We are 221,139 members in 81 forums discussing 156,105 topics.

Help with Abbreviations

Topic: 2018 DIEP Surgery

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

Posted on: Jan 18, 2018 10:12AM - edited May 16, 2019 07:36AM 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.

——-Phase 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

Lulabella May

Dr Charles Tseng UCLA

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

MCOlivia Sept 5

BethNY3 Sept 6

Shellybeans Sept 10

Dr Lee & Dr Klein

Orlando Health/UF Cancer Center

LPH Oct 1

Moonie_tricks Nov 6

Dr Crisera UCL

Cjzach Nov 12

Ibethewife Nov 26

Atly Oct 1

Kickin-cancersbutt-2014 Oct 23

Mncteach Nov 6

Pharmdgirl7 Nov 6

NOLA Dr Trahan

Frogdog12 Nov 26

tkmadonna Nov 30

Ceecee10 Dec 3

Deweydell Dec 6

Middlemore Hospital Auckland New Zealand


———2019———

Vslush Feb 22

Dlpaquette March 11

Simbobby March 12

HappyGirl1631 March 26

University of Kansas Dr Butterworth

Flynn April 1

Vanderbil

Stephanie980 April 17



—-Phase 2—-


Mitzi458 May 10

Bella2013 July 20

Trishyla July 26

Dawnann August 24

Nola

Ishallovercome August 29

TWills August 30

Dr Klein

Orlando Health/UF Cancer Center

Casun19 August 31

Teaberry11 Sept 11

Cev20 Sept 18

Carmstr835 Oct 16


——Phase 3——

TWills Jan 18 2019 Fat Transfer

Dr Klein

Orlando Health/UF Cancer Center

——Phase 4——-

Twills May 10 2019 Fat Transfer

Dr Klein

Orlando Health/UF Cancer Center

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 3/1/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Page 68 of 72 (2,132 results)

Posts 2011 - 2040 (2,132 total)

Log in to post a reply

Apr 10, 2019 03:12PM - edited Apr 27, 2019 11:17AM by rmgrmg

Most studies do not think DIEP increases local reoccurence. And CRAFT or Cancer Recurrence After Fat Transfer was a Plastic Surgery Foundation million dollar investment study started in 2011 to investigate the safety outcome long-term of Adipose Fat Transfer. Thus far participators such as Mem. Sloan Kettering and MD do NOT see increased risk reoccurence with AFT , adipose fat transfer, status post bc diagnosis...

https://biblio.ugent.be/publication/8602559/file/8602570

Survival and risk of breast cancer recurrence after breast reconstruction with deep inferior epigastric perforator flap.

https://www.ncbi.nlm.nih.gov/pubmed/29999520

Does breast reconstruction after mastectomy for breast cancer affect overall survival? Long-term follow-up of a retrospective population-based cohort.

https://www.ncbi.nlm.nih.gov/pubmed/25719710

Effect of delayed autologous breast reconstruction on breast cancer recurrence and survival.

Lindford AJ1, Siponen ET, Jahkola TA, Leidenius MH.

Cancer Recurrence After Fat Transfer (CRAFT)- A Multicenter Case-Cohort Study

TM Myckatyn, MD, FACS, FRSCS,1,11 IJ Wagner, MD,2 BJ Mehrara,

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5428547/

https://www.plasticsurgery.org/documents/Advocacy/PSF-FDA-Presentation_08-01-2016.pdf

https://www.ncbi.nlm.nih.gov/pubmed/24045967

https://www.researchgate.net/publication/256705369_Effect_of_Delayed_Autologous_Breast_Reconstruction_on_Breast_Cancer_Recurrence_and_Survival

Racheal
Log in to post a reply

Apr 10, 2019 03:22PM Runrcrb wrote:

rmgrmg - while flap loss is a risk, hernia is not with DIEP as the muscle is left intact. Just the fat and blood vessel are mo

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 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
Log in to post a reply

