DIEP 2014

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited April 2014

    All the positive reports is making me feel better.  Teacher, glad you are feeling good about what you see in the mirror.

    Lemon, I have been trying to get my pre-op scheduled, but it's been a battle.  Will try again next week.  Don't know what the hold up is.

    I feel like I have a million things to do all of a sudden, but then I spent the majority of the day on the sofa watching movie's today.  So.....

    Janet, thank you for my new motto.  I like it.  And, thank you for hanging around to give us courage even though you are done with the worst part. Are you scheduled for you stage 2 anytime soon? I know you went to see your PS about it, but refresh my memory on what the outcome was.

    Ashira, you are coming up soon. We are here for you.  Cheering and hollering!!!

  • optimi
    optimi Member Posts: 67
    edited April 2014

    Ashira and Goldie you ladies are going to have it all behind you very soon.A huge step towards gaining back your lives! Can you tell that I am jealous :) I have another 2-2.5mos before surgery and I haven't even decided on a PS yet. I dint understand how the first PS I talked to could be of the opinion that my abdominal fat would only suffice for A cup sizes in the smaller range if that while the second PS talked about full B or even C cups. I have put on about 6lbs but that wouldn't make that much if a difference. I am going to have a third and pissibly even a fourth opinion but this process of finding a PS itself is stressing me out :-/

  • optimi
    optimi Member Posts: 67
    edited April 2014

    Sorry for all the typos!

  • Ashira
    Ashira Member Posts: 161
    edited April 2014

    Optimi, I remember it well, searching for the right PS for me. My suggestion is to ask for local references if possible. A good PS should have plenty of women who are pleased with their results and willing to share their experience with you. Also, don't be shy about delving into the details of insurance. Different practices handle it differently and unless $ is of no concern, you should be clear on the costs associated with treatment, which can vary considerably. 

    After I did my research, I went with my intuition. I'll keep you posted on how that turns out :-)

  • Janet_M
    Janet_M Member Posts: 1,068
    edited April 2014

    Goldie - Yes -  I'm scheduled for Stage 2 on May 27. Surgery is at 2 pm, and I'll have nipples by dinner. I'm also getting a little tweaking done on my dog ear. I'm very excited. 

    Just think, by the time I get my finishing touches, you'll be well into your recovery, and enjoying brand new boobs that are 100% Goldie - solid Gold! 

  • goldie4040
    goldie4040 Member Posts: 2,280
    edited April 2014

    Yeah, Janet.  You need to get on the schedule above. So, now  no more sponge bob after he fixes the dog ears, right?  That is what he said, I believe, and nipples, how awesome. 

    Optimi, you get as many opinions as you need to make you feel secure with your decision.  I didn't do that, and I am paying for it now.  But, I am going to be all fixed up very soon!!!!!

  • JerseyMomOf3
    JerseyMomOf3 Member Posts: 96
    edited April 2014

    Hi again everyone. I signed my consent forms for the bilateral mx and DIEP, and am now waiting to have my surgery scheduled. I have multifocal DCIS in my right breast. I also have extensive atypia, abnormal friends including ADH, LCIS, FEA.  Right now the left breast looks clear on imaging so no sentinel node biopsy planned for the left, but it will be done on the right. I am feeing a little anxious about the node biopsy and chance of lymphedema. Has anyone here had any experience with this from a SNB after MX and DIEP? Thanks so much!! :)

  • optimi
    optimi Member Posts: 67
    edited April 2014

    Ashira, I am doing a lot of research regarding the PSs. It feels like that's all I am doing recently. It takes up so much time. My last PS handed me a couple of phone numbers of former patients who I will call but I am sure those will only rave about her as she would certainly not hand me numbers of patients who weren't happy with her :) But I surely can't wait to hear about your experience!

    I am so sorry to hear that you went through a rough time, Goldie! I hope they'll fix you up well and you'll be happy with the new outcome!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    Jersey Mom....you are in the right place. Others will chime in throughout the day and week. I was a delayed mastectomy and delayed DIEP so my experience is different. You'll find lots of support here. Sorry you had to come looking but glad you.found us!

  • JerseyMomOf3
    JerseyMomOf3 Member Posts: 96
    edited April 2014

    Thanks so much Bailey. Love your tagline. :)

  • Teacher64
    Teacher64 Member Posts: 840
    edited April 2014

    Another step toward the new me...wearing the binder only at night til May 1. It feels a little weird without it, but I think I will adjust just fine.

    JerseyMom, I had SNB and BMX. I did NOT develop lymphedema but did develop cording on right side where nodes were removed. It went down to my elbow. When I was able to start working with my trainer, he led me through gentle stretches and massage so that by the time I had DIEP three months later, I had full ROM and no pain. Since DIEP I've been doing wall crawls and the same gentle stretches I did before to develop movement in my arms. Cording has not returned. 

