DIEP 2011

Not having my DIEP until October or November (finished chemo today, finishing rads in May).  I'm using Drs. Williams and Williams in Colorado - both trained at Johns Hopkins, and both doctors have been fabulous (good statistics also).  Not sure if a lot of people know that there IS an option in Colorado now.  A friend of mine went to NOLA a few years ago because that was the only option for her.

Although I'm quite a ways out, I'm getting a lot of good information from all of you.  Thank you for that.  Good luck to all of you who are in the process of surgery and recovery right now!

Sandy

@SAMayoFL TY Susan...I'm pretty psyched also. I'm having both procedures done at Beth Israel Deaconess Medical Center in Boston, MA. I am told there will be "teams" of doctors/surgeons working on me with 2 surgeons as the main ones - 1 for the PMX and the other for the DIEPS. How are you making out with your search for surgeons?

@slg2130 *CONGRATS* on finishing chemo! You and I had almost the same BC stats except mine was HER2 positive as well which basically meant 1 year of weekly Herceptin infusions in addition to the AC & T. Are the surgeons that you choose a husband/wife team, or father/son, or 2 brothers? Same last name? Maybe they are "keeping it in the family".

@blondie45 I agree that 2 years is a loooong time to wait ...and can't believe it has been 6 for me. I have had A LOT going on within the past 6 years that has caused me to have to put off this surgery. DH and I agree that it's my time for me. I think of this upcoming "date" as my deadline to get everything done so I will have an easier recovery afterward - not that I think any of the immediate post-op days will be easy (but at least all my Spring cleaning will be done so I can recover in a sparkling house).

Hi Ladies!  Looks like I'll be joining this group barring any surprises in the next couple of days.  I just found out I have a local BC recurrence.  My first BC was diagnosed late last June and I had a lumpectomy and Mammosite in late July.  My tumor markers started to go up in January and then I developed a nasty seroma.  The radiologist who drained it decided that it looked suspicious and sent a sample to Cytology where they confirmed there were some cancer cells in the specimen.  Unfortunately, they were not able to do a complete pathology.  But the surgeon is quite sure it's the same IDC so it doesn't really matter. Apparently, I have a rare situation where cancer cells may have infiltrated a hematoma that resulted from the initial Mammotome biopsy.  Doesn't that just suck?

So...time for the girls to go.  I am meeting with a PS on Monday, and will probably be scheduled for BMX with DIEP within the month.  No point in waiting around.  The PS came highly recommended by my PS and a good friend who is a 3-time BC survivor, so I am confident that I will be in good hands. 

I won't have a lot of time to think about it.  It's just hubby and me, the kids are grown and on their own, so no worries there.  He's pretty self-sufficient as I have traveled frequently in the last few years for work and then to visit the grandkids.

I guess it's time for Round 2 of this battle. 

Michelle

Hugs to all,

Michelle

I am almost 4 months out.  I have a fat necrosis on the left breast (I only had left done because during the BMX, I had implants and then the left failed - Oct. 2009) on the top, my skin, not the flap. PS hoped it would absorb into my body, but it did not.  Scheduled for April 27 to remove the fat necrosis and do some adjusting.  Also having the puckers (dog ears) at hips where the scar ends.  PS said he would remove my handlebars also.  I'm not sure if that means lipo?  My tummy is still swollen and I can't fit in much of my pants.  I see some have taken as long as 5.5 months for swelling to go down.  I walk everyday.  Also, when I strain my tummy to pull up in a sitting position, it raises up on the left side.  I know the PS is watching it, but I am getting kind of worried.  PS did take a small cuff of muscle out with the vessels as is his usual way of doing a DIEP which, in everyone's opinion on this blog, does not make it a true DIEP, but a free flap.  Maybe that is why I'm having the bulging in my tummy.  PS said this surgery would be 3-1/2 hours.  This is the 4th surgery on this breast, I should have a zipper.

Hi ladies- After surgery, how long does it take before a boob looks like a boob? LOL im still deciding. My skin after rads healed well, and im just thinking when to get surgery- i just dont like the idea of 6 weeks out........

also how is testing done for cancer after the surgery on the FOOB?

I had surgery 9 days ago and literally woke from surgery with a boob. It literally looks like a boob immediately. Two days after surgery my girlfriends asked to "see" and they were oohing and ahh-ing.

