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Topic: 2018 DIEP Surgery

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: Jan 19, 2018 01:42AM - edited Aug 10, 2018 09:28AM by TWills

TWills wrote:

Please PM me if you'd like to be added to our surgery list or if something needs to be edited. Sometimes it can get lost in the thread as fast as it moves. Thanks!!

I'd like to welcome future DIEP ladies and thank you for sharing your journey, and also thank past DIEP ladies who are so graciously sharing their experience and advice! We are all learning so much from each other!

Update: So it looks like we've got a good thread going, if you've had DIEP recently or not so recently we'd love to hear from you. Support and positivity are very much appreciated!! I'll try to stay on top of updating the dates and such but help me out if I need to fix or update anything:)

Hello, just wondering if we should start a new thread for 2018 DIEP. I've seen the January 2018 Surgery thread and the 2017 DIEP which are great so I'm not sure if it's needed so let's see. March 2nd is my Bilateral DIEP Surgery date.

STAGE 1

Fme Feb 2

Lifewins Feb 5

2002chickadee Feb 5

Newusernam3 Feb 12

MommaGin Feb 14❤️

Dr Boutros, Houston TX

Casun19 Feb 19

Mitzi458 Feb 21

Dr Tseng UCLA

bella2013 Feb 22

Baptist MD Anderson Jacksonville

Help3 Feb 23

Dr LeFaivre & Dr Robinson Charlotte NC

TWills63763 March 2

Dr Klein & Dr Lee

Orlando Health/UF Health Cancer Center

Opt4Life March 7

SadieSue09 March 12

Scorpiogirl March 13

Kahnartist March 16

Outdoorsy March 19

Dr Levine Dr Allen NY

Hydrangia March

Dr Marke Burke Dr Thom Loree

Buffalo NY

Just Me2 March 2

Staceysjourney April 9

Marg2018 April 10

CyberCathy April 11

Dr Momeni

Stanford CA

Jsm22 April 17

ScubaMom24 April 30

Beth Israel Deaconess Boston

Finn21 May 2

Dr Sean Boutros

Shaleae May 10

Dawnann May 15

NOLA

Primrose24 May 17

Brigham & Women's Boston

Dr Pomahac

Parachutes May 30

Teaberry11 June 4

CarolDee June 4

Cev20 June 26

Justkeepmoving June 29

Leatherette July 2

Dr Beschilian

Polyclinic Seattle

OCDAmy July 6

Washington University/Siteman Cancer Center

KLWilliams22 July 9

Dr Bajaj

St Anthony's OKC

carmstr835 July 10

Dr Pelletier Dr Lui

CTCA Zion

Lanne2389 July 17

Carmen71 July 18

Elijahgirl August 7

Dr Wang & Dr Jatoi

University Health San Antonio TX

Mustlovepoodles August 17

Dr Wise

Nola

SoniaL August 22

Dr Robinson &Dr Korn

Charlotte NC

Shellybeans Sept 10

Dr Lee & Dr Klein

Orlando Health/UF Cancer Center


STAGE 2

Mitzi458 May 10

Bella2013 July 20

Trishyla July 26

Dawnann August 24

Nola

TWills August 30

Dr Klein

Orlando Health/UF Cancer Center

Casun19 August 31

Teaberry11 Sept 11

Cev20 Sept 18


Dx 11/2016, IDC, Left, 4cm, Stage IIB, Grade 3, 1/14 nodes, ER+/PR+, HER2- Surgery 12/12/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 2/2/2017 AC + T (Taxol) Surgery 7/9/2017 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 7/30/2017 Whole-breast: Breast, Chest wall Surgery 8/27/2017 Hormonal Therapy 11/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/2/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Posts 1321 - 1339 (1,339 total)

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Aug 10, 2018 12:23PM Finn21 wrote:

Thank you so much chicks! Suburbs...4th surgery? Gah! My 2nd to take care of the dead tissue, was like my Phase 2, he still wants to do some fat grafting but I want to let them settle a tad to see what we are really dealing with. I still have to have the ovaries out, thinking end of October and he said we can do it during that surgery because he knows my OB/GYN very well and has piggy backed onto that surgery before. Getting back on the table is the LAST thing I want to do right now! Just sitting down and typing this all out, helped clear my head a bunch! Guess I should’ve done that sooner! You are NOT kidding about the patience factor, my goodness! You are all too sweet and I pray for us all, to heal and find some peace

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Aug 10, 2018 01:04PM Suburbs wrote:

Finn21, have no fear as everyone is different. I had phase 2 in December and am pleased with the outcome. I had a dog ear fixed, new nipples constructed and the Ken doll cod piece reduced. No complaints. The third surgery was to remove an infected abscess. The fourth and last will be to even out the other dog ear. I’ll have to wait for months but that will be fine

I totally agree that letting it all out really does help. This is a really lovely group, very caring and supportive. My sense is that everyone appreciates what you’ve been through. Keep on healing.

