Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

DIEP Flap Reconstruction 2017

13468944

Comments

  • Kali44
    Kali44 Member Posts: 30
    edited April 2017

    Hello everyone, Falconer thank you. What I was wondering though is whether the Pet Scan is very different than the bone density. I had a bone density and I agree so very easy. Just wondering if I need something to calm my nerves for the Pet. cdv good luck with healing and chemo. Sounds like a lot but I wish you all the very best and know you will get through it. cwayman thinking of you and hope you have quick solutions to put your mind at ease tomorrow. Please let us know how everything goes.

    Hammie such a great idea however, like Falconer I quickly got rid of all maternity stuff after my third as well. Love my kids but no thank you lol

    Hello to everyone else ☺

    Well ladies counting the days for this darn test 😓 I hate the waiting game. First you wait for an app to get there and then once you get the test done the waiting continues for the results, which you only really want to know if it's good news 😊 Argh! I wonder how long it takes to get the results.

    Then earlier today, I was told by gyno's office, that I now need to go to a Urologist as well because they found some blood in my urine. Just when I thought I would get a break and just figure out surgery and recovery. The fun never ends 😞 but I am trying to breathe...yes remember to breathe ...slowly... everything will be ok.... whew.

    A good night to all. Tomorrow will be an even better than today....which wasn't that bad 🙄

  • Hammie28
    Hammie28 Member Posts: 29
    edited April 2017

    Kali,

    The PET Scan is different from a bone density. The worst part for me was that you have to fast before the scan so I was hangry! When you arrive you'll get an injection and then you'll sit and wait for a while (about an hour I think). The scan itself is similar to a CAT scan; you are on a table that moves through a doughnut shaped scanner. After all of that you can eat! I would pack snacks or plan to eat somewhere very nearby. It may be nice to have someone go with you, since you'll have to sit and wait for a while after the injection. Or take an iPad to stream a show... something like that. I was too anxious to read. I'm sure that you can find better descriptions of the PET process in other sections of these boards. I'll be praying for good results for you!

  • jbdayton
    jbdayton Member Posts: 163
    edited April 2017

    DawnLee and Beach4 I hope your surgeries went great today. I said a special prayer for each of you this morning.

  • jbdayton
    jbdayton Member Posts: 163
    edited April 2017

    RT and Trish I hope everything went great with your surgeries and you are starting the healing process. still sending prayers your way.

  • Angelsareeverywhere
    Angelsareeverywhere Member Posts: 1
    edited April 2017

    I was 55 when I had diep on right side, in August. 2015, I am a D cup. I didn't think the recovery was bad at all. I was off work 6 weeks. I have read some posts that the pain was excruciating but I never felt that. I never took a pain pill after I was off the pain pump after 1 and a half days. I look and feel as close to natural as I could get. I had my surgery at University of Michigan, I see many women doing multiple surgeries with implants and not being comfortable. This was the only option for me. Please take a moment,breathe,and do some research from reputable institutions before deciding on reconstruction. I felt very rushed/bullied into hurrying to make a decision...I made sure it was what I wanted...not what everyone else wanted. Doctors will only offer you the options within their skill set. YOU must be your own advocate! NOLA is a great resource of information. U of Michigan, U of Colorado. ..




  • cdv4251992
    cdv4251992 Member Posts: 110
    edited April 2017

    Back from PS follow up. He says here is still infection but it is getting better. Didn't think I needed more antibiotics but said to continue with the silvadene and see him again in 2 weeks. Of course he said to call immediately if anything changes. Chemo pushed out for at least 2 weeks.

    But the good news is he said I can drive again and that I can wear a zip front sports bra, just not too much compression. That will really help me feel more comfortable to go back to work week after next. Annoying news is no caffeine until June and he'll talk about when I can exercise at a later date. I miss running so much. But I can start walking, at a leisurely pace.

  • Falconer
    Falconer Member Posts: 801
    edited April 2017

    cdv- so glad to hear the positive news and that you have some freedom returning to you. Sorry to hear you need more time for the infection to clear but better safe that way. Best to you as you continue to heal

  • jbdayton
    jbdayton Member Posts: 163
    edited April 2017

    Welcome Tpralph to the group. She is scheduled for her DIEP in May.