My  BI DIEP is in May YEAH. I really am excited. 1st it was going to be in Oct. because I didn't want to spoil summer, but then I decided it would be more spoiled without tatas because I am at the lake often and i hate how I look in my swimsuit so I moved er up. Can't wait.

Please keep reporting your progress gals, it is great to hear.

Best of luck to each.

Sam MayoFL,  Sorry to say but this is about you and not about your husband. It took me 3 years and a recurrance to stop worrying about what my husband thought and do what I wanted to do. Don't get me wrong my husband has been a trooper through all of this. He didn't care whether I had reconstruction or not but it was me looking in the mirror everyday at my mutilated breast not him and it affected my outlook on life not his. He didn't want to lose me to surgery. I have to say that the BMX/DIEP was the best thing I ever did in all this mess. It's been great for my outlook on life in general and been very good on my relationship with my husband. And our sex life has returned. (I don't blame my husband for that). At 56 I feel more like I'm 36. Go For It!!!

IowaSue-i think that you will be really glad that you did it.  You will be able to wear a swimsuit normally for summer!  I tried on my swimsuits at 2 weeks post surgery and got tears in my eyes.  Big YEAHS to that!

I have to say, that this is the best thing that I could have done for myself.  I suppose the most important aspect for me was the emotional side of this.  This surgery has been the turning point for me and I feel like I can now move on with my life and put the past 1 1/2 yrs behind me. I am a little over 4 weeks out and so pleased with everything! I am so glad I didn't wait and did it when I did.

Hope everyone is doing well.

V

I guess I lied yesterday, my husband says that today I am 10 days out. I am having some abdominal pain at the incision site with most of that coming when I lay on my side, putting pressure on it. I also have some pain at the location where the breast drain was attached - those drain outlets just seem to get sore from the stitching that holds the drain in place. We just keep an eye on things to be sure an infection isn't developing. I was able to sleep flat last night and am getting very close to being able to stand up straight. When they remove the abdominal fat and skin and stitch you back together, everything is really tight and pulling on it before it is ready is extremely painful and you wouldn't want to do it anyway because you feel like you would rip your incision open; it is a process of slowly stretching the tight skin a little bit along with your increase in activity; really hard the first time you get up and you are really bent over to keep the pressure off your incision (my lower back was pretty sore) but with gentle, easy, appropriate activity, it gets better every day. I slept flat last night in my own bed and am close to being up right today. I'm trying very hard not to push myself and the most important part, for me, is to protect my microsurgery, so staying very aware of what your movements are. I had my son draw a face on my right hand to remind me to keep that arm and shoulder within the guidelines. We also set up my environment so nothing was placed on my surgical side so I wouldn't accidentally reach my arm back behind me to grab something. If you having a bilateral DIEP, this would be more complicated . . .but only during the time period stated by your doctor and the time goes by pretty quickly.



I'm wearing a bicycle short type tummy shape wear that was recommended on this thread and when my doc's nurse saw it yesterday, her comment was "I really like that." The compression seems to help; I wonder if I had started wearing it right away, if perhaps my scar would be flatter. It is definitely raised up at this point. That would be a good question to ask your doc, if wearing compression undies right away makes a difference. It definitely helps me feel more comfortable and helps alot when a sneeze or cough happens. The challenge was to be able to go to the bathroom independently, so for the first couple of days I wore a super lightweight pair of jammie bottoms that slid easily; it made it super easy for me to pull them down while keeping the drains out of the way. The other suggesion of going bottomless is a good one, so just a nightie to keep things simple. That's what worked in the hospital. I got my shapewear at Target, exact same kind I had seen elsewhere but for way less money, also Wal-mart carries an almost identical item for even cheaper but their size selection was really limited. I looked for something that would give good, even compression, not bind anywhere, come all the way to my waist (so covering my belly button and swollen area), and be something that I could manage on my own. It took me a few times to work out how to get the shorts up and down with putting stress on my DIEP side. I am going to get another slightly less compressive pair to wear at night. I also use panty liners stuck to the inside of my undergarments to absorb any minor bleeding or oozing coming from the incisions; again really important to keep an eye open for infection. and ALWAYS FOLLOW YOUR DOCTOR'S ORDERS and call any time you aren't sure about something . . .that is what they are there for. We called multiple times during the first few days because we didn't want to take any chances guessing when we weren't sure. You and your team have way too much invested in this process to take any chances. . . just not worth the worry.