Dx 1/9/2017, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 1/31/2017 Herceptin (trastuzumab) Chemotherapy 2/1/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 6/20/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/21/2017 Arimidex (anastrozole) Targeted Therapy 2/1/2018 Nerlynx
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Aug 10, 2018 01:38PM Finn21 wrote:

What in the hell is a “Ken doll cod piece”, are you talking about “down there”under the abdominal incision, otherwise known as a FUPA? ;-

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Aug 12, 2018 12:07PM - edited Aug 12, 2018 12:08PM by Leatherette

No crotch bulge here (I think?) , but wondering about how everyone's digestion is going post DIEP.






Age 45 at diagnosis Dx 5/2017, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 6/19/2017 Mastectomy: Left Dx 6/23/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/25/2017 Herceptin (trastuzumab) Chemotherapy 7/25/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/2/2018 Reconstruction (left): DIEP flap
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Aug 12, 2018 10:44PM OCDAmy wrote:

I do have the crotch bulge and I'm hoping that goes away. No digestive problems. I wondered if anyone had dry, peeling skin around the tummy incision. I have dry skin to begin with, I'm assuming it's from the skin stretching.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 12, 2018 11:41PM Lula73 wrote:

my crotch bulge went down slowly but surely. For whatever reason it takes that area the longest.

OCDAmy- if your tummy incision is healed, a quick swipe with cetephil lotion across the scar and surrounding area works wonders for the dry skin.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Aug 13, 2018 07:35AM parachutes wrote:

Finn21, all I can say is I here ya. I am faaaar behind everyone else in my recovery. So much so I kinda gave up on posting becuase no one seemed to be feeling as rotten as I am. You know how a bell curve looks? Well, you and I are the frickin tail. The reply my surgeon (who happens to be over a thousand miles away) gave me was, "Well, everything you're describing to me sounds normal but I guess you're just experiencing it a little harder." Maybe because I've been healthy my entire life and led a very active lifestyle, I had a preconceived notion that I would heal quickly. Boy was I wrong. Thank you for sharing, at least I know I am not alone.

Surgery 1/30/2018 Lymph node removal: Sentinel; Mastectomy: Left Surgery 5/30/2018 Reconstruction (left): Stacked DIEP flap Dx DCIS, Left, Stage 0, Grade 3
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Aug 13, 2018 09:21AM - edited Aug 13, 2018 10:09AM by Teacher01

I will tell you there is more to healing than physical from this surgery. There is an emotional side to healing and I'm dealing with that now.

Donna
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Aug 13, 2018 09:40AM - edited Aug 13, 2018 09:43AM by Leatherette

I hope everyone can feel comfortable and supported posting, regardless of how their bodies are responding from one day to another to the hell BC is putting them through. No one is alone, especially when they are sad or hurting, and need to share it.

Sometimes I post feeling responsible for encouraging others, sometimes I post super-positive stuff because I am truly having a great day, or because I am trying to convince myself that I am.

I don't tend to post when I have a day when I want to punch everyone in my immediate vicinity for being selfish and seeming to have zero empathy, or when I cry because I can't leave my house because it's been a heat wave, I can't tolerate heat due to neuropathy from chemo, and I can't swim because I still have scabs. Or when I just cry, because. Maybe I should, maybe we all should, for our mental health. And maybe we don’t want to, which is okay, too.

I think people are extremely brave and are engaging in self-care if they need to/ want to post about shitty days, healing issues, anger, sadness, or whatever they think others may not want to read. This isn't Facebook....we come here to talk about cancer, which is horrible, and to share whatever nuggets of joy or luck, or good news that may possibly be hidden in the whole thing.

Love you,

L.