    Next up is Mtsalhuana for her DIEP on Monday, April 10 and pnwgram on Tuesday, April 11. We will keep both of you in our prayers for successful surgeries. Just show up and turn everything over to your team.

    To those healing, I hope everything is going smoothly. Let us know how you are progressing.

    cdv my prayers are with you for healing. I know first hand how trying that is even though I was not waiting to start chemo. I know waiting is the hardest part. Don't hesitate to ask for a wound specialist if you don't appear to be healing.

    I hope everyone has a nice weekend.


  • Tpralph
    Tpralph Member Posts: 281
    edited April 2017

    WGraf:

    where was  your breast cancer located? what side of the breast was it medially and if so superior or inferior to nipple?  I have one at 4 oclock and have read some articles that they tend to empty into the intermammary glands about 50% of the time, so a bit worried about "them" missing this with sentinenal node biopsy


    Also to everyone, thank you for the welcome. I have IDC right breast 10 oclock mri shows 2.5 cm, u/s shows 1.5 (on two occasions one being just yesterday so hoping that the tumour is closer to the u/s) I just had another biopsy of a smaller one medially at 4 oclock 0 .8cm found on mammography as microcalcifications. Initally had a mammo last February which did not pick anything up. I found a lump last july after having bilateral mastoplexy and augumentation (was 50 at the time and wanted my pre breastfeeding breasts back- was supposed to be a present to myself) , thought it was scar tissue or my fibrous cysts so left it until it seem to grow in the late fall. Had a few trips planned so didn't come to see my nurse practitioner until feb. Mammo again March 6 and voila Cancer!

    Now have decided I want diep (bilateral) as do not want any further surgeries (if I can help it) in the future with implants. I have loved my implants over the year but feel that a diep is / will be better in the end- low/no maintenance. Have to go for a ct april 25 to see if I have enough blood vessels. BMI is 27 and have lots of belly fat. They figure my cup size  will go down a bit but should still be better than the skin and nipples I had a year ago

    Oh yes, I am a nurse practitioner myself and like everyone else was SHOCKED that this could happen to me! I am the one that sits on the other side of the desk giving the diagnosis and reassurance to patients - not supposed to happen to me!  Hate being the patient and being patient haha.  I wish my surgery was sooner, but the BS has assured me that we have time........

    Thank you JB for initiating this thread, has given me more information than the health care system

    T

  • pnwgram
    pnwgram Member Posts: 5
    edited April 2017

    Thank you, jbdayton. I'm getting really nervous, can't figure out what I should be doing to get ready, other than cleaning & laundry. We got a used lift/recliner chair last weekend, but my husband doesn't want to put it in the house yet. I'm assuming he'll bring it in while I'm in the hospital. My biggest worry right now is my sweet kitty, who loves to snuggle with me, frequently crawling up to nuzzle my neck. How do I discourage him temporarily without making him never want to snuggle with me again? Anytime I sit down, he's up in my lap, which I usually love. Did anyone else have this problem?


  • RTChris
    RTChris Member Posts: 17
    edited April 2017

    well I am now 5 days out and finally feeling a little better. I had a bad reaction to the pain meds and lost 2 full days. Since then I haven't taken any painkillers. It's tolerable.

    I looked down on day three and all I could see were two perfect perky boobs ( very bruised but that will go away) and I knew I made the right choice.

  • Kali44
    Kali44 Member Posts: 30
    edited April 2017

    Hi Hammie,

    Thank you for all the information you have shared. My husband had to take care of our kids and I forgot take my phone along. It was fine mainly because I hadn't slept well the night before so I noded off a little and the time didn't seem too bad.

    Dawn Lee and Beach4 hope you are both recovering well. I keep reading the list at the top of the topic and I was wondering, for those of you who are recovering or recovered, what were things you really felt you need/needed after surgery.

    Angelsareverywhere thx for sharing about your recovery ease...wishing that for all of us.

    cdv glad to hear infection is clearing up and Wow? You can drive already!!!???? I didn't know that it can happen so quickly. Yeah! Strange enough I was thinking I should enjoy driving now because it would not be able to for a super long time after surgery. I will live in the hope that I will be able to do so as well. Thx for keeping hope alive 🙄

    Sending thoughts your way Mtsalhuana and pnwgram for a quick and smooth recovery.