    Goldie, nothing wrong with watching movies. Do what you need to do to get through and enjoy.

    Ashira, take it easy this week so you will be ready for your nap on the 17th.

    JanetM, love the licorice baby blog!

    According to dr, the belly pain I experienced last week was from doing too much, so I've cut back. I believe that dust is a protective coating for my furniture, except for the piano, and the dust bunnies under the bed can breed for all I care.

    As the belly incision has healed more, I now see what dog ears are, or dog ear because only the right side has  that square look with a little flap, but it is my belly button that is taking the longest to heal. And someday I know I will be able to sleep on my side again. It was impossible with the TEs and since DIEP. Any ideas when that will be possible?

  • k79miller
    k79miller Member Posts: 101
    edited April 2014

    Teacher...I'm glad you're doing good.  I was wondering what everyone meant by the dog ears too.  I've figured it out too.  haha

    Optima...just keep doing your research.  You'll find the right PS for you.

    Ashira...good luck Thursday!

    I'm 3.5 wks out & still have 1 stomach drain in.  I'm ready to lose this thing.  I did a no-no today & drove.  I can only sit around so much.  I still get tired easily too. 

  • Wynne50
    Wynne50 Member Posts: 67
    edited April 2014

    jersey mom.. I had BMX with removal of the sentinel node and 1 other node.  Fortunately no cancer.  I have had no problems since surgery.  In fact when I woke up I immediately raised both arms over my head and the nurses grabbed at them to push them back down.  Fact is, I could do it then and now with no pain or problems.  I've had to work at not raising them.  

    Kim .. I will be 3 weeks out on Thursday and still have one stomach drain.  I can't wait to get rid of it.  I also get tired really quickly and was starting to wonder if it was just me.  Taking a shower and doing my hair exhausts me.

    Hope everyone done is healing quickly and those waiting can stay calm.  The waiting is truly so much worse than the surgery and recovery.

    Blessings to all.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited April 2014

    I don't want to be a doomsday-er, but it's important to note that one has a lifetime risk of lymphedema if even one node is removed. Radiation increases that risk. Having said that, the percentages are in favor of not getting it with just a few nodes removed. There is a lady on an LE thread who had one node removed and she has both trunk and arm LE, however. Don't worry, just be educated and aware. There is a lot of info here on bco.org.

  • lemon68
    lemon68 Member Posts: 684
    edited April 2014

    Janet-Congrats on your date for your finishing touches! I am also enjoying your blog. Bye Bye SpongeBob!

    Teacher- Free from your binder, did you buy Spanx or anything to step down from the binder to?

    Wynne- You sound great, hope you get that last drain out soon.

    I had 2 nodes removed and radiation to breast and my entire underarm due to a couple of micro mets hanging around but not in my nodes..(whew). My R underarm looks  like rolls of baby fat. I have no feeling at all, all the way down to my elbow on the inner arm. If I do too much my wrist and fingers swell like sausages. Most days its not so bad but my right hand, arm is always bigger than the left. The bonus is I no longer have to shave my underarm on that side, rads took care of it for me. My BS for diep is going to fit me for a sleeve after the surgery. Hoping/praying there will be no need to do a SNB on left.

  • JerseyMomOf3
    JerseyMomOf3 Member Posts: 96
    edited April 2014

    Thanks ladies for the insights and sharing your experiences. Wynne, glad you had no issues.Teacher and Lemon, sorry you have had some problems. Lemon I hope your LE improves. Jeannie I appreciate your statement - I did not know that even just one node removed could cause LE.  I will educate myself as to the warning signs and symptoms for both LE and cording, and ask my Dr about this too before the surgery.

    I have another question about incisions. My breast surgeon informed me she could not spare my nipples because they are too big (they really are large! Especially after breast feeding 3 children!) and could not get an adequate blood supply to ensure they survive. I am OK with this because I think I would feel anxious about having any ducts left. For the ladies who had skin sparing but not nipple sparing BMX and DIEP, are your incisions just around the areola? I would like my breasts to be made a little smaller, I think. Is this something to address just with the PS or do the incisions made by the BS affect this? My BS said she could get to the sentinel node through the incision around the areola, so don't think she plans on an additional incision on the side.

    Thanks very much. Nice to meet you all and thank you for your help! It helps to know you are not alone. :)

  • Teacher64
    Teacher64 Member Posts: 840
    edited April 2014

    Jeanie, no kidding about one node. I will watch myself carefully.

    Wynne, it's ok to take a nap after showering and doing your hair. I did til this week. You are way, way ahead of me on ROM but I know it will come  as I work.

    I feel I was very lucky to have the last drain out just after week 2 since the bmx drains were in for 26 days. 

    Lemon, no binder during the day only. I have to wear it at night. No spanx during the day. I don't know if that is the norm or if I'm just lucky.