Age 45 at diagnosis Dx 5/2017, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 6/19/2017 Mastectomy: Left Dx 6/23/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/25/2017 Herceptin (trastuzumab) Chemotherapy 7/25/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/2/2018 Reconstruction (left): DIEP flap
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Aug 13, 2018 12:19PM Lanne2389 wrote:

Hi Team DIEP,

I'm two days shy of 4 weeks post surgery and am reporting in. I've hesitated to post as my story is a little scary (after the fact) but it all had a great outcome. I had the DIEP procedure, a diastasis recti muscle repair, and a lymph node transfer. My surgery lasted 18 hours - about 8 more than expected. Apparently my 4 previous abdominal surgeries in the 1980s (appendectomy and endometriosis) plus a cesarean 17 yrs ago left my left vein "chewed up and congested" so my Dr had to do a vein graft for the DIEP blood supply hook-up. The initial lymph node transfer "crumbled like tissue paper" because of radiation damage so they had to do it again (first nodes were taken from my groin, second set from my stomach). Had a blood transfusion (the NP at my first check up looked at the surgery report and just said "WOW. You lost a lot of blood.") My Dr said that everything that could have gone wrong did and it was the longest surgery she's ever had. My husband said I looked like the Pillsbury Dough Boy when they wheeled me to my room at 2:30am. I stayed at the hospital from Tuesday to Friday. Had a catheter for two days. Was taking only extra strength Tylenol by Thursday, although it took about 10 days before my head finally cleared. Had 4 drains (one on the side of each boob and two on the "cod piece"), down to one lower drain now but it is not showing signs of abating (my Dr. expected this). I've been a complete sloth and in bed since I got home until day before yesterday - woke up and just felt good so I got up, showered, and went to the movies. By the end of the day was almost upright. The first few days at home did feel as bad as my BMX, but that improved. My muscle repair has been the hardest to recover from (I guess in combo with a tight and swollen but smaller stomach) but I decided to take a good three weeks to let everything heal and I think that worked. Taking daily showers and getting back into post surgery garb was my biggest activity. My abdominal scar is still a bit crusty but I've been keeping it moist with Bacitracin and it looks pretty darn good. My boob scars look fantastic - as light pink as my original BMX was after a year. Stomach and pubic area are still swollen. I had tissue expanders and am SO relieved they're gone. I HATED the feel and weight of them. Nothing is slicing into my armpit now but my side boob is pretty swollen from the node transfer.

My biggest reservation in doing DIEP over implants was the possibility of new scars. After my BMX, my scars were only under my breasts and out to the side but turns out she was able to reused the BMX scars and work with my existing pockets. These babies are STUFFED - I'd say they're at least 25% wider/fatter than my expanders and I can feel the "stuffing" almost up to my collar bone (but granted they're still swollen). My Dr. said the more tissue she could add, the better projection she could sculpt in surgery #2. I'm still wearing my hideous hospital bra and a high wasted Marena post surgical side zip panty girdle that is actually more comfortable on that off. Dr. said to keep wearing some type of medical grade girdle thingy for at least 6-9 months and some type of abdominal support for 18 months. It's doable.

I have to say that except for being groggy for 10 days after surgery, I don't think all the surgery fiascos affected me too much and I have to give my Dr. and medical team huge props for the great job they did with what they had to work with. I'm 100% happy with my decision to switch to DIEP.

Also one other win - I was off Letrozole while in the hospital and have been back on for 3 weeks - muscle and joint pain have not returned (knock on wood).

And a funny story ... when the NP was checking my abdominal scar she got a worried look on her face and brought a mirror over to show me an inch long section where the skin was grey just under the scar - she wasn't sure what it was but didn't like to look of it. Was very relieved when I told her that it was the remains of my tattoo. I like to think its tucked up somewhere in my left boob.

Everyone sounds like they're doing great - some moving faster than others but everyone at their perfect speed. Take care, everyone!

Lanne

Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/3/2017 AC + T (Taxol) Surgery 6/14/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/8/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/15/2017 Femara (letrozole)
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Aug 13, 2018 01:01PM Vslush wrote:

Well said, Leatherette!

Vickki

Dx 6/27/2017, IDC, Left, 3cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 7/23/2017 AC + T (Taxol)
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Aug 13, 2018 03:17PM carmstr835 wrote:

Hi all,

Sorry Finn about your issues. I did read someplace that having the immediate DIEP as opposed to the delayed which is what I had, does present more complications and issues sometimes, I hope you feeling better.

