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DIEP Flap Reconstruction 2016

jlstacey
jlstacey Member Posts: 117
edited August 2021 in Breast Reconstruction

I'm reading through the 2015 DIEP Thread and gathering tips:

What to Have at Home:

Walker?

Recliner/Lift chair

Stool for shower

Lots of pillow to support arms and raise knees

Button down pajamas, sized up one size

for drains: post mastectomy camisole for around the house, a lanyard or a necklace of IV tubing to pin the drains to in the shower

Stool Softeners and Prune Juice

Yoga Pants (same size as now)

What to Take to the Hospital

Robe

Book/Tablet

cell phone and charger

ear buds

Biotene Mouth Spray & Ayr Nasal Spray for dry air

Magazines

Toothpaste/Toothbrush

or Colgate Wisps for when you can't get out of bed to brush

Shampoo/conditioner

Body wash

small pillow to use for the car ride home (between your chest and the seatbelt)

comfy clothes for ride home (you can go home in what you came in, just bring a fresh pair of undies)

______________________________________________________________________________

OK, following on the very successful model set by the DIEP 2014 thread, here's one for 2016!

In 2014, Nihahi wrote: Welcome to the 2014 thread. Started as a "home-base" for women considering or undergoing DIEP surgery in 2014, this has become a place of questions, answers, support, courage, tears and smiles. We are from various countries, and are having our consults and surgeries in different locations, and are at different time lines in our breast cancer journeys. We plan to be here in years to come, for women who may find themselves on the same road.

IF you wish your name and surgery to be added to the timeline, please Private Message me with your dates (and locations) for your surgery in 2016. I might miss this info buried in the thread! ;)

Please also note: there is NO OBLIGATION to put your info on the timeline! ANYBODY can join in on this thread if you have something to ask or to say!!

I will include any surgery involving breast reconstruction "with tissue from abdomen", i.e. TRAM free flap. or pedicle flap (if that's still done), Muscle sparing TRAM free flap as well as DIEP and SIEP procedures. Also "stage 2" and nipple recon/tattoos etcTRAM free flap as well as DIEP and SIEP procedures. Also "stage 2" and nipple recon/tattoos etc

January 22...Goldenbride....DIEP Flap...SE Wisconsin

January 25...Myajames...DIEP Flap

January 29...HRwinter16...BMX with DIEP

February 1....Erskinegirl...BMX with DIE

February 2...ducky179...BMX with DIEP

February 5- Mel2328...PAP DIEP....Boston

February 5...kxnll...MX with immed DIEP...UPenn...Philadelphia

February 8...CoolGrammieNC...BMX with DIEP Flap...Charlotte NC...CMC/Lavine

February 11...Lilyn...Bilateral DIEP...Toronto Genera Hospital...Dr. O'Neill

February 11...stellamaris...right MX with DIEP/left redux....Vancouver, B

February 18...Tanyarocks 30...BMX with DIEP...Toronto General Hospital/ Dr. Zhong

February 18- Jlstacey ....Bilateral Delayed DIEP.....Royal Oak, MI Beaumont Hospital Dr. Chaiyasate

February 19...sportysister...DIEP Flap.....St. Francis Hospital, Roslyn, NY

February 25...sugar8...DIEP Flap...UK

March 3...DizzParkMom...DIEP Flap stage 2

March 8...j3nny4...bilateral DIEP...Charlotte, NC....Levine Cancer Inst... Dr. Clavin

March 10...TriNeg...DIEP Flap Stage 3- Tattoos....Vinnie/NOLA

March 14...Bluebird123...PMX left with Bilateral DIEP ... Charlotte, NC Levine Cancer Inst Drs. Clavin and Robinson

March 17...carolinamommy...DIEP Flap...Clarleston, SC

March 18...CarolinaAmy...BMX with DIEP Flap.... Charlotte, NC CMC Levine Cancer Institute/Drs Sarantou and Robinson