    RTChris glad to hear things are improving but sorry to hear about a bad reaction to pain meds. YAY!!!! It is always reassuring for those of us who are waiting to hear about the happiness felt by those who have gone through surgery.

    Soooo the days are going by really fast...and I am excited and anxious and nervous and just want things to come quickly lol like I am sure everyone else. I have pre-surgical testing tomorrow.... can anyone explain what usually happens.... OK ladies I am slow typing and now my back is hurting lol please share and thank you in advance 🙄

  • Tpralph
    Tpralph Member Posts: 281
    edited April 2017

    Well wishes from across the continent to you APRIL ...pnwgram UWMC Seattle Dr. Colohan and on a pink moon as well!

  • Falconer
    Falconer Member Posts: 801
    edited April 2017
    Hope recovery is going well for all. JBDayton- how are you doing now that's it has been quite a while?
  • botzey
    botzey Member Posts: 6
    edited April 2017

    CHRis, I am glad you are doing well. Sorry to hear the meds are giving you problems. They made me itch like crazy. I came off them too when I got home.

  • jbdayton
    jbdayton Member Posts: 163
    edited April 2017

    Botzey welcome to the group, March 3rd would make you almost 6 weeks out now. I hope your recovery is going smoothly.

    I have been out of town for a few days.

    Falconer I am feeling good. I am very pleased with my breast revisions. I can now wear a bra that fits, a c-cup now without any extra padding needed. I don't have any cleavage though. He couldn't fix my gap but the animation is greatly improved and he was able to raise the inframammary fold on the armpit side to give me a smile again instead of a lopsided frown. My abdomen is fairly good after repairing two areas of weakened abdominal muscles. I wore the binder for 6 weeks and have been out for 2 weeks now. I have increased my exercise to at least an hour a day and have been thoroughly cleaning my house. I do notice swelling again after so much exertion and it gets very tight and hard. I think I am going to ask to see the lymphodema physical therapist and see if this fullness is a fluid issue. If not, hopefully it can resolve itself over time.

    I am sure I will not need anymore revisions.

    Next week is my appointment with the medical oncologist and the following week the ophthalmologist. I also am scheduled to do a bone density test on Friday. It has been 2 years so I am praying for good results. My last one showed my bones to be 20 years younger than my physical age. Since the AI is known to be hard on bones I am very interested to see how mine faired these first 2 years.

    I am hoping everyone is continuing to heal nicely.

    Pnw, I did not have a cat. My doctor insisted my dog (miniature schnauzer) be kept outside or take a vacation to one of my kids homes for at least 2 months. I got lucky, the weather was nice and he enjoyed being outside most of the day and slept in the garage at night. He had company though, we had a lab who was an outdoor dog to run around with. It worked out ok even though I was glad when he could come back inside. I missed having him under my feet. I really miss him he passed last March.

    For those waiting, I am sending blessings for patience and peace. The waiting and preparing is such a struggle.



    .

  • Falconer
    Falconer Member Posts: 801
    edited April 2017

    Jb- that's great news! Your story can inspire us all as it sounds like you're quite happy and feel good. I'm so happy for you. Now, how does one start with the bones of a 25 year old? I went for a run yesterday, did a bunch of yard work, and played hopscotch with my little one. This AM I have many many aches! Good luck with the bone density test, Jb. Hope it shows your youthful inner self!

  • cdv4251992
    cdv4251992 Member Posts: 110
    edited April 2017

    Jbdayton, I'm glad to hear everything is going so well. I can't wait to be able to exercise again. I'm wondering about swelling also. Every time I ask him, he says he's not concerned. But when I ask how long it will last and when it will start to diminish, I get no response, just he's not concerned. I'm going to address it yet again when I go back next week.

    I start back to work on Monday. I called the PS office to get my letter releasing me and apparently the doctor only released me to work part time, which is fine, but he said nothing about that when we talked about it on 4/7. My employer is fine with it and being surprisingly accommodating, but getting the short term disability people to respond to me is another matter.

    I hope everyone who has had surgery is recovering and resting.

