Reconstruction

[snolan]

Just joined this group. I was dx 6/8/10 with DCIS, elected to have bilat mast with reconstruction. When I got the path reports back after surgery they found the HER2+ stage 1 and the DCIS was up agaisnt my skin and to my chest wall. What was supposed to be a quick in and out, as far as C treatment goes, has now turned into a longer journey. My PS advised me to take out the expander on the L since I now had to have radiation but my radiologist recommended keeping it in. But when the drains came out the L side got infected. The PS worked with me as best we could to save it with multi doses of antibiotics and draining the fluid but to no avail we had to take it out. I now have to wait 6-12 month (PS recommends 12 mon) for reconstruction. I have elected the lattissimus flap since I am a very active person I do not want to have my abdominal muscle removed. I am through my chemo and radaition. I will finish my herceptin in Aug. I know I could go to Houston to have just the skin flap done but with young kids and the trouble I have had I just want to stay in town. I have had only good advice from all my Dr. My PS has been very patient with me and has tried to follow what ever I have have asked (within reason of course) to try to keep me away from the more invasive surgeries. I still have the expander on the R which will be finished when we do the L.

[Catherine]

Great replies and insight. Just a little note about me. I chose not to have reconstruction, because at my initial DX at age 58 and the year of2006, my oncologist said that radiated skin did not do so well with reconstruction. I guess I never gave it much consideration after that. Yes, I miss my boobs, but I am still very happy with my decision. I also, do not like surgery etc.

All the best in your decision. There is a great thread here someplace about people's feelings pro and con...a few years after their decision.

[Margerie]

There are muscle-sparing procedures that use abdominal or upper thigh tissue (DIEP, SIEA and TUG) Lat flap is not muscle sparing. I had bilateral DIEP a year after diagnosis. I had to travel 4 hours and stay in the hospital for 5 days. My three kids were very young at the time. It took 2 good weeks before I was able to drive, etc. But I wake up every day thankful I took that route. It was a small price to pay for my current quality of life.

I know there is not a one-size-fits-all reconstruction choice, and some women do not want reconstruction at all, but I really encourage women to explore ALL the options that are available. This website is excellent and it includes patient testimonials.

breastreconstruction.org

[Margaret Eleanor]

I went to UCLA two weeks ago to meet a fourth plastic surgeon. I like him alot. He has more experience than any of the PS I've met so far and doesn't make a decision against DIEP before actually looking at the veins and arteries. I meet with a breast surgeon next week. Please keep your fingers crossed that the three of us (me, PS and BS) can get together on July 26th. The date is important because it will allow me to be recovered enough to come home for my daughter's first day of 7th grade...I don't want to miss anything!

[Elizabethtx]

dberg: I am in San Antonio too! I did call PRMA and they book a few weeks out. It looks as though I will not be able to have the surgery this summer. Maybe that is for the best as I have too many uncertainties rolling around in my brain. I think I will take the advice of Mary Jo and give it time. I don't need to be in a rush and need to feel at peace with my decision. Thank you for all your words of advice!
Elizabeth

[BonnieR]

Wondering if we have a "DEconstruction" thread somewhere? I have a friend who would like to hear from others. Thanks!

[vlcarr]

Just wanted to share that I'm 6 weeks out from DIEP on my right breast. My surgeon wanted me to wait a year from radiation before seeking recon. I must say that at the time I really thought I would not even be interested, but changed my mind during the year waiting period.

My remaining breast is not huge but is large enough that the fake one I had to wear really bothered me. It was hot and heavy in order to match my other breast. I also had a caved in area in my chest so it really impacted what I could wear and I decided I wanted it fixed.

I am extremely happy I decided to do DIEP. I was in the hospital for 6 days, around 3 in ICU. The first 24 hours they came in every hour on the hour and listened for a "pulse" in the transplanted tissue. I was so happy it lived. The recovery wasn't a cake walk but doable. In addition, the bread basket all the women in my family have is gone! My surgeon did a wonderful job. I will have another outpatient surgery in 3 months to lift the left breast and make them match a little better. My surgeon said they would be sisters, not twins, but the outcome so far is much better than what I expected.

I was also concerned because I have lymphedema--it didn't make it any worse. Too bad that can't fix that with surgery. I haven't posted in a while but wanted to share this since I'm only 6 weeks post surgery. Please feel free to contact me if you have any questions. Wishing you the best in making your decision.

[fauxgypsy]

I am considering DIEP because it doesn't involve muscle. The length of the surgery and the long recovery are an issue for me. I am just not sure if I am willing at this stage to give up six weeks of my life (in the summer)and undergo the pain of the surgery for this. I had so many problems after my mastectomy that this scares me. On the other hand I am so tired of a hot prosthesis and would like to be able to wear whatever I want. I has a Diep scheduled but that is another thread,

Who are the surgeons in NOLA? I have been lokking and I cam across a group there that sounded good.

[Jaimieh]

The NOLA group that you most often hear about when it comes to Diep or free flap is The breast Restoration Center with Dr. Sullivan, Dr. Dellacrose and Dr. Trahan. I went there for my reconstruction (hip flap) and had a fabulous surgical experience. Here in MD where I live I was told 2 seperate surgeries just for Stage 1, 6 weeks apart and that they might be able to get me to a small B. Dr Sullivan just asked what size I wanted to be and that is what he was able to achieve . I love my new girls, my scars are there but flat and very symetrical. I know it sounds silly but I worried about things like that.