April 1...craftysandy...BMX with DIEP Flap....Penn, Drs. Ugraso and Kanchwela

April 6...BigSister-2015...Stage 2 DIEP...Dr. Chu, IU Methodist, Indianapolis

April 8...Teejax...DIEP and implant removal...Jacksonville, Florida

April 8...Fe_Princess...SGAP Flap/Implant Removal....Pyramid Clinic Zurich, Switzerland

April 19...Sablanut 58...DIEP Stage 2

April 28...grateful99...prophylactic Mx right, Bilateral DIEP....Toronto General Hospital/ Drs. Hofer & Reedijk

April...Queenshark...DIEP Flap...Dallas, Texas

May 31..zinny...BMX with DIEP...Victoria, BC

June 2...Kat-ski...DIEP Stage 2...Grand Rapids, MI, Dr. Timek

June 6...Omickijo (Boise)...DIEP Flap...Salt Lake City Dr. Reuben

June 6...jen1...Unilateral MX with immediate DIEP

June 10...JACTsMom...BMX with DIEP

June 14...smrlvr...DIEP...Albany, NY, Dr. Rezak

June 15...Donnar25...BMX with DIEP ...St. David's, Austin, Texas

June 22...Dawn41... BMX with DIEP... Good Samaritan Hospital, Cincinnati OH

June 29... Farmerma... DIEP... San Diego

June 30...Quixhobbit... DIEP... UCSF San Francisco CA

July 12...Slv58 DIEP Stage 2... Sunnybrook Health Sciences Centre, Dr. Lip

July 21...jlstacey...DIEP Stage 2...Dr. Chaiyasate, Beaumont Hospital Royal Oak, Michigan

July 27...Mom4four... DIEP... University of WA, Seattle, Dr. Colohan

July...daboysMumma...DIEP Stage 2...Dr. Momoh, U of M Ann Arbor, NO

August 1...rosiesgirl...PMX w/bilateral DIEP...Dr. Momoh, U of M, Ann Arbor, MI

August 2...Christianna....DIEP flap....Dr. Butterworth...KU Medical Center, Kansas City

August 3...Jwoo...DIEP Flap stage 1...NOAL Dr. Wise

August 3...DragonflyWins...BMX with immediate DIEP Flap....St. Vincent's Breast Center, Indianapolis

August 16...Munlyn... DIEP... Seattle WA

September 14...Dlia... DIEP

September 21...barbski60...DIEP Flap....Colorado

September 29...Damnc33... DIEP ... New Jersey

November 4... Jwoo...DIEP Stage 2....NOAL Dr. Wise


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Comments

  • jlstacey
    jlstacey Member Posts: 117
    edited December 2015

    anybody? I can't be the only one having a DIEP flap in the next couple months.

  • nihahi
    nihahi Member Posts: 1,068
    edited December 2015

    Don't worry, jlstacey....."they" will find you. Maybe post a message on the 2015 thread to let others know too? The 2013 thread is the one I "headed"....it seems the 2014/15 gang continued with the same header.

    I do check the threads from time to time, so if I can be of any help to you, just let me know. Safe surgery and gentle healing to you....you can do this!

  • Mel2328
    Mel2328 Member Posts: 19
    edited December 2015
    Hi. I'm having a newer DIEP surgery in February called a DIEP PAP; (where they take "tissue" aka fat from your thighs and lower butt!) We made this decision after difficulties with implants! Ive been reading previous groups thread and think it would be wonderful to get a new one going for those of us approaching surgery. Thanks! Post often. I think that's the keg to getting a thread going!
  • Mel2328
    Mel2328 Member Posts: 19
    edited December 2015
    Ill go on some other threads and try to get some more people!
  • jlstacey
    jlstacey Member Posts: 117
    edited December 2015

    MEL2238 - I've never heard of that! I would like a DIEP that takes fat from my abdomen, butt and thighs. I think we should talk someone into that, don't you? I'm sorry your implants were problematic. When is your surgery scheduled for?

    Nihahi- thanks! I will put something on the 2015 thread as well.


  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited December 2015

    Hi ladies. As Nihahi said, I am sure you will get lots of takers, esp since you posted on the 2015 group.