  • RTChris
    RTChris Member Posts: 17
    edited April 2017

    pnw, I can maybe touch on the kitty issue. I have a houseful of pets. I have a small shihtzu/chihuahua that would surgically attach herself if she could, and I am a professional breeder of savannah cats and have 3 that currently live in the main area of my house with me (plus the 4 week old baby born before I went in for surgery). My family is taking care of litterboxes and other potentially risky factors. As for the loving, I've been keeping them on the thighs or beside me on the couch (I keep pillows beside me that I let them lay on). They do still try to sneak up towards my chest or 'lap' but I just keep moving them over. So far, so good but I've only been home for three days now.
    I hope you find something that works for you, I know how much your pets love can make you feel better.
    (I just remembered you had your surgery yesterday - I hope it was a huge success, and you are feeling minimal pain and discomfort)

    To everyone recovering I hope things are going well, and to those waiting - I am so happy I did this, things are getting easier every day. no regrets.

  • Amanda45
    Amanda45 Member Posts: 1
    edited April 2017

    hello, my name is Amanda Castro and I was diabetes with DCIS stage 1on my left breast in March 2016. I had a prior lump in 2004 on the right breast and it was benign so I elected a bilateral mastectomy with immediate reconstruction. I just wanted to avoid any further issues or re-accurance. I have had one revision so far. My year will be in May 2017 and I was told by my surgeon that no further testing or mammograms will be needed because it's belly fat. I'm really concerned about it just would feel more at ease if yearly tests could be done. Does anyone have any input on this? Thanks so much and prayers for everyone!

  • jbdayton
    jbdayton Member Posts: 163
    edited April 2017

    My MO and PS both said the same thing in regard to no further tests unless a problem appears.

    I had a hard lump and called my original BS that diagnosed me and she wanted a yearly mammogram and ultrasound for 5 years. Luckily my lump was just radiated tissue. I schedule through her and send results to my MO. Neither doctor think there is any need to do an MRI or a Pet-scan. The only other yearly tests are pap smear and bone density.

    I see my MO every 6 months he does a manual breast check. I see my BS yearly she does an ultrasound and mammogram. I see my radiation oncologist yearly and she does a manual breast check. Strategically making one appointment every 3 months allows me to be seen quarterly. Not sure what the plan will be after 5 years.

    I don't know if there is a standard protocol but insurance has not given me any problem with these appointments and tests.


  • Beckyb2016
    Beckyb2016 Member Posts: 12
    edited April 2017

    hi all! My name is Becky and I'm in Atlanta, Georgia. Preparing for a DIEP flap surgery 5/1. I'm a bundle of nerves. I was diagnosed last November and completed chemo 3/31, so this has been such a whirlwind!

    I was curious about stairs after surgery, I have an appointment with my PS next week but am anxious to get some plans made. Will I be able to do stairs? We are in a two story with all beds and bathrooms ( with showers) are upstairs. Also I read somewhere that I may need to purchase larger panties? One last thing, is a recliner a must?

    Thank you all for your help:

  • moderators
    moderators Posts: 8,743
    edited April 2017

    Welcome Amanda45 and Beckyb2016!

    We're so happy you found this amazing support space. You're sure to get lots of advice and answers here soon.

    Thanks for joining, for posting, and we look forward to hearing more from you soon!

    --The Mods

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited April 2017

    Becky, you don't need a recliner. I had a 7" wedge for my bed and lots of pillows. Others just use pillows.

    Stairs are dicey. You'll spend the first few days in the hospital, but I was pretty shot for the first few days at home. Will someone be with you that you can stay upstairs for the most part and limit yourtrips up and and down?

    Amanda, I can appreciate your fear, but manual exams should be enough. You don't need the added X-rays after all you have been through.

  • trishyla
    trishyla Member Posts: 698
    edited April 2017

    Hello ladies,

    Had my Bmx on April 4th, with immediate DIEP flap reconstruction. Everything about the surgery went perfectly. My veins were better than they thought, and there was plenty of available tissue. My surgery was finished in just under 11 hours. Much less than the 12 to 16 hours they told us it would take. My breast surgeon did a sentinal node biopsy on both sides and saw nothing in any of them. Yay!

    City of Hope, where I had my surgery done, is an amazing place. You get a private room with one on one nursing for the first 24 hours. Wow.