Apr 11, 2019 10:31AM - edited Apr 11, 2019 10:31AM by Flynn

Good morning. My bilateral diep was the 1st, so i'm 11 days out. Today's my first day with no Tylenol or other pain meds. Things have gone pretty smoothly. My issue was that mon evening my abdominal binder seemed to be really itchy. My dh came to help me with my drains and when I took my shirt off, I was covered in hives. I was horrified. My sister (a dr) told me to take Benadryl right away. We decided that it could be my gabapentin or the waterless shampoo that I used earlier in the day. My PS doesn't want me to shower until my post op appt so i've been doing sponge baths, etc. Eventually we figured out that it was the gabapentin. I'm feeling good now for the most part. Walking hunched over hurts my back, so i'm going to try a slow treadmill walk holding onto the bar to support my back. I'm eagerly awaiting my appt next tues. Luckily HBO has had a Game of thrones marathon this week so I've been losing myself in tv- I very rarely watch tv during the day so it's been a novelty. Fingers crossed that my healing keeps going smoothly! Hope everyone else is coming along!

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
Log in to post a reply

Apr 11, 2019 12:13PM Trishyla wrote:

Yay, Flynn. You're getting past the worst of it. The drains and the hunching. Once you get past those, hopefully it'll be clear sailing.

Best wishes for continued healing.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
Log in to post a reply

Apr 11, 2019 02:53PM - edited Apr 11, 2019 02:55PM by Kellyruss

If I opt for DIEP surgery can they makea scar overtop of my c section scar or will I have 2 vertical scars now? Any input on Tram v DIEP are welcome.

Log in to post a reply

Apr 11, 2019 04:48PM OCDAmy wrote:

Kelly the DIEP scar is horizontal from hip to hip. DIEP is superior to TRAM as they don’t have to use any muscle.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant 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
Log in to post a reply

Apr 12, 2019 12:34AM - edited Apr 12, 2019 12:41AM by Dlpaquette

Kelly, the diep flap is preferred, they do a CT with contrast first to map your blood vessels to see which ones will work and where they are. Since people do not have on fees that will work and then a Tram flap is needed. I did not have the need blood vessel on one side and was having a bilateral diep flap so they had to change it to a tram flap on that side. I was totally prepared for the worst after the doctor told me I would not even feel like leaving the house for 4 weeks and told me I would wake up from surgery and probably question my decision, although assured me I would be happy with my decision after surgery. My first week was awful, but not once did i regret my decision. For anyone with back issues that have a history of needing cyclobenzaprine, make sure you have it when you are trying to walk hunched over. I did not and the severe muscle spasms made walking torture. Once I got home and took the cyclobenzaprine I have at home, the pain was suddenly bearable.

Another thing I learned, the drains hurt the most due to pulling on the stitches constantly for weeks. If your doctor does not put a drain dressing on, ask about it. I saw the PA one time and mentioned the pulling stitches were the worst and she told me they had a dressing for that...I have had 4 surgeries with drains and I am just being told this???? Grrrr!

Even if the cesarean scar is lateral there is no guarantee they can combine them. I have a cesarean scar that is very low but my blood vessels were so high they could not quite pull the skin low enough so I have a double scar there, he does plan on fixing that during phase 2. It is a very long scar, mine is 2 feet across, a month out I have several areas opening so I am thinking this first start will not be pretty, but it will be fixed in phase 2.

Dx 12/12/2017, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 1/23/2018 Mastectomy: Left, Right
Log in to post a reply

Apr 12, 2019 09:44AM - edited Apr 12, 2019 09:45AM by Flynn

Thanks much, Trish!

Kelly, I do have a different incision for my diep, higher than my c-section scar. I had the abdominal ct to check for blood vessels. My surgeons said I was on the low end of ok- probably just enough to do the diep. When they went in, they were pleasantly surprised to find more vessels than expected. Conversely, I was supposed to be in a clinical trial where they attempt to connect nerves so I would get some feeling in my breasts eventually. I didn't have enough nerves in my tissue to proceed, so that part's out. I don't know if patients end up with any sensation after tram as I only researched diep.


Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
Log in to post a reply

Apr 14, 2019 10:50PM Lolis wrote:

Hi Ladies

I have been lurking here for the past months waiting for my surgery date, which is May 16th. I am wondering if most of you were off the strong pain meds by week 4 or earlier. I am wondering if I can work from home starting week 3. I was on my work phone the day after my mastectomy but that was 5 years ago. I know everyone has a different experience and pain tolerance but just looking for a general sense of pain level.