    I just had my bilateral DIEP on 12/10/15 so I am still recovering, but learned a lot. I had mine at IU Methodist in Indy with Dr. Chu. Fantastic experience.

    He did his initial training in NY and then a fellowship at Pennsylvania U where they encourage their doc's to find as many perforators as possible when doing a DIEP. It ends up taking a tad of muscle, but significantly reduces the amount of fat necrosis. It must work. I think he said he found 3 perforators for me, and I don't have any hard spots on my noobs at all. I am so pleased with the outcome so far.

    I'll be having stage 2 at some point to at least do nipples. Waiting to see how everything settles before deciding what else.

    After reading more than 1/2 of the 2014 thread and all of the 2015 posts and seeing that everyone was happy with their choice, it gave me great encouragement that this procedure was for me after 2 failed implants due to infection.

    Although I wish none of us needed to be here, it is good to meet you all and have a place to share. Here is to a great 2016! Merry Christmas to all. I got what I wanted for Christmas already: 2 warm, beautiful noobs, that are larger than I expected

  • Sablanut58
    Sablanut58 Member Posts: 5
    edited December 2015

    i will be released from htal tomorrow, so not sure how to make my post into2016; i think a lot of us in choosing diep had issues with wound and infection s.

  • Mel2328
    Mel2328 Member Posts: 19
    edited December 2015
    Hi ladies! Merry Christmas! Its been a special one for me so far. After the year Ive had my family gave me beautiful and sentimental gifts. Jlstacey-they do stacked DIEPS. Stacked is when they take from two different donor sites. I asked my Dr if he would do that Bc he said he could only make me a small B with the amount of fat I have. He says that's not something he'd do but would refer me to others if that's what I really wanted. I'm going to stick with him Bc as it is this is a huge surgery. I go for surgery Feb 5.
    Big sister- Ive seen your posts in other group. So happy your here ti guide us! Can you tell us more.... how many hours was your surgery. How long were you in hospital? Were you scared of infection? I got one infection in my expanded that led to emergency surgery and then I still went septic. Infection spread throughout my body. Not good. On IV antibiotics fir 14 days. Then oral antibiotics for 4 weeks. So I'm afraid of infection!
  • SA8PG
    SA8PG Member Posts: 280
    edited December 2015

    Mel

    Sorry to bump in here. I hear you loud and clear on infections. My entire 2015 was about killing infections. If you see my signature line it gives you a sneak peek into all the things my body had to kick. I just want to reassure you that even if you get an infection from the diep (I did) they can clear these up faster because their is no foreign object to contend with. At the first sign of infection you make them culture you period. Even this time I was on the wrong antibiotic until that culture came back with the sensitivities that this thing could be killed by. When I had my expanders they were like a breeding ground for these bugs which is why eventually both had to come out. Remember though that a lot of expanders can be saved everyone's bodies are different. I think mine was just exhausted from giving birth then two weeks later starting chemo then 5 weeks after chemo doing my bmx with expanders. Honestly I am amazed at this entire DIEP process. My ps is such a gifted man. To be able to do what he's done and work with all the previous surgeries and still give me a good result is amazing. I just wanted to give you hope. Sending you lots of love and hugs.


  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited December 2015

    Great advice, SA8. I think everyone should jump in where possible because that is what this forum is for--sharing experiences from a wide range.

    As said, infection after a DIEP is much less of an issue. Bacteria love forming biofilms a on any foreign body. I biofilm is where they have walked themselves off and antibiotics can't get to them. That is why infected expanders or implants are very hard to save.

    I too was septic after my second try at expanders. I was on 2 weeks of IV antibiotics and probably should have had 4 more of oral, but my infectious disease doc decided I must be colonized and wanted me to do this crazy double antibiotic plus wipes to completely wipe out all bacteria I my body and then go for more expanders.

    She had missed the memo that the PS waits 3 months between attempts. When I told her that, she just wrote the scripts for 2 weeks before the next surgery. She mentioned that she wondered what might grow back after destroying my normal flora. I left that appointment pretty upset.

    The PS was unimpressed. He wasn't willing to do more implants. He suggested a Lat flap because that brings in muscle with a blood supply, but it was still an implant. I left that appointment more upset.

