and he and I have already mapped out a strategy for when I have green light to work my core.  Based on how I feel now, and my functional fitness today, I can say that I do not expect to notice much, if any, loss of ab strength or function a year from now.

So many women seem to somehow feel 'gypped' if they end up with the MSFTF instead of a diep, but I think that is a mistake.  My PS is extremely experienced in all kinds of microsurgery, including hundreds and hundreds of breast recons. I do not think his choice to give me a MSFTF has anything to do with his skill; instead he used his judgment and determined that this would be the best way to provide perfusion to the flaps--i.e. give them the blood supply needed to survive and thrive.  I have no fat necrosis.  I wonder if there are some dieps out there whose flap troubles might have been avoided had the PS taken the little bit of muscle. 

Before surgery, when my PS and I dicussed the muscle question, I told him that when all was said and done, my outcome had to pass the kayak test.  Paddling a kayak takes more arm and shoulder than it does core strength, but getting in and out, now that can be a trick that requires core strength!  Especially when going in and out from our dock instead of a beach or riverbank. 

PS took that very seriously, and he then told me that the size of the muscle portion --if required at all--would be related to the desired size of reconstructed breast.  If I wanted to be as big as my former self, well..a bit more muscle.  If I could live with a smaller me, he would know to be conservative in the muscle removal.  I voted to say farewell to the D cups in exchange for passing the kayak test--if needed, which it turned out to be.  No kayaking yet  since surgery, but I cannot imagine that I will not be in my yak, and happily so, come spring. 

Whether diep, sgap, tug, or MSFTF, these microsurgeries are truly miracles of modern medicine. When I occasionally have been frustrated with some aspect of the recon process, I just look at my 82 year old mom, who was diagnosed with BC at age 38. She had no recon choices. None. Today we have such an amazing range of choices, with pros and cons to be weighed for each one, including to stay flat if that's the right answer for personal needs and preferences. 

So...I'm always a bit sad when someone is made to feel that somehow her MSFTF is something she settled for, or that it must mean her PS did not have the skill to give her the real deal.  It IS the real deal...only a slightly different pathway to get us to a successful outcome. The LAST thing I wanted was to get my body parts rearranged like this, only to lose a flap or a big chunk of it. I truly do thank my PS for being my advocate in that OR, and I absolutely trust that he made the right decision.

Carol