Thanks.

First dx @ 33, mets @ 36.....my lucky number is 3 😊 Dx 3/22/2014, DCIS, Left, 5cm, Stage 0, Grade 2, 8/24 nodes, ER+/PR+, HER2- Dx 3/22/2014, IDC, Left, 5cm, Stage IIIA, Grade 2, 8/24 nodes, ER+/PR+, HER2- Surgery 4/22/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 5/15/2014 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 9/11/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/29/2014 Breast, Lymph nodes Dx 12/6/2017, IDC, Left, Stage IV, metastasized to other, Grade 3, ER+/PR-, HER2- (IHC) Targeted Therapy 1/8/2018 Kisqali Hormonal Therapy 1/9/2018 Femara (letrozole), Zoladex (goserelin) Surgery 5/16/2019 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Apr 15, 2019 12:10AM Trishyla wrote:

I was off strong pain meds by day ten. I just used tramadol to sleep at night. For me it was more discomfort than actual pain.

By week five I was dancing in high heels at my chemo buddy's 50th birthday party. I was 58 at the time.

Hope all goes well for you, Lolis. Keep us posted.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
Log in to post a reply

Apr 15, 2019 10:44AM - edited Apr 15, 2019 10:45AM by Flynn

Lolis, i'm two weeks out from surgery today. I disliked oxy so after I took that twice in the hospital, they switched my meds up. I came home on day 3 with Tylenol, gabapentin & tramadol. I had my sister cut my tramadol in half so I could take smaller doses. Every morning I woke up and gave myself a few minutes to assess how I felt and if I needed pain meds. I'm not one to suffer needlessly but I take a minute to figure out the least I can take and feel ok. I found the gabapentin very helpful for calming the irritation of the drains & my binder. Then suddenly I was allergic to the gabapentin so I stopped that. Right now I take some Tylenol before bed and that's it. The Tylenol is for my back which is tired of not moving more. My body doesn't like enforced rest lol.

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
Log in to post a reply

Apr 15, 2019 10:57AM Imdtm23 wrote:

Lolis,I had BMX with immediate Diep. In the hospital, they gave me morphine and oxy and tylenol. By day 3 i was off the morphine and barely taking the oxy and off everything but Tylenol when i left the hospital on Day 5. I am not a fan of pain meds, I really do not like the way they make me feel. I mostly took tylenol when I need it for pain and that was rare. I agree with Trishyla, it felt like more discomfort than pain. It felt like everything was tight. Good Luck.

Dx 9/12/2018, IDC, Right, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/16/2018 Lymph node removal: Sentinel Surgery 12/10/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 1/13/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Apr 15, 2019 07:09PM Lolis wrote:

Thank you Ladies, I appreciate the feedback.

Will keep you posted.


First dx @ 33, mets @ 36.....my lucky number is 3 😊 Dx 3/22/2014, DCIS, Left, 5cm, Stage 0, Grade 2, 8/24 nodes, ER+/PR+, HER2- Dx 3/22/2014, IDC, Left, 5cm, Stage IIIA, Grade 2, 8/24 nodes, ER+/PR+, HER2- Surgery 4/22/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 5/15/2014 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 9/11/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/29/2014 Breast, Lymph nodes Dx 12/6/2017, IDC, Left, Stage IV, metastasized to other, Grade 3, ER+/PR-, HER2- (IHC) Targeted Therapy 1/8/2018 Kisqali Hormonal Therapy 1/9/2018 Femara (letrozole), Zoladex (goserelin) Surgery 5/16/2019 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Apr 15, 2019 10:59PM Dlpaquette wrote:

I am wondering if anyone who had to have their diep flap changed to a Tram flap has/had pain where the muscle was removed? I have this pain in the side they took the muscle, a few inches above the incision and if i spend an hour or so cleaning and do a couple other small things around the house the pain gets much worse, so much that it makes me nauseous, It always hurts more at night but the more I do the more it hurts. I am 5 weeks out and was hoping to be going back to work soon. I also have 6 areas on my incision that makes wearing work clothes a bit too painful but a wound care nurse is working to get that healed. I am just hearing many say how great they feel after a week or two and am not sure if this is the muscle or just me being a wimp, I usually have a pretty high pain tolerance.


