Diep 2012

Good Morning,  I am new to this and would like some help please.  I was diagnosed in May of 2010 that I carry both the brca 1 and 2 gene. I have since gone and had laproscopic surgery to have my ovaries and tubes removed.  I have been struggling but finally succeeding on loosing weight so that I can go and have a double masectomy and diep flap. I would love to hear if any one has gone through it and how they dealt with it.  I am also looking for help on helping my 8 year old daughter cope with me going into the hospital.  She has been fine on the most part but now that it is getting more real and close to the time for me to going in she has been more clinggy.  She cries when I leave her at school and checks on me several times in the night.  Last night she slept with me most of the night.  Any suggestions on how I can make it easier on her?  Thank you for you time and help. 

littlejj - when I was diagnosed, my DS was 8 years old. At first we didn't tell him, but then decided that he would hear it from somewhere, it might as well be from us. So we talked to him about it. I think what helped the most was that we were always upbeat and positive with him. I was going to be fine.  It sounds like your surgery is before they've found anything so this is a preventative measure and it's to help you so that you can be there for her for longer. Major surgical complications are pretty rare so it's very likely that you'll be just fine. We were very open and talked about it when he wanted to do so, but once we told him what was going on, we allowed him to start any subsequent discussions. I think he also got some extra snuggle time.

Thank you CookieMonster.  I have been very open and honest with her and told her it is so I coud be around longer. Yes touch wood that I am getting it done before I get cancer.  Some people think I am going to extreme when I don't have cancer.  I find it will give me a peace of mind to not have to worry.. MRI'S give me migrains.  I am giving the cuddle time as well and more so when she needs extra ones.  Any idea's how I can make the next month or so special for her ??  I am talking to my friends about doing a magical christmas with friends and family..Thanks again for your help.

Littlejj... If I were in your situation, I would do the same thing. And I know of women who have had a prohpy MX and DIEP and have no regrets. One woman I met had it done and her sidter wanted to wait... unfortunately she waited too long and it got her. She passed away shortly thereafter. So being proactive is not over treatment. You need to do what you feel is right. Go with your gut.

My kids were older, and my MX was voluntary (I could have just had radiation after my lumpectomy), but I also went thru chemo... and in comparison, the MX was not difficult for me. I knew I wanted to do whatever I had to do to not get cancer again... and used that philosophy when talking with my kids. They seemed fine with it, albeit nervous about the surgery, but fine otherwise.

Because I had the luxury of time and it was a choice, I did a lot of HW and chose to travel to New Orleans (from NJ) because I wanted the best, and felt they were the best. I knew I would regret cutting corners up front if things didn't turn out well, so I am pleased with my decision.

littleJJ  I am sorry but  I don't understand your description of the DIEP procedure. I had it done and believe me, it was nothing like you are describing!

Why don't you Google it or go on YouTube   and find out exactly what the procedure entails. I started to explain it but I felt that it would be better if you actually read and saw it with your eyes.

Unless in England the name DIEP is for a different procedure than here in the USA.

Mena

Definitely NOT!  It is such a great feeling knowing that in a way it is still me!

After all it's my skin and more importantly its MY tissue, nothing foreign in my body!

Now that they have become very soft and I close my eyes, I feel  that they still  the ones I used to have, that nothing has changed.

I realize that maybe based on the body, some women do not qualify for  the DIEP, but if it's possible, then I recommended 100%

Mena

littlejj - I'm amazed how naturally like "me" my breasts feel - just firmer than before :-)



Seems to me that in your family situation your daughter would benefit from growing up with the impression that this is just a part of what you do in your family. If the bc gene is in your family it makes sense for women and men to be aware that this is a risk and they naturally need to be checked and may need to choose surgery at some point.



I watched an episode of Modern Family last night where the gay couple were using the word adopted around their daughter and doing lots of things that just included the concept of adoption naturally into their day to day living. Maybe your family life needs to normalise prophalactic mastectomies etc?