    JerseyMom, I think different breast surgeons do things differently. My bmx incision was all across my chest. I did not have nipple sparing because cancer too close to area. I've thought about posting images but I'm not ready to do that. Once I heal more from DIEP I will but my healing is still a work in progress.

  • Ridley
    Ridley Member Posts: 634
    edited April 2014

    hi Jersey - I had skin sparing, but not nipple sparing,  My incisions are around my areolas, except that on the side where I had a previous lumpectomy, the new circle of skin also covers the area of that scar (it's a larger circle with a line towards my arm).

    I only discussed size with my PS, and did go a bit smaller.  

    Like your BS explained, my sentinel node biopsy that was done at the time of  DIEP was done through the same incision.

    I had sentinel node biopsies on both sides, and (knock on wood), no problems so far, but I know the risk is there. It's one area where I feel the need to be better educated,

    Welcome to the board!

    Ridley

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited April 2014

    Lemon, have you seen an LE therapist who can massage you and teach you manual lymph drainage massage? Also, in my experience, not all doctors know, care or have accurate information about LE. An LE therapist is your best bet, as is the info on breastcancer.org, The National Lymphedema Network and a group LE women on here started, something like SpeakUp-StepOut.org or something like that. It is probably in the LE info on here. 

    I don't write much on this thread anymore (trying to move on) but lymphedema is an important subject to us. I have learned a lot out of necessity!

  • k79miller
    k79miller Member Posts: 101
    edited April 2014

    wynne...I guess we're in the same boat in several ways.  I did do a no-no today & drove.  Not too far though.  Sitting in the house was driving me crazy.  I went in to the office for a couple of hrs then came home.  I wish I could nap during the day.  Even though I'm tired I can't sleep so I just rest a lot.  My one drain is down to about 35cc's a day.  I'm hoping by the end of the week it will be ready to come out.  Have you seen Dr. Pisano since the surgery?  I saw him before I left to come home & everything was great.   We stopped in Austin to eat lunch with an old high school friend & started running a high fever.  When I got home my daughter took me to the ER & found out I had cellulitis so I got to spend last weekend in the hospital here.  It's a lot better now.  The pain from the drains while I had the infections was about to kill me.  The first night I started running the fever I almost passed out from the pain when we tried to change the bandage over the drains.  Thankfully the pain went way down after we got the infection under control.

  • GeorgieGirlKC
    GeorgieGirlKC Member Posts: 132
    edited April 2014

    Welcome new flappers! :) You will find lots of wisdom, support, and good information here!

    I found this great resource, thought it was worth sharing, a good section with resources on financial stuff. http://media.cancercare.org/publications/original/178-helping_hand.pdf?1380649327

    Katski I am sorry about your kitty and the rough time you have had after surgery. I am just now catching up with the posts and saw a little farther down that you had a better day. I love the vision of you and your peeps driving around in a convertible with the sun on your face!

    Wiynne50 thank you for your feedback and glad things went smoothly! Love to keep in touch!

    MartyJ, thanks for the name on the target pants, and recommendations to make frequent stops/walks on the way home!

    Bluefox, glad things went well! Sonone how are you doing? Too funny, I see Wilbur as a cat too!

    Teacher happy late anniversary! A little celebrating with wine seems most appropriate! And great news about your cardiology report!

    Sorry some of you have been dealing with the dark financial side of all this medical business. It is appalling that someone would charge interest on a medical bill and even more appaling that someone would be rude on the phone regarding medical billingl. I'm with SBelizabeth, getting to a hospital administrator and then escalating as necessary might get someones attention. It is too bad that any of our precious effort should be spent in this way. I had an issue with my insurance refusing to pay for the genetic testing (was approved) and then denied. Very expensive test. The diagnostic company ended up paying for the test in the end but some gray hairs were obtained in sorting it all out.

    Lahela good for you for changing docs! And a little feedback is good for anyone, right??

    Etoile yay for being on the other side and feeling better.

    SBelizabeth your plan sounds great, so excited for you! I don't know about you gals but it sure helps to have a roadmap.

    K79MIller, sorry you had post op issues. Scary how quickly you can spike a fever and end up in the ER. How are you doing now? Thanks for the driving (home) tips. I think we are going to break it up coming home over 2 days. How long were you in the hospital? Was the 17 nights total, including the day or two pre op? I may need to contact the place we are staying to make sure if we need to stay more than a night or two more we can.

    Goldie/Lemon I am still out here. I too am starting to be in "panic" mode. I have had trouble sleeping and feeling nervous about what needs to get done around the house and to get ready for this trip and surgery. I do take comfort knowing that you two will be out there that day doing the same thing. I keep thinking about what I've seen many times posted on this forum. All we gotta do is show up!