If you have any questions I would fill out a consult form (it cost nothing) and NOLA would be happy to talk to you. They have Katie who takes care of all of the traveling and it really is a LOT easier than it sounds.

Oh besides cosmetically results, I was a double that was done in under 5 hours.

[fauxgypsy]

Thank you. I had so much pain from the mastectomy that the idea of more surgery scares me. It helps to hear others stories. I will fill out a consult form and learn more.

[Jaimieh]

I had such minimal pain and really the only pain that I had was from the JP drains. I was shocked and expected to be in a lot of pain but I wasn't. I had more tightness and low blood pressure than anything.

Oh one other thing that I love about St. Charles is that they listened to me as the patient. I told them what medications had worked in the past and they used them. If they wanted me to do something different they would ask and I got to feel like I was in control which I didn't have at my local hospitals.

[fauxgypsy]

Other women have told me that they experienced little pain. I hurt so bad I could not move. The surgery was so much worse than the chemo. After surgery I developed something called cording. It took months for it to go away. Then lymphedema. A wonderful lymphedema therapist helped me get past that.

[Jaimieh]

Oh the mastectomy hurt like crazy but I was considered a delay reconstruction because I lost my implants 4 months before my flap surgery. The flap while it wasn't a picnic the end results are worth those silly JP drains.

[fauxgypsy]

I am going to look into it further. NOLA is about 6 hours from my house.

[Tracie]

Does anyone have any experience with a latissmus flap? I'm posted for that later this month. I had expanders and implants only and failed after two infections on the radiated side. Now I have only one implant. I hate being lopsided. I was ok being flat, but would love to have 2 boobs and not have to wear a bra!

[chemteach]

Lots of options and lots of information to digest it seems. I had my breasts removed and tissue expanders placed during the surgery. I just couldn't believe that this was all happening to me so quickly, and I wanted to be "normal" again as soon as possible. I healed well and had my first expansion on each side of 75cc. The chemo regimen of taxotere, carboplatin, and Herceptin followed, and my PS would not expand during while I was on the TC. That is behind me and I am on Herceptin only until September. My expansion is complete, and I have implant exchange surgery scheduled for early March. The expanders are stiff and awkward, but they've done their job quite well. I didn't want to be hospitalized and recover and have extra scars and so on. I think this was the right decision for me, and I have no regrets. Yet. I won't.

[KsGal]

Wow..I surpriesed by some of these stories. I had a double mastectomy in November with immediate reconstruction with expanders. Those horrible JP drains were the worst thing about it. Gosh those things hurt. When they removed them in the office I about jumped off the table. I didn't have any problem with infection, although I did have to have a revision of my scar because the skin around it died. The expanders are hard and awkward and look strange...but I don't have to wear a bra and look somewhat normal in clothes. After my first fill I found out I was stage IV, and went through a time where I just didn't see the point in going on with the fills and reconstruction (was having a pity party). I think now I will finish with the reconstruction, but I don't think I want to take it on until my rounds of TCH are finished. My doctors were borderline on me having radiation (I had 3 positive nodes, and apparently they feel four positive nodes indicates radiation). My PS said radiation would ruin the reconstruction. Of course now Im stage IV, I would think I will have radiation at some point. There was a woman in my PS office when I was there who had undergone a reconstruction three years previous, and she was having her implants removed and regretted ever getting them.

[fauxgypsy]

I just realized that I am very close to my 5 year cancerversary. I have made an appointment to have my surgery at PRMA in San Antonio in May for DIEP. I met with Dr. Pisano in December and all went well. I was torn between PRMA and the practice in NOLO but even though it is farther for me to go, I have to say that the billing practice in San Antonio brought it more into my budget (they don't balance bill). From everything that I have been able to find out they are both excellent.

I have been considering having a prophylactic mastectomy and a double reconstruction. I have not been tested for the BRCA gene. My oncologist seems to think that it is not necessary. I am a little worried because I only have a medical history for my mother's family. I still haven’t made up my mind on this.

When I was first diagnosed the surgeon and the first oncologist pretty much told me that I was going to die, so I wasn't real worried about reconstruction at that point. Since then I have given it a lot of thought. If I had had a double mastectomy I am not sure that it would bother me as much. What I have noticed though, is that I am always aware of the prosthesis. It is hot and uncomfortable in our Mississippi summers and I don't spend as much time gardening, swimming or any other activity as I used to. I have always been fairly active and I really don't want muscles moved. When I first heard of the DIEP surgery I was interested. I had hoped to have it last summer but it didn’t work out and considering the difference in experience between the surgeon I will have and the surgeon I would have had, it was for the best.

The mastectomy was the hardest part of my cancer experience and I really dread more surgery so I just keep telling myself that I will be glad once I get through it. Y’all be thinking of me.

[StephN]

Dear Leslie -
May is just around the corner!

So glad you have come to this much of your decision. Choosing the what, how and where, as well as WHO are the biggest steps.

You will have good vibes and prayers coming your way when you need them. Just keep us posted here.

Swimming and gardening - look out, here she comes!

[Pray]

I hope all goes well Leslie!