Jenn

Littlejj, I know concern for our children is often the hardest part of this. Speaking from both my personal and professional experience, here are my thoughts...In the absence of information, kids often imagine scenarios much worse than reality. They pick up a lot when we think they aren't even paying attention. It's important to be open in an age appropriate way and especially let her know she talk to you about it and can ask anything on her mind. She will take her cues from how you approach this. It helps to keep routines, but remember that you know her best. You are setting a great example of how to be an educated, proactive, and loving mom. And you'll be back on your feet in no time! Good luck!!!

Littlejj... prophy mx (prophyllactic mastectomy)... preventative.

Hello all.  Thanks so much for all the information.  The only concern about DIEP for me is reading that you can't stand fully erect for a few weeks.  I have lower back issues and am wondering if anyone has had this procedure with a back issues.  I go to the chiropractor every three weeks and have to keep stretching or I have the tendency to "spasm" (lower back).  Thanks for any feedback!  I'm just worried that this procedure would compound my problem.  Thank you for any input.

Purl... I remember the second night getting up to go to the bathroom and walking totally hunched over. (like an "L" shape looking at the floor... The back pain was the only real pain I had but it improved a lot after 4-5 days. At that point I could stop taking Flexerall... Those seeing me walk, thought I looked like I wasn't hunched... and it got a lot better at day 5 or so. So even though you can't stretch and arch your back for a while, you won't be hunched for more than a few days.

Purl51. I have back problems so I know what back pain is all about!

All I can share and that is what happened to me, is that on the day after the surgery when they made me get up I stood up as straight as an arrow ! No hunching over or anything close, maybe a little pulling but not more than that! I know we are all different , so please don't let what happened to somebody else influence you agains this procedure!



Mena

My apologies cookie. The archaic reference is that I am nipple sharing left with right. Clarity isn't my forte after working 12 hours anywho.......my Ps did a very nice job with symmetry & nipple recon is all I "need" to finish. I am fortunate that my mx & recon really has been a one surgery deal. My abdominal incision does not require any revisions either. One small annoyance I have is a small area on my Abd incision that appeared to be expelling a suture. Ps looked for one but saw no suture. The area cleared up but is now reappearing with a little fluid. Hasn't broken open yet. Just annoying. Almost done! Wishing everyone a very wonderful Sat. Healing thoughts to those still recovering & welcome to those just now beginning their journey.

Gold.......love it. So glad you r happy with your recon. I am totally cool without a nipple on my breast. My frustration is having such a perky extension on the unaffected breast. So I made the decision to share that one. Never thought that would be the way to go but I am looking forward to reducing that over projection and both nipples will look alike. My areola is quite small therefore I'll see @ the tattoo @ the new nipple. I may not do it. I found a recent article by a Ps on revisiting the concept of nipple sharing. I had a few people question my decision on nip sharing..........but it isn't their decision to make

in the meantime the little spot on my Abd broke open once again. Bloody not pus. I am scheduled for a gyne procedure in early Dec. & just don't want to have it cancelled because of this open area. Oh well. What will b will b.

Going to the Steeler vs. Ravens game tonight! First.......a walk on this gorgeous Sunday. Wishing everyone a wonderful day

Thank you all for your input and very good advice.. I will take it all on board to help myself and my family.  I meet with my plastic surgeon on Wed. to see if I have lost enough to go in for my surgery. I live  not far from Kingston. 

I feel much better about sticking to the decission on going for the diep flap. I want to be as natural as possible and not have something foreign in my body. One thing that does weigh a bit on my mind about the surgery is that I am type 2 dibetic. I have controlled it by metformin and have reduced it down to half a pill a day.. With the weight loss I hope to get rid of the pills.

I wish you luck Marcie47 and hope it all goes well.  I am trying to think of all the right questions to ask also.. as I have not gone in yet. Hopefully in Jan. depending on how things go on Wed.

I love the idea on the day out.. I have talked with k about doing different things for the holiday's and getting her imput as well.  So it will be special for her as well as for me.

Thanks again to you all..