    Obviously I found another PS and am no longer upset! (And he didn't think I needed to take all those precautionary antibiotics, so I didn't.)

    After my sepsis I contacted my Integrative Medicine doc. She is an MD but specializes in alternative medicine. She had been working with me because my high homocysteine levels meant that my body was making bad cancer-promoting estrogen rather than normal estrogen. Although she got that reversed, but it was too late, and my BRCA2 state didn't help matters.

    Anyway, she did say that our immune response begins in the gut. I had 3 months after my sepsis to heal. She didn't think it was quite long enough, but she gave me direction.

    She had me buy a bottle of glutagenics (by metagenics) and take I tsp in water a day until it was gone. That stuff heals the gut and promotes the growth of healthy bacteria.

    She also had me start taking Probiophage DF daily. She said her mentor recommended it because it is delayed release and deposits the bugs in the intestine where they belong.

    I kept taking the 50B probiotic that I had been taking all along. You can buy all those things online if you wanted to give it a try.

    Antibiotics really mess us up, so I am glad to know of a way to heal!

  • NotAgain2015
    NotAgain2015 Member Posts: 70
    edited December 2015

    Hi All,

    Just saying hello to the group. Had bilateral mx and DIEP on 12/16/15. Doing well - have posted on the 2015 thread. Best wishes to those of you with upcoming surgery. Good luck to us all in 2016!

  • SA8PG
    SA8PG Member Posts: 280
    edited December 2015

    Big Sister

    Totally agree on the antibiotics. My infectious disease Dr had me taking probiotics the entire time I was on oral and IV antibiotics which total time was almost 7 months. She also had me drink Keifer everyday which I still take to get the good bacteria back in there. Also making bone broth & eating gelatin.

    Thank you so much for all your knowledge Big Sister I know it will help so many. :-)

    Hugs

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited December 2015

    SA8, thanks for adding bone broth to the list! It is so good for healing a gut. I just hate smelling it as it cooks for 24 hours. :)

    I think healthy eating is crucial for good wound healing. It didn't help us prevent infections, but at least the incisions have healed nicely.

    I remember watching a PBS thing ages ago on the effects of stress on wound healing. They created the same kind of mild rug burn on various people--a medical student, a young mom, a businessman, and aretired couple. The retired couple healed in just a couple days while the medical student took two weeks!

    Not much we can do about stress hitting us, but we can control how we handle it. It matters to our healing. Some people use guided meditation. I pray and seek encouragement from my friends.

    When I was first diagnosed and my friends wondered what they could do to help, I asked them to recommend scripture verses. I hand wrote them out on cards with the name of the person who sent it.

    I read through them often. Not only were the verses helpful, reading the name of the friend who sent it would remind me that I was not alone. I used those cards for months. They helped me through all the infections, especiallythesepsis. I also used them to encourage my kids.

    You could ask for anything from your friends: quotations, well wishes, etc. it is those lines title things that mean so much.

  • Mel2328
    Mel2328 Member Posts: 19
    edited December 2015
    SA8PG & Big Sister; thank you both so much. It was so good to be reminded that infections heal easier with no foreign objects in your body. Plus I feel better that your Dr didn't think you needed antibiotics before DIEP. Mine doesn't think I need it either and that worried me. Now I feel better.
    On another note... I was not happy with infectious disease Dr. But hopefully Ill never work with her again. Anyhow she said nothing about probiotucs etc. My infection was in June. Do you think everything is balanced out or should I try something now?
    Thank you both sk much..... OH one last HUGE ISSUE... I'm SO anxious. I cant sleep at night. Nothing helps... tried ambient; lorazapam; vodka ...how will u make it until February. :( thanks!
  • Mel2328
    Mel2328 Member Posts: 19
    edited December 2015
    Jlstacey my surgery is 2/5 in Boston. Its a PAP DIEP. Wish I knew more who have done it. Thx!
    Not again hope your feeling ok.
  • jlstacey
    jlstacey Member Posts: 117
    edited December 2015

    Hi All, I'm OK. I have a cold though, which sucks because we are in the process of Driving from Detroit to Fairhope, Alabama. I have a new baby niece there who was born 12/22 and am afraid I won't be able to hold her because of my cold. :(

    I'm ready for my surgery. I am just ready to have it done and not have rocks on my chest! I haven't had any infections whatsoever, so I guess I'm very lucky.

