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

Thanks to all of you for the information you have shared.  I am deciding between DIEP and implants for my PBM in March or April.  I really want DIEP because of all the reasons you chose it but am concerned about the anesthesia during 12 or more hours of surgery.  Any advice or cautions?  And what made you choose DIEP over implants?

BRCA-BRAT,

I had bi NSM and DIEP 12/09 and I too was worried about the anesthesia and length of time being under.  I was told that it wasn't the length of time being under but the "take off and the landing".  Same risks if it were an hour or 12 hours.  This made me feel a lot better.  I chose the DIEP as I previously had implants before BC, had radiation on that side and then capsular contracture.  I was told that there was a high chance that if I just replaced the implant the same would happen.  It's a long recovery, but I am happy with my decision.  Good luck with making yours.

Hi Noni,

I had a bilateral mastectomy with immediate DIEP reconstruction at the beginning of November 2009.  I just noticed what you wrote about breast scar pain and copied it below.  I have the same thing and you are the first person who described it in detail.  Can you tell me how long you were really uncomfortable, more about the massaging you did, and how you knew it was helping.  I am happy about my decision for many reasons, but am still struggling with the breast pain.  Since I am almost three months out, I thought I would be more chipper at this point.  Please let me know anything you can about what you remember about the timing of your recovery from pain in your breasts.   Thank you so much.

peaceandhealth 

For the first year I had extreme pain from scar tissue under my breasts.   The pain would wake me up at night and keep me awake for the rest of the night.   My PS told me he could go in and clean up the tissue or I could massage it regularly and see if it made a difference.  I opted for the massage route and have to say it worked.   My husband kneaded the 'knots' and made them go away.

Hi Ladies (Wonderland, Brit2001, Peace, Lovetosail and Noni).  Thank you all for your input.  I am really leaning toward DIEP and you are helping me come to terms with that.  I agree with you Noni, about wanting to own my body again and get on with my life (last year had 2 surgeries and months of chemo for ovarian cancer).  I do not have any reservations about the tummy scar as it will replace the one I currently have which is vertical, from navel to pubic bone.  But, I do understand why lovetosail would be hesitant.  I assume the scar would be below the bikini line though, if that helps.

Wonderland: I have been hesitant to lose the extra 20 pounds I carry because I want the tummy tissue to be plentiful.  Would this be a mistake, given that I will not be in the best possible fitness for surgery?  I want to do what is best for my overall health and recovery.

Peace: I wish for you a pain-free tomorrow.

Wow!  Now I know what the 'knots' are!  Thank you so much.  I thought it was lymphedema but the pain is localized to one small spot on each side at the bottom of my clevage for wont of a better description.  I massage daily and the knots go down.

My PS said after surgery my breasts would go up/down with weight. Laying around in bed eating for 3 months after surgery ... ahem ... I have a few pounds to lose.

BCRA-BRAT, you are correct, the ab scar is below bikini line.  I'll be wearing a bikini this summer, first time in almost 38 years!  I will, however, stand with my back (bottom..lol) against a wall.. rofl

I am so happy with my new 'girls'.  I'm now my PS' before/after in her powerpoint presentation and we have some plans for new photos for her website when I get home again and 'nipple-up'.

Noni, I'm with you, a year of my life is worth it.  I'm coming up on 5 months and am at about 80%.  I'd do it all over again in a heartbeat.

Wonderland, great post on the best possible condition!

Peaceandhealth, at 3 months I was still an 'invalid'!  Be kind to yourself, it's a big surgery and we all recover differently.

Lovetosail, I replied in your other thread.  I didn't tell you how happy I am with the whole abdomen.  I have a gorgeous new navel, fastened down to the fascia so I have that 'line' down the centre and if I work (really really hard) I can get back my sixpack!!  I doubt I'm that dedicated now, but it's just nice to know I can if I'm willing to do the work.  Everyone who has seen it can't believe how good it looks.  When I saw my before/after photos for the first time I burst into tears.  My poor PS thought I didn't like what I saw.  I hugged her and told her "they're tears of joy".  I've hated my body for over three decades.  Tried to hide my jelly belly to no avail, cringed when I looked in the mirror.  I sure had some issues.  Not any more!  After having 3 primary breast cancers (Stage IIb, Stage I & Stage I), it's nice to experience something so positive after all the difficult times.  I'm so blessed.

My best to All, She

Stephanie,

Reference what you said about "some repair work done where radiation messed an area up above the new flap" (Oct 22) ... can you tell me what your PS did about that?  I think I've got the same issue.  The area directly above the flap on the chest wall is brown from the rads and I get seromas here--got them after my mastectomy and also after my DIEP surgery (even though that area wasn't touched during DIEP).

Thanks!

Gayle