    Maybe it's because it's a not for profit, but every single person I met at that hospital was genuinely happy to be there. Made a huge difference in the quality of care I received. I couldn't have asked for better.

    Tried to post a couple of times when I was in the hospital, but they kept getting eaten. Didn't have the patience to keep trying.

    My recovery from the actual surgery was going so well that they were going to send me home after only three days. The only issue I had was a bad cough and shortness of breath. My plastic surgeon's PA was concerned, so she ordered s chest xray. Turns out I had a collapsed lung! Must have gotten nicked during surgery. They put in a chest tube, kept me in the hospital for a couple more days, and now I'm home, and as good as new! They even took out 3 of the 4 drains yesterday!

    I feel like I've been so fortunate thay things have gone so well. Hoping that things go just as smoothly for all the ladies who are getting ready to have their surgery.

    Good luck!

    Trish


  • Falconer
    Falconer Member Posts: 801
    edited April 2017
    Trish,
    Thanks so much for sharing your story! You sound so positive considering the challenge of the collapsed lung. Best to you for continued healing.
  • BlackBear
    BlackBear Member Posts: 5
    edited April 2017

    pnwgram, I too have a sweet kitty (at least she's sweet to me!) who enjoys snuggling. When I had my first mastectomy, it didn't heal properly and I had a lot of dead tissue that needed deep debridement. Also had to have a skin graft, where the PS took something very much like a vegetable peeler to my thigh and put that thin layer of skin over the portion of my chest that hadn't healed. Also used a wound vac. I used a recliner for a few weeks for sleeping. I couldn't have the cat on my lap because the skin graft donor site was quite painful. And having her sit on my chest seemed like a really bad idea too! So I kept an extra pillow on top of me. Oddly enough, that served as a deterrent most of the time and on that occasion where it didn't, it provided protection for me. When I was awake, I could push her down to my calf area. My big concern was when I was sleeping. She is a stealthy snuggler.

    Your cat will forgive you no matter how much you have to restrict her access to you for a brief time.


  • BlackBear
    BlackBear Member Posts: 5
    edited April 2017

    I'm scheduled for a prophylactic left mastectomy with bilateral DIEP reconstruction mid May. Great doctors at Wake Forest (an NCI comprehensive cancer center). I posed a question a while back about whether or not a CT scan would be needed to assess the vascular structure in my abdomen and pelvis. My PS explained very carefully why it wasn't always needed with women who have a lot of tissue in their belly, but I didn't retain it well enough to pass it along accurately. It had something to do with overall amount of the tissue that was going to wind up as breasts and the amount of vascular material that would need to be transferred to support it. In any rate, I'm a real pear so I carry my weight lower down, with not all that much in my belly. He ordered a CT scan and they found what the radiologist described as a possible branch duct IPMN on the tail of my pancreas. I went to see a pancreatic surgeon who talked me in off the ledge. It's way too small (7mm) to even biopsy it at this stage and pancreatic surgery is an inherently dangerous proposition. Best to wait 9 months and see if it changes. I've read tons of research online about how IPMNs can become malignant quite quickly and the waiting game makes me nervous, but I think that's just the cancer life. We are always waiting for something. It starts to feel like spiders waiting for seven shoes to drop!

  • Hammie28
    Hammie28 Member Posts: 29
    edited April 2017

    Becky: I am in Georgia too, and had my surgery February 28. Where will yours be at? I think you will be able to climb the stairs just fine by the time that you get home. You may not be running up and down them all day long, but if you can get set up in the bedroom with a bathroom nearby and limit your trips I think you will be just fine. I do have to tell you that for me the recliner has been a must have! I could have survived without it, but having it has been nice! Even now I'm still sleeping in it every night. I had a wedge but just couldn't get comfortable with it in my bed. I bought larger panties and didn't need them! My incision is above my normal bikini panty line.

    I hope everyone else is doing well. I'm recovering just fine

  • MichCali
    MichCali Member Posts: 44
    edited April 2017

    HI Everyone, I am new to this group. I was dx with triple negative bc and just finished my chemo. I am scheduled for a diep flap in July.

    All the information on here has been so helpful--thanks!

    Have a good weekend!