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited December 2015

    jlstacey, I sure hope you get over your cold so that you can enjoy your niece. Airborne helps, but rest is crucial.

    Mel, I was none too happy with my infectious disease doctor or my original PS at the time of my sepsis. They were only interested in their little part of me and no one was really looking after the whole of me.

    Afterwards, I did nothing but rest for an entire month, and it was still another 3 months before I even began to feel that I had my energy and brain back.

    While I was recovering, I started doing some research on sepsis which helped me realize how dangerous the whole thing was and how nearly I escaped permanent disability or death.

    It also helped me understand why I still struggled with anxiety weeks and months after the fact: many who survive severe sepsis have post traumatic stress syndrome. Mine was pretty mild, but it took every coping skill that I had to overcome the anxiety. None of my docs even bothered to check how I was doing emotionally, despite the fact that I just couldn't stop crying the morning ofmy day of discharge.

    So, post stress could be why you are struggling now with anxiety and sleeping. I'll PM you to chat at some point. There are things you can do, but there is no magic bullet.

    It is never too late to rebuild your immune system. It takes months to do so even after just having a simple 10 day prescription, so can imagine what it takes after the Arsenal they used during your sepsis.

    Plain, non sweetened yogurt or kefir will help, but getting higher doses of the right, live probiotics is usually necessary along with healing the gut to ensure your new normal flora has a healthy environment to flourish.

    On another note, has anyone checked your vitamin D level? Mine was low so I have been taking 5000 U a day for months, and it is still low. Stress really eats up the Vitamin D.

  • SA8PG
    SA8PG Member Posts: 280
    edited December 2015

    Mel I'm so sorry about the sleep. I dealt with that for many many months. Drs love to give us sleeping pills but after awhile you need more or a higher dose because they stop being effective, at least that happened in my case. I started cutting them in half and then got off them all together. I really believe like Big Sister that our gut is where the body heals. I started taking a nightly magnesium/calcium powder called Calms in warm water to help heal the imbalance in my body along with a green super foods daily smoothie called Green Vibrance to help my body rebuild (again this is what hasworked for me so please check with your Dr.) As far as surgery, I was told to wait 6 months after my last infection. What is your doctor saying? I'm praying that you will find the balance your body needs to get restful sleep once again. You've been through a lot so please don't be so hard on yourself. One day at a time. We are here for you. Xoxo

    Big Sister my D3 is still low. I've been taking the same dose for 6 months maybe I need to try a different brand????

  • Lilyn
    Lilyn Member Posts: 156
    edited December 2015

    Hi ladies my delayed bilateral DIEP is booked Feb 11 at Toronto General Hospital. Can't believe I am finally going ahead. I was diagnosed in 2008 with bilateral breast cancer ER positive Her2 positive. Didn't think I would bother I'm now 62 but my surgeon said ladies older than I are definitely doing reconstruction. Reading up on the board with all the great tips and what to expect from 2014 and 2015 DIEP ladies. Best wishes for ladies with upcoming surgeries. LoisHappy

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited December 2015

    SA8, you probably need a higher dose. Doctors are afraid of giving much D because it is a fat soluble vitamin so we can't get rid of any excess.

    But they fail to realize that Vitamin D gets used up quickly in times of stress, especially when we are sick or healing from surgery. Most don't even test for it.

    I am not sure if the brand of D matters. I usually get my vitamins from a health food store.

    Good for you with the greens and all. Whole foods are the best. A high quality, refrigerated probiotic is usually needed.

    Kefir is great because it is a fermented product, but if it has been pasteurized, it will have lost a lot of its probiotics.

    A friend helped me get started fermenting sauerkraut (cabbage). It is easy to do and provides huge doses of probiotics and my cruciferous vegetable to boot! (Store-bought sauerkraut is pasteurized, so no benefits there. You can find unpasteurized at some healthfood stores, but it is expensive!)