Dx 12/12/2017, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 1/23/2018 Mastectomy: Left, Right
Log in to post a reply

Apr 16, 2019 03:43AM Lanne2389 wrote:

So I’ll just throw this out - I was a big baby after DIEP and thought the first week rivaled BMX (I had my rexus muscle fixed too, some surgery complications, and drains for 5 weeks, so that added to my pain and mood). After that first week, though, Tylenol plus a little gabapentin for nerve pain did the trick for the most part.

After BMX I only took Tylenol thinking I was a martyr to the cause and good for me for staying off heavier stuff. But in hindsight, had I taken stronger drugs for pain, I would have been up and moving around more and sooner, and I think iwould have made a faster recovery over all. Sometimes drugs can be your friend.

Lanne

Lanne Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/2/2017 AC + T (Taxol) Surgery 6/13/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/7/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/14/2017 Femara (letrozole) Surgery 7/16/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Apr 23, 2019 06:49PM Mavericksmom wrote:

I had DIEP reconstruction the first week In January 2019, hope it is okay I post here, I'm depressed.

Has anyone else had issues with open wounds from previous radiation burns? I was burned badly when I had radiation for IDC in left breast in 2003. My PS said there could be skin issues from that when I saw him before the surgery, but I didn't expect what I have been dealing with.

I have three open wounds, one is 4" X 3", one is 2" X 1" and one is 1/2" X 1". Right after surgery these areas developed thick black skin, like a piece of burned meat on a grill. My PS made it sound like it would heal in about 3-4 weeks and was no big deal. He said the black areas would just “fall off" and healthy new skin would grow in it place.

It took 6 weeks just to get the black skin to come off, and that was with the help of Santyl cream! The whole time it smelled so bad because the skin was decaying! Since then the wounds have been bleeding and oozing. Tomorrow will be 15 weeks and I am still dealing with open wounds that require bandaging!

The PA tried to tell me I would be totally healed by my appointment next week. Ha! No way!

I have stayed out on disability because I didn't want to go back until I was healed. I have run out of time and must go back May 6.

My PS acted like this was no big deal and happens a lot, but I can't find anyone else who has gone through this. I went to a cancer hospital.

Please, anyone know anyone else this happened to?




Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)
Log in to post a reply

Apr 23, 2019 08:17PM Runrcrb wrote:

mavericksmom, I didn’t have your issue but did want to respond. I’m sorry you find yourself in this situation. I’m disappointed that your PS hasn’t been more responsive. Is it something you can get another PS to look at? Or a wound specialist (if that is a thing)? While I didn’t have serious burns from radiation, the skin was tight enough that my PS removed the lower half of the skin on my breast and replaced it with belly skin. This doesn’t help you now of course. I hope you heal soon.

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 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
Log in to post a reply

Apr 23, 2019 09:58PM Mavericksmom wrote:

Thanks for the response Runcrb!  There actually are wound specialists, many of whom are plastic surgeons. A few days after my last appointment I searched for help on the internet, and found a group of wound specialists near my home. They only see patients by referral, so I called my PS and asked if seeing a wound specialist would help me. The response was NO! The nurse said the doctor wants me to continue to wash with soap and water, pat dry and cover with the non-adherent bandages! 

I thought the PS would do a skin graft months ago, but he never mentioned it. I can't see another PS now because this one is the one who filled out all my disability forms and is the one who I need a note from in order to go back to work.

If he brought up surgery now, I would have to stay out on disability longer, which means digging into savings even more. Disability only pays a fraction of what I make working. I prefer to work. I know my health must come first, but if he told me I need surgery now, it would feel like a slap in the face! I would wonder what else he isn't telling me.  Surprisingly he is very highly regarded as a PS, so I am praying he knows what he is doing.  Of course, I haven't seen him in months.  I go to a cancer hospital and I never know who I will see, doctor, PA or NP,  even though my appointment says it is with a particular doctor.  I think my case has been passed on to the PA.  I know PA's are highly trained, but I feel as a patient, that I am paying to see the doctor and I want to see a doctor.  I am just not assertive enough to say that at the appointment.