    Janet M thanks for the good post op fashion tips and input on keeping it calm! I have been using some guided mediation the last few days and it has helped. I have found a few button up tops that are a little big on me and a nice color. I like cammis too. Going to pick up a few before surgery. Also found some maternity pants, read somewhere those were comfy. I buy everything at the thriftstore so won't feel bad about taking scissors to anything that needs "modifying"! LOL!

    Optime love your positive attitude and thinking! Ashira, thinking about you.

    You gals are awesome! 

  • Janet_M
    Janet_M Member Posts: 1,068
    edited April 2014

    Jersey - I had skin sparing, but not nipple sparing BMX, and have pretty much the same outcome as Ridley. (And we have the same surgeon). My incisions are around the areolas only, but in my case the right 'crop circle' is larger than the left. I was bilateral and the right tumour was substantially larger than the left, and also required radiation. 

    But I just found out that these crop circles will be slightly reduced once I get my nipples. I'm not entirely clear on the procedure - but my abdominal skin now replaces the areola, and my nipples will be formed from that skin - which which make the  circle smaller. 

  • Comet08
    Comet08 Member Posts: 13
    edited April 2014

    jerseymom- I had DIEP on left side only and was told they could not do nipple sparing because the lesion was too close to the nipple. My incision was around the areola only, which amazes me. I was concerned about how much skin would be grafted from my stomach to my breast but it's only the nipple area and eventually I'll get a tattoo. All of the rest of the skin on my breast was preserved. My PS ( in Boston) said that it can vary from person to person and depends on how the mastectomy goes. Best of luck to you with the surgery.

  • Beebop
    Beebop Member Posts: 206
    edited April 2014

    jerseymom- I had all nodes removed on my cancer side.  I had some cording at the beginning and also nerve damage which was aggravated by radiation.  It had been over 2 years and I still have a lot of pain and numbness.  I have not developed Lymphedema though, which is good.  I follow all the rules to keep my risk low.  

    Teacher- my belly button took a long time to heal and now it has practically closed up, it is tiny!  It was about 8 weeks before I could sleep on my side.

  • tlbradyful
    tlbradyful Member Posts: 134
    edited April 2014

    This stage 1 is still doing very well. I am amazed at how well it went. They look so great already and it wasn't bad at all. I went to two grocery stores today in a rain storm. Happy!

  • Beebop
    Beebop Member Posts: 206
    edited April 2014

    Wow!  Tbradyful, you are less than a week out, right?  Glad you are doing so well!

  • lemon68
    lemon68 Member Posts: 684
    edited April 2014

    Jerseymom- Thank you, its minor compared to all we go though. I am doing nipple sparing, fingers crossed I didn't breast feed and I really want to keep them. I have to go a cup size smaller but I am fine with that. As soon as I wake up I am going to be peeking to see if they are there..lol

    Jeannie- Thank you, my oncologist denied the lymphedema. My PS and new BS immediately said that was what it is. I look forward to getting it under control after the surgery. Thank you for posting here, miss seeing your posts. Always giving such great, warm advice. XO

    GeorgieGirl- I keep telling myself to just get though Easter and then get nervous. I have pre-op the day after, my mind is going so fast. Overall I am still feeling so good about it. When I imagine the drive there (only 30 minutes) I feel so nervous, I cannot imagine the traveling so many of you have to do. I am going to take my tablet so I can check on you and Goldie.

    Teacher- I want to post my pics too. I hope I still feel this way once its over. Although I think I mentioned I was horrified by the naked before pics on Friday. I love hearing you are out of the binder during the day, good sign!

    BeeBop- Good to see you. How are you doing? I know you were doing much better, still doing well?

    tbradyful- Wow, less than a week and out shopping and a grocery store? Glad you are feeling well.

  • Ashira
    Ashira Member Posts: 161
    edited April 2014

    Tbrady, great news!!' What a relief it must be to be doing so well so soon. 

  • lahela
    lahela Member Posts: 515
    edited April 2014

    JerseyMom, I had skin sparing BMX with immediate DIEP - the only breast incisions was circles around my (also very large!) areolas. My noobs are not much smaller than before because they actually have almost the same volume inside, just lost all that excess post breast feeding skin. I had my crop circles revised in March to make them a bit smaller because my recon nipples will be grafted from thigh skin - the circles were 5cm across and are now 4cm, so that will be my new areola diameter. My originals were oval - about 6cm across and 8cm long.

  • Teacher64
    Teacher64 Member Posts: 840
    edited April 2014

    tlbradyful, wow! Hope you had someone to pick up the heavy stuff! Grocery shopping has always been a chore because even with full ROM of arms I can't reach the top shelf. It's pathetic having to find a tall person to reach that lime juice or my favorite cereal that is beyond my fingertips as I stretch and stand on tiptoes. Consolation is that I will be able to stretch again soon and have noobs and a flat tum and look good while I get groceries. Life perk.

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