    A few years ago I would not have thought any of this mattered, but I am seeing differently now, the more I have read and observed.

    Changing our diet not going to stop or curecancer as some programs have claimed. There is not conspiracy out there by big-pharma witholding some simple cure for cancer. But there are things we can do to help our bodies heal.


  • trvler
    trvler Member Posts: 931
    edited December 2015

    I was told you need K2 with D3 to absorb it better. I haven't started it yet. Italychick told me about it.

  • Ramonica60
    Ramonica60 Member Posts: 9
    edited December 2015

    I had bilateral muscle sparing TRAM flap on 12/21/15 and am recovering. It was supposed to be a bilateral DIEP flap. I will ask at my post op visit why it turned into a TRAM. Rib cartilage was also removed on one side. It was done at Hospital of the University of Pennsylvania in Phila. I did nipple sparing as this was a prophylactic mastectomy. I am almost 60 and figured I am lucky to have not had cancer so far (recently learned I have BRCA....hoping the pathology report is negative. Also hoping the nipples make it as they are not looking great so far.

    Worse part is the unbelievable tightness in the abdomen!

  • Mac2016
    Mac2016 Member Posts: 1
    edited December 2015

    Hi ladies, I am glad to see Ramonica60's post. I had a bilateral mastectomy in spring of 2014 and spent the rest of the year fighting infections from implants. In December 2014 i finally had them removed. I did not want to have any additional surgery so i went for the prosthetics- i really hate them at this point. I have been considering DIEP Flap and am finally moving forward. I will be 60 this spring and had convinced myself i did not need the additional surgery to muck up my life as it did in 2014. I am very glad to read about positive results i see on this thread. Unfortunately when my ps did the implants she also (at my request) did some liposuction on my belly. My new ps thinks that will be ok and she will still have enough arteries to make the DIEP Flap successful. Had a CT scan yesterday to confirm- no results yet. Anyone have a DIEP Flat after abdominal liposuction? Hoping to have surgery in late April.

  • Ramonica60
    Ramonica60 Member Posts: 9
    edited December 2015

    Hi Mac. I would guess that only a PS can advise you on whether you are still a candidate for diep after the liposuction on the belly. Keeping my fingers crossed for you. I had heard and read horror stories about implants prior to my surgery and also did not want the "upkeep" involved with implants.

  • myajames
    myajames Member Posts: 50
    edited December 2015

    Add me to the list! Don't have dates yet, but meet with the PS on Monday. Oncologist and Breast surgeon both support my decision. Let's get this show on the road!

  • PiNKiDC51
    PiNKiDC51 Member Posts: 49
    edited December 2015

    I was recently diagnosed with Invasive Ductal Carcinoma - Clinical Stage 1; ER/PR Positive - in both breasts. When I was first diagnosed (original diagnosis was only cancer in one breast), there was talk about shrinking the tumor using hormone therapy meds prior to surgery. During the testing process, I went for a second opinion at a more well-known facility in our state. After discussion, my husband and I decided that I would go with this facility and the doctors at it. Meanwhile more test results came back and we learned of the cancer in the other breast.

    At this point, the recommendation seemed to go from a lumpectomy to a bilateral mastectomy - not something I was prepared for and not something I've yet accepted. When I asked about the testing of the other "mass" (there's a 2nd in one breast not yet tested), I was informed that I'd need to be willing to miss more work and that essentially I'd need to be more . . . I think the terminology used was "committed." Basically it seemed that based on latest results, the surgeon felt as if it was a forgone conclusion that the other mass would also be cancer. Since this other spot is located far from the original spot diagnosed as cancer, it would (when clear margins are considered) take most of my breast should it be cancer. While the surgeon's recommendation floored me, I decided perhaps going to see a plastic surgeon and learning more about reconstruction would perhaps be beneficial - that maybe learning about this process would ease my fears, stress, and anxieties as far as a bilateral mastectomy was concerned.