Another issue that worries me is I have a distinct bulge on the right side of my abdominal incision. I think it is a hernia although I never felt a tear or pain like it tore.  I told the PA about it at my last visit.  I asked if he could check it while I stand as that is when it is more noticeable. He did, had me cough a few times and said it wasn't a hernia. Whatever, it doesn't feel like I think it is supposed to, but how could I argue with him?  I asked him to check and he did. 

Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)
Log in to post a reply

Apr 24, 2019 09:04AM - edited Apr 24, 2019 09:07AM by rmgrmg

Well, at least you got your bulge checked out and its not painful, even after coughing. Does it ache when you lift and exert it? If not probably not hernia. And yes, my PS said a bulge but not true hernia.Did your PS say you could eliminate your bulge via exercise or maybe small surgical procedure? And did he say it would harm or cause you problems other than cosmetic concerns?

Racheal
Log in to post a reply

Apr 24, 2019 10:41AM Mavericksmom wrote:

rmgrmg, I only saw my PS for about 5 mins., 8 weeks ago. I am not sure if the way my PS group is run is standard, or standard for a teaching, cancer hospital. After my surgery my follow up care consisted of a nurse asking questions, followed by a fellowship doctor asking me questions followed by the PS who would spend no more than 5 minutes with me. I could ask questions, but I didn't notice the bulge when I saw him the last time, mostly because my breast wounds were a hot mess.

At my last follow up visit, I only saw the PA, the PS never even popped his head in the door. I don't feel any doctor/patient relationship, meaning that even though his credentials are great, I don't trust what the PA says.

I'm letting it go. If I have problems later, I will see my primary care doctor for advice. I feel I have been on my own to recover, with little to no help from anyone associated with the PS, or even my breast surgeon.The only positive thing the PS group did for me after surgery was to fill out my disability forms. I am very thankful that I could get time off from my job to recover.

My sights now are set on going back to work and a world that doesn't revolve around cancer. It is discouraging for me to have the breast wound issues and have no one to share my concerns with who also had them. The bulge in my abdomen I can live with.

Thank you so much for responding to my post. It makes me feel better knowing that there are people here to lean on when I have a “down" moment or day. I love BCO because we do care about each other and there is more support here than many of us get from the medical community

Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)
Log in to post a reply

Apr 24, 2019 11:59AM Vslush wrote:

Hi Mavericksmom,

So sorry you are going through this. It's awful to know that something isn't right, yet the professionals blow you off like you're expecting too much/too soon.

I was able to get around the wound specialist referral by going to the ER. When they saw the condition of my wound, they called one in immediately. It was never an issue with insurance.

Any wound that won't heal or show improvement in that amount of time should have been referred already. Please don't let some Drs ego make you feel like a demanding patient. We pay them for a service just like we pay contractors, and they are paid handsomely. If your roof is still leaking, you either demand it be fixed or get a new roofer.

Good luck, and please let us know how things go.

Vickki


Dx 6/27/2017, IDC, Left, 3cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 7/24/2017 AC + T (Taxol)
Log in to post a reply

Apr 24, 2019 12:08PM - edited Apr 24, 2019 02:40PM by rmgrmg

I agree demand to have your bulge reassessed by your PS or at least your Internist. Good luck And yes physicl therapy may improe the bulge and weakness too if you had that.


Racheal
Log in to post a reply

Apr 24, 2019 03:11PM Dlpaquette wrote:

Hi Mavericksmom, I did have am awful time with radiation burns but my breasts have healed well. My abdomen on the other hand has not. I have 6 openings and some of them are tracking from one to the other. I am 6 weeks out and it continues to get worse, I will be out of FMLA time on May 2nd as I had surgery in September that didn't go well. I am getting discouraged also and only half as fat out as you are. I do have a wound care nurse who is not happy with how it looks, she is supposed to call the doctor today to discuss. I feel pretty crappy right now but don't even know what is causing all the pain, I just feel like all of my insides ache, I am fever free so not likely infection.