My ps also wants me to wear a camisole with a shelf; my favorite is one that I can step into but challenging to find; again, cannot bind any where around your breast; you don't want to impede the blood supple but you do want some support for the reconstructed breast so the weight of the breast doesn't pull the tissue down (darn gravity); they instructed me not to bend over more than the time it takes to tie my shoes. They had physical and occupational therapy teach me how to dress, undress, do stairs, etc. It is good to be able to manage on your own. My husband has been with me constantly since I got home; I was glad to have him available to help me transition. A couple of days ago I did feel fine being on my own; I would have been ready sooner but I was afraid I would start vomiting due to medication side affects; I'm sure I would have been fine, but no sense in worrying or having stress that isn't necessary.



I've set a goal for each day; today's goal is to detox my body, so drinking tons of herbal tea and tons of water and the second goal is to continue to progress towards standing up straight, so I'll take a nice gentle walk around my house in a bit.



Don't be hard on yourself about the TE - the initial diagnosis is so overwhelming and you don't really have any idea what is to come; the first goal is handling the disease process. Do make sure you are super comfortable with your plastic surgeon and that you have asked every question, including questions about the hospital support team; they are being hired by you and need to pass your vetting process first and foremost.

@Breakinbad.  I had a hard spot in my DIEP breast in my original skin area, not the flap.  I have a big flap because I had radiation and PS needed to use a lot of tummy skin.  The hardness seemed to get better and then it got worse, had a red circle mark on it, like a thumb print and raised up and became very hard and pulled and tugged.  PS waited another 5 weeks hoping it would be absorbed into my body.  He calls it a fat necrosis.  I will be having surgery on April 27 to remove the fat, and do some revisions, like Phase II, fix the dogears at the hips of my stitching and he'll do a little reducing of my own fatty handle bars.  We are trying to match an implanted breast which I had done originally, the left side had failed, then I had radiation and had to wait till the skin was fairly healed.  Hope the hard spots go away, but if not, don't worry, your PS will take care of it.

If I feel around I can find some areas that are firm and under my breast there are definitely some hard areas, but I think those were there before the DIEP. I am just not going to worry about any of until I talk to my doctor. He said my breast is larger initially in order to have room to make adjustments at stage 2.



I definitely feel better with my compression boy shorts on.



It is interesting all the variations on the protocols - to me that just means that there isn't a clear right or wrong, just differences in the PS's experience and group protocols.



I had back spasms earlier in the week, but they resolved quickly with rest.



Anything that doesn't seem right, be sure to call and check with your doctor.



Massaging the firm spots - was that your doc's recommendation?



It is cool that there are several of us about in the same place and we get to compare notes! No one else in my life really gets all of this . . .I don't think you really can until you've been through it.



Isn't it a fabulous thing to have all your drains out!!

Treesprite: what are the arm/movement limitations you were given? I honestly can't remember being given any! You mentioned dressing and undressing, climbing stairs etc. Also what part of the country are you in? I had my surgery in NYC and live in Connecticut.

I had my DIEP at the University of Washington Medical Center in Seattle. I live in Everett, which is 30-40 minutes north of Seattle, depending on the traffic.



I can use my non-surgical arm normally; for my surgical arm - no reaching above my shoulder, so reaching back behind, no pulling or pushing, and no lifting anything over 5 lbs. I think the main thing is not to overextend and pull on the microsurgery. My PS said he had one flap failure where the woman reached back behind to grab something and tore the microsurgery; perhaps that is the reason for the restrictions.



I do notice a hard spot on the underneath part of my breast. My PS said he would go larger in order to have lots to work with so my guess is that it can removed if necessary in Stage 2. I'm doing my best not to worry but it is such a huge investment I just want it to go perfectly! I see my PS on Monday so will wait and see what he says.



I had an odd experience this morning; after my shower, I saw myself full length in the mirror for the first time and I almost passed out. I knew what to expect and the result was better than I expected but something about the total effect was overwhelming and sort of frankenstein-ish. I know it will improve daily but today it was kind of scary seeing such a different reflection in the mirror.