    The Plastic Surgeon was very nice, patient, and informative, but I definitely experienced overload - even though I'd done some prior research. After that meeting, I came away with - there is no optimal choice . . . no true win. So, stressed over deciding between a lumpectomy vs. mastectomy and implant vs. tissue (DIEP-flap) reconstruction (should I go the latter surgical route). I've spoken to one survivor regarding implants and another regarding DIEP Flap surgery; however, I also thought I might also try a couple sites like this one to obtain a greater pool of answers/experiences from 45 - 55 year-olds to the questions below:

    1. What influenced you the most in making a particular decision and would you make the same decision? Why/Why not? (Please no true horror stories of various complications.)
    2. What analogy can you provide about your pain level after lumpectomy/mastectomy? After reconstruction (please specify implant/DIEP-flap)? (When I had my first biopsy, I thought that was extremely painful, so I can't imagine these other surgeries.)
    3. How long was it before you could do light duty (such as computer work) after a mastectomy? After reconstruction?
    4. What analogy can you provide regarding the expander experience? (I understand many say they are hard, but having a hard time understanding the level of discomfort, how off my appearance will be in clothing, how they may affect my confidence in public settings as I would be mortified if others could tell, but want to know the truth.)
    5. How would you rate your satisfaction level with your reconstruction? What do you wish was different? (If you did not already specific type of reconstruction in question #2, please do.)
    6. If you went thru reconstruction, what analogy can you provide regarding the amount of feeling you have in your breasts, if any?
    7. Working women, how did you handle things at work? (I've not told anyone as I like a place where I sort of feel my life is normal; however, I'm obviously going to be out for surgery and maybe radiation/chemo, so . . . not really sure how to minimize what I tell - assuming I don't have chemo and my hair falling out doesn't tell for me.)
    8. Working women, how much short-term disability time did you take for the various surgeries? Did you exceed the 480 hours of FML (especially interested in this for those that opted for the DIEP-flap.)
    9. How did you overcome any potential doubts about your femininity? Sexuality?


    Thanks in advance for taking time to read this long post and your responses!

  • moderators
    moderators Posts: 7,884
    edited December 2015

    Hi PiNK-

    We want to welcome you to our community here at BCO. We're sorry you find yourself here, but we're glad you've joined us, and hope you find the support you need!

    Surgery and reconstruction decisions are tough, and very personal. It sounds like you know what is important to you, based on some of your questions. You'll find answers throughout these forums, from many of our members, and we're sure some will be around to share their experiences with you directly! We hope this helps you work through the questions and concerns you have, and that you're able to make a decision that you're comfortable with!

    The Mods

  • grateful99
    grateful99 Member Posts: 180
    edited December 2015

    I am also new to post here but have been reading for two years while going through treatment. Like PiNKiDC51 I had a long list of questions because lots of information is what helped to handle my fear. However, what I learned from this process is that basically, the big decisions are out of our hands and the most important thing is to have a doctor you trust and who will give you answers based on your specific case. If it's big enough cancer you will have a mastectomy and even if you get a lumpectomy you will always worry about the other shoe dropping. If you need radiation, you will only qualify for delayed DIEP and from reading here, DIEP seems to be the best choice anyway. You will have pain meds and your survival will become priority over work. It will take as long as it takes and you will have to deal with it. Your life will never be the same but you will value each day.

  • NotAgain2015
    NotAgain2015 Member Posts: 70
    edited December 2015

    Hi Pink,

    Sorry you have joined our club, but you will find so much helpful info and support here!! I will try to answer some of your questions from my own experience. Everyone's experience is a little different. I do work in technology (so at a computer all day long) and am 57. My first diagnosis, DCIS, was in 2010 at age 51.

    My heart goes out to you. When you are first diagnosed, it really knocks your knees out from under you emotionally. There is so much to take in, so many statistics and they are expecting us to make the final treatment decision. I, like you also sought a 2nd opinion. I'm fortunate to live near several great hospitals and got the 2nd at Duke.