I hope you start to heal soon, I can't believe your PS won't even consider wound care. Maybe your PCP could advocate for you to get into a wound care clinic.

Dx 12/12/2017, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 1/23/2018 Mastectomy: Left, Right
Log in to post a reply

Apr 25, 2019 03:18AM Lanne2389 wrote:

Mavericksmom, see if your hospital practices hyperbaric medicine for wounds. I've read on other boards that the treatment can be v v successful in healing open wounds like yours. Here is a link describing the treatment (basically you spend several hours in a special room pumped with pure oxygen).

https://oregon.providence.org/our-services/p/providence-hyperbaric-medicine/

It's used frequently for folks with diabetes (and others) who experience wounds that won't heal, or to speed healing. Do a search for “hyperbaric” and see if some posts come up.

If I was you I'd make an appt with your PS and be clear it's with him or no one and put up a big loud fuss if he doesn't show. You deserve the BEST care directly from your Dr if you request it. Anything less is bullsh*t. Call the patient advocate if there is one. Good luck.

(This kind of thing infuriates me - my team is so available and responsive that it pains me to read that any of you aren't getting the same care and respect).

Lanne

Lanne Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/2/2017 AC + T (Taxol) Surgery 6/13/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/7/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/14/2017 Femara (letrozole) Surgery 7/16/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Apr 25, 2019 07:19AM Mncteach wrote:

I agree with Lanne2389.... Make an appointment and make sure they understand it is with the PS. I had some issues with wound healing (not due to radiation so it may be a different issue) and ended up having another (outpatient) surgery and healed very well after that. I have relatives who are diabetic who have done the hyperbaric chamber for wound healing too.

I too have a very receptive team. In fact when I went to see my breast surgeon for a follow up and she found out I was coming the next day to get drains out, she walked me over to PS office to see if they could do it then to save me a trip. It ended up with her and my PS himself taking them out right then. I have seen just about everyone in his office, NP, PA, students, etc.... but he was always available if I needed him. In fact when I was having issues with healing, my appointment was with the PA and she called him in to consult to make sure he agreed with her assessment (which at that point was to change how wounds were treated and follow up in a week). It was very comforting. I wish everyone could have such a professional and caring team

Dx 8/31/2018, IDC, Right, 1cm, Stage IB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/31/2019 AC + T (Taxol)
Log in to post a reply

Apr 25, 2019 07:28AM - edited Apr 25, 2019 08:01AM by OCDAmy

It's so interesting that some people have such problems with incision healing and others do not. I've had 4 breast surgeries including DIEP and I've never had any issues with healing. Does this happen because the surgeon didn't close the incision properly, are you moving and opening the incision or are there just people who do not heal well?

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant 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
Log in to post a reply

Apr 25, 2019 10:14AM Dlpaquette wrote:

Amy I know that radiated tissue is always at risk of healing issues, also some people also just heal better than others. I had breast healing issues due to the radiation, this is my 4th breast surgery and fortunately my breast healed well with this surgery, but it did not heal well with the others. This time my abdomen is not healing well and I cannot blame radiation for that. Really wish I could get mine on the mend as it just keeps getting worse.

Dx 12/12/2017, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 1/23/2018 Mastectomy: Left, Right
Log in to post a reply

Apr 25, 2019 12:46PM OCDAmy wrote:

I had radiation as well but most of my radiated skin was removed and replaced with my stomach. I feel bad for those of you that this is happening to.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant 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
Log in to post a reply

Apr 25, 2019 04:38PM Mavericksmom wrote:

OCDAmy, I wish I had your PS! I will have to see what happens when I see the PS next week.

Lane, thanks for the link and information! That will be my next step if things don’t go well at my appointment next week

Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)
Log in to post a reply

Apr 25, 2019 10:49PM Lanne2389 wrote:

I hope everyone it upping their vitamin c to promote and supporthealing!!

Lanne

Lanne Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/2/2017 AC + T (Taxol) Surgery 6/13/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/7/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/14/2017 Femara (letrozole) Surgery 7/16/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap

Page 68 of 72 (2,132 results)