I am 4 weeks + out now and pretty much normal. A bit slower still but more and more energy daily. My incision is almost completely healed a very small 1/2" in the center of my stomach that is still an intact scab, but the surgeon had cleared me for swimming, no jacuzzi or bath yet. I can sleep anyway I want to now, I was very happy to hear that. Stomach sleeping is still too painful for more than 10 minutes or so, but it does relieve my back when I do. Side sleeping is fine, if I prop pillows under me. My breasts do look a bit uneven and lumpy, my radiated one is definitely smaller and there are hard places near my sternum on both breasts my PS told me to massage, but he can fix it in the revision. My stomach incision is quite ugly and much higher than I expected, the PS thinks it might release some before the revision, but if not he can do more revision on that as well. My belly button is not round, it is vertically long and that is not pleasing to look at either. I forgot what he said about that, but will bring it up again when I see him in September. He is thinking my revision will be some time in October. He wanted to know my thoughts on nipple construction and I told him, I liked not having to wear a bra, and a constructed nipple would required me to wear a bra to look presentable, a tattoo would not, so I might opt to just have a tattooed nipple rather than a 3-D constructed one. My MO is prescribing Nerilynx immediately, so I hope I can continue this recovery before it get worse from those side effects...

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/22/2017 Arimidex (anastrozole) Surgery 3/28/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Targeted Therapy 6/27/2017 Herceptin (trastuzumab) Radiation Therapy 9/11/2017 Breast, Lymph nodes, Chest wall Surgery 7/10/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Targeted Therapy Nerlynx
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18 hours ago OCDAmy wrote:

Lanne, so glad to hear from you. I'm so sorry to hear about your long surgery but it does sound like it was a success. I'm curious about the node transfer. Were you having lymphedema? Has the node transfer fixed it? Wishing you continued healing

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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17 hours ago Lula73 wrote:

carmstr- I kept my nipples, and they’re the reason I wear a bra. I like the idea of just tats.

Lanne- what a long road! Glad you’re doing well!!😊


-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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15 hours ago Lanne2389 wrote:

Re node transfer - I have had a bit of swelling in my cancer side upper arm. Not major but definitely there. It is about the same now, post surgery. I asked my MO how successful the surgeries were and he said they're not sure yet as it's relatively new. I think the upside is worth it and hope to see improvement after the surgery swelling goes down. I think I read somewhere that it can take up to a year to see final results.

Right after surgery my whole arm was very swollen but elevating it with pillows fixed that. Before surgery my tissue expander and frozen shoulder hampered normal movement and I think that contributes to swelling. Radiation, too. I'm hopeful that if nothing else, it doesn't get worse. If so I'll consider it a success

When I first met with my Dr to discuss DIEP, she measured my arms and just stated transfer would be part of the surgery, along with my stomach muscle repair. Insurance covered it all so I was up for it. No post op pain or discomfort from the transfer. I still sleep with it elevated.

Lanne

Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/3/2017 AC + T (Taxol) Surgery 6/14/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/8/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/15/2017 Femara (letrozole)
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11 hours ago OCDAmy wrote:

Lanne, sure hope it helps. So far I have not had lymphedema and I am keeping my fingers crossed. One weird thing I had not thought about but am noticing now...I have a few random hairs on my new breast. Gross.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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9 hours ago parachutes wrote:

I have a couple of questions for you ladies that are months out from surgery.

I went camping this weekend and my belly scar was hot so I decided to place a bandana of ice cold cooler water on it. I know some of my stomach is numb but didn't realize the extent. It was a bit frightening feeling absolutely nothing in the center portion of my stomach. I also realize a lot of pain comes from this part of my stomach. When here I thought if something had no sensation it wouldn't be causing pain. Does that make sense? My nurse said it could take years to come back. Has anybody had numbness go away and how long did it take?

Also, do any of you ladies feel like your new breast is "tacking" itself higher up around the armpit? If I extend my arm all the way up the tissue feels almost stuck up there.

Oh one more! For those of you who went out of town for your surgery, did you do a phone pre-op for stage II? It feels like a big disconnect.

Thank you as always!

Surgery 1/30/2018 Lymph node removal: Sentinel; Mastectomy: Left Surgery 5/30/2018 Reconstruction (left): Stacked DIEP flap Dx DCIS, Left, Stage 0, Grade 3
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8 hours ago bella2013 wrote:

Parachutes, I am six months post op and still have numbness. The breast will settle, especially after Stage 2. Be sure to communicate issues you want addressed in Stage 2

Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/22/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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7 hours ago Runrcrb wrote:

Parachutes,

I don’t know that my breast moved when I raised my arm but I definitely had side boob (my PS even referred to it that way). In my follow up surgery my PS removed a good bit of that fullness. When we planned out what to address he commentsd that removing the fullness is simpler than adding. Two weeks post stage 2 i like that my breasts look more alike in fullness and position. I will say that the pain/discomfort from liposuction is more than I anticipated. Hopefully it stops being at the top of mind in the next few weeks.

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap

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