    1. Had a lumpectomy followed by radiation. For the lumpectomy, I only missed one day of work for surgery on a Friday and was back to work on Monday, no problem. Radiation is an odd thing. Everyone's skin fares differently. I did ok, only slight sun burning. I went through this in summertime and I kept riding my horse through it! What I found is it makes you tired. I could be fine all day but when 8 pm came around, I went to bed. You just listen to your body.

    I had a second diagnosis in 2011 on the other breast, thus time, IDC. Same thing, I did lumpectomy followed by radiation. Was easy and straight forward. No one at work hardly knew. I told very few people.

    This year I found a small lump in my DCIS breast that turned out to be IDC. The only option really was mastectomy and my only option was for DIEP reconstruction since I had rads prior. I have a sister that has done tissue expanders etc. because I had had BC on both sides I decided do have a double mastectomy with immediate DIEP reconstruction. The surgery sounds daunting but is very doable. I like the fact that they used my own tissue for reconstruction. I hear that with expanders, your body tends to treat those as foreign objects and encapsulates them and they can become hard. With DIEP, I already have cleavage, I can tell this is going to work out great. I am relieved and excited and thankful!

    The DIEP is 6-8 weeks off for me. I am using my company's short term disability and it is working out great. Easy to initiate, etc. won't be out long enough for FMLA.

    Don't let my three diagnoses scare you, I think my situation is quite unusual, but wanted to respond since I've had 2 lumpectomies and on 12/16 double mast and recon.

    Back to more of your questions...

    6. The are pretty numb, but they are warm, perky and I might not need to wear a bra all the time. It is odd but not bad. I'm sure as time passes I won't pay any attention to it.

    2. Pain after lumpectomy -minimal to almost none. Though I had only one small tumor in each. Pain after mastectomy - because I have done recon at the same time, I would say the first week us tough, but you are in the hospital for up to 5 days for DIEP and pain hopefully managed well there. Then first week home is doable but you need help that first week for sure. Still all in all pain is not bad, it is well managed. I'm two weeks post today.

    9. This is probably the toughest of all! I struggled with that quite a bit in my head, also taking tamoxifen since mine was ER/PR positive. My surgeries were awesome so appearance was not a big deal, but everyone's situation is different. Hoping you have good support from your spouse or significant other. You will find your way through this and afterwards you will move on and be fine. easy for me to say I know, you will find so much support here!!

    Best of luck to you :)

  • PiNKiDC51
    PiNKiDC51 Member Posts: 49
    edited December 2015

    Hello NotAgain,

    Thanks for responding! You are so right about it knocking the knees out from you! Time and again since first hearing the diagnosis, I've felt like I was in a hole that sucking further and further in. Today was no exception. Today I met with the PS's nurse. When I met the PS (at the local facility I go to versus downtown), I did not get to see any images. As I had overload anyway, that was probably good, but today I saw and have been in tears the whole day. I'd intentionally not looked at images online because I didn't want to come across any worst case scenarios, but I'm not entirely sure outside of infections what could be more worse case than I saw today. While my husband wants me to concentrate on the end pictures (and a part of me knows I should), I'm mortified. This is truly a nightmare at this point. I know logically that so many women such as yourself have come out on the other side, but after today I'm just not sure how I'll ever get there.

    On top of the pictures, the nurse also said that the center/facility does not perform immediate reconstructions anymore because the outcome is not good when a woman needs radiation (I'm assuming that means for folks like me that have never had radiation, so it's not a possibility that can be ruled out like it was in your case). I did not gather this when I spoke to the PS and I did not know this when I picked this facility (because I was still at the single cancer stage with the talk of lumpectomy when I made the switch), so I feel this is another blow today. Since I began my research, I've pretty much been opposed to the expanders, but only the other night did I learn about all the infections and such because of them being seen as a foreign object by the body. This just further made me want immediate reconstruction . . . now I'm sort of unsure how to proceed. It's been two months since my original diagnosis - while I'm even less comfortable with all this after today, I do know that I can't procrastinate moving forward - both for health reasons and because my youngest is due to marry at the end of the year.

    Anyway, thanks bunches for the info - even though I'm in a quandary today all the info will be most useful! I don't feel very festive, but wishing you a Happy New Year!