Topic: Update - DIEP + 21 months

I am so glad to read this. I had DIEP 10/9 and one side failed. I am going to do a temporary implant and probablly another flap in the future. To hear from someone who is almost 2 years out and happy about the decision makes a big difference. Thank-you!!!!!!!!!!!!

Hello Msdicken,

It is nice to read your progress. Thanks for sharing. I had bilateral DIEP 3 months ago. The scar on my tummy is still painful. Not that much to take pain killer. Tummy still feels hard. I am thinking of Stage II. How long did it take for your tummy to be normal? Where have you done your surgery?

Hugs,

Hope

Shadow, I read your story which is what prompted me to post my update.   Sometimes things go wrong but most often they go right.  I am sorry about the failure and hope you have great success with the next flap.

Hope, I had Stage 2 four months after my initial surgery.   I also had a Stage 3 and a Stage 4 all within 14 months.  My tummy was back to it's new normal after a few touch ups during Stage 3.  The swelling did take a while to come down and it was hard for a while but it eventually healed.  

I used a doctor out of Paoli Hospital in Suburban Philly.  PM me if anyone wants contact info.  

Thank you very much for your post.  I am scheduled for PBM with immediate DIEP on January 5 and I'm very happy to hear you are doing well almost 2 years out and happy with your decision.  Good for you!

NativeMainer,

I have to say that one of the best feelings ever was NOT having a planned surgery in my future!   When I first met with my PS he said the entire process would take a year.  My first surgery was Jan 08 and the last one was March 09.  I could have finished up quicker but you really need down time to relax and heal.  I didn't want to spend the whole summer or the holidays recovering from surgeries. 

A word of warning tho, that very last appointment is a bit of a tearjerker!  

Leah,

There is no worse time than the "what should I do " stage. I has lumpectomy and was planning on radiation and then tamoxifen. My margins came back clean but narrow and I was scheduled for a re-excision and then the rest. After scheduling the surgery , I just felt uneasy as if my gut was telling me to reconsider. Four days before the surgery I called and cancelled and just yesterday met with the plastic surgeon and scheduled to have bi-lateral mx and DIEP next month. I felt like the weight of the world was lifted from my shoulders when I made up my mind once and for all. No one can really tell you what which path to take . It is a very personal one. I was looking for a doctor, a relative , my husband, someone to tell me what to do but everyone understood that only I could decide what was best for me. I went from overwhelmed and stressed back to my old self once I decided.  I know that it is a rough recuperation and not a quick one but for me I feel it will be worth it to put this whole ordeal behind me. Our son is getting married the beginning of January and I WILL be walking down the aisle!

Last year this time, I was packing for a wonderful trip to Israel. This year I am packing to go to the hospital. We never know what lies ahead. Take your time and go with what you feel is right for you. I believe you will know it when you have come to the right decision. Take care.

Gelati, thank you for your encouragement. You're right, the decision making is hard. I don't have to hurry with my decision, since I've had a mast, chemo, and rads already. What I have to decide about is oophorectomy and prophy mast. I already know I'll do the ooph, but if I do the prophy mast I'll do recon. So here I am, afraid to do the surgery and afraid not to do the surgery. Since I finished rads in Aug I can't do it until midwinter so I'm just letting the ideas float in my mind.

I'll be taking a trip to the U.S. soon to visit my family, and don't plan on doing any dr consults until I get back. The trip is important to me, since all last year during treatment I kept telling myself that I'd go after active treatment was over. So, this is both reward and symbol.

Leah

P.S. Last year, you were packing for your wonderful trip TO Israel while I was packing for my trip to the hospital IN Israel. This year you're packing for your trip to the hospital while I'm packing for my trip FROM Israel.OK, so funny stuff happens.

Noni - I was so happy to read your post.   I had unilateral DIEP done Aug. 24th - like you said - it was hard but I am already happy with the results - next week am having phase two - nipple/lift on left side and some repair work done where radiation messed an area up above the new flap (this happened before the reconstruction).   It was interesting to read your comments about the abdomen being numb still.   Mine is soooooo numb and tight - my PS said it could take a year for that to get better.   It's was great to hear everything  you said - thanks so much for writing!!   Next month it will be 2 years since all the cancer "stuff" started.   Chemo/mastectomy/radiation - then I took a break - my daughter got married - enjoyed the rest of the summer and then had the reconstruction.     It will be so good to not have a surgery in my future.   The holidays are going to be wonderful!!!    Take care!!   Stephanie

I'm a DIEP + 11 months and echo Noni's satisfaction.  I had DIEP with my mastectomy and I'm glad I did.  I was in the hospital for 5 days, had drains for about 21 days, but went back to work (desk job) after 3 weeks. 

To answer the previous post, I wasn't allowed to exercise or jog for 6 weeks.  When I started jogging at 6 weeks, I was stiff (the tummy tuck felt tight and my arm/shoulder area was tight as well).   But, by 10 or 12 weeks, I was back to my semi-normal speed.

I, like Noni, am happy with my choice and wouldn't change it.  But, I too have numbness from my navel to the incision, just about my pubic area.  I was hoping I'd get back more feeling, but it is either coming back so slowly I don't notice or it's not coming back.

My entire reconstructed breast is also still numb.  Noni didn't mention this, but I'd like to hear if this is common (I think it is).  My numbness extends throughout my armpit and the under side of my arm.  Feels weird, but I'm getting used to it.

Another thing that bothered me was cording.  I did my post-op stretches according to recommendation and had full range of motion.  At about 4 months post-op, though, I got cording and didn't know what it was, so I went to a doctor and a PT.  With stretches, it went away.  Just 2 weeks ago, though, it has come back (yes, 10 months post-op).  I'm doing the same stretches and hopeful it will go away again.  (I had 20 lymph nodes removed during my mx, so maybe I'm more prone than someone who didn't have lymph nodes removed.)

In 3 weeks, I'm going in to have my other side reduced for symmetry.  If anyone has had regular reduction surgery and can tell me what recovery was like, I would appreciate it.  I'm looking forward to it being over, and hoping to start 2010 with all of this behind me.

Thanks for posting, Noni.  I'm happy to read about people who are farther down the recovery trail than I.

Linda