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Topic: IBC lounge: roll call, support and just a good place to hang out

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Mar 31, 2016 06:23PM

PurpleMinion wrote:

Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:

I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.

IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.

I am taking a "board break" mid June 2016, I will be back but mentally exhausted right now. Peace be with all of you. Diagnosed at 46 triple negative IBC. Mets to skin, lungs, bones. Dx 6/29/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 7/21/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 10/22/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/4/2016 Dx 5/6/2016, Stage IV, metastasized to bone Chemotherapy 5/9/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx Stage IV, metastasized to lungs
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Aug 6, 2021 08:14PM sbelizabeth wrote:

Mamacure, contact your insurance provider directly and ask about aesthetic flat closure. This makes me SO MAD. I agree--they'll pay literally hundreds of thousands of dollars for reconstruction surgery, sometimes involving multiple trips to the operating room, but can't pay a plastic surgeon ONE TIME to give you a nice flat closure?

My mom had two mastectomies and with her 2nd, her scar was all lumpy and bumpy and weird. Medicare paid to fix it.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 6, 2021 08:38PM LW422 wrote:

Traveltext--no offense but I believe that since men start out with a flat chest the closure would be less of a challenge. If a woman has larger breasts there is a lot of skin to deal with, getting the "aesthetic flat" requires more surgical skill. The plastic surgeon doing my closure explained that because of the size of my breasts, he might need to make a longer incision under my arm in order to smooth things out and not leave a "dog ear", which is one of my main concerns. He wanted to make sure I knew upfront that I was not going to have a 4" scar where my boob used to be. (Although many women do; just not in my cards.)

Another concern with IBC patients is how much skin involvement there is, and if there will be enough healthy skin to close the wound. I have a relatively small area of skin involvement but some women have to have grafts, etc. As SBC said, if insurance will pay big bucks for implants, why not pay for the aesthetic flat closure for other BC patients. That just doesn't make sense.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 6, 2021 09:01PM Traveltext wrote:

LW. I started out with a flat chest now I have a concave hole where my left breast was. My surgery followed chemo since I was inoperable on diagnosis. I think men deserve recon too, but it’s not considered important.

I certainly understand the importance of breasts to women, but I’ve read so many stories of recon gone wrong over the years that I’m not surprised at the flat and fabulous movement.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Aug 6, 2021 10:09PM LW422 wrote:

TT--I totally agree that men should have access to every reconstructive option that women have. The point I was trying to make is that women's mastectomies have a lot more tissue to deal with so I don't believe consulting a surgeon who does male surgeries would necessarily be a good choice. You previously suggested seeing a surgeon who does male mastectomies and I don't know that that would be a good solution for a woman.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 6, 2021 10:40PM Traveltext wrote:

LE. Sorry, that was a joke. You’d be lucky to find a BS who has done a guy. That said, you need to get your BS to give you a thorough briefing on what he thinks he can do. Too many people wake up and go WTF.



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Aug 6, 2021 11:40PM - edited Aug 6, 2021 11:40PM by LW422

Oh, I guess I missed the joke; sorry.

Yes, I met with my surgeon and plastic surgeon on Wednesday. I have a good understanding of what they plan to do. I'm fairly certain I'm going to wake up and go "WTF" regardless.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 7, 2021 10:19AM sbelizabeth wrote:

TT I don't know how things stand with this down under, but here in the US, I would like to see what would happen if a man with breast cancer was denied reconstruction because he's a man. I bet we'd have a firestorm you'd be able to see from where you are.

In my breast cancer travels I met a man who had BC and was BRCA positive. His adult son had prophylactic mastectomies with immediate reconstruction. I saw a photo--his chest looked very natural.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 7, 2021 08:37PM Traveltext wrote:

SBE. I think it’s available but not offered as a matter of course here. With your friend’s son, the result would have looked okay since there was likely nothing removed but the small amount of breast tissue a man has. My surgeon went wide and deep and not sure I’d have wanted a graft for recon.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Aug 7, 2021 09:10PM sbelizabeth wrote:

Good point, TT. With prophylactic mx and immediate recon, it's just the breast tissue they're after, not a wide excision of skin. Still, if women are offered tissue expanders and implants, it should be an option for men.

I have a number of big scars--shoulder reconstruction after a mountain bike fall, two new knees--and they don't bother me even a little. But after the umx, the scar was lumpy, bumpy, wrinkled, ugly...I absolutely hated it. The disfiguration reminded me many times a day of what I'd lost and the process I had to go through to lose it.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 7, 2021 09:42PM Traveltext wrote:

SBE. I totally get your horror at the Mx result. The difference between before and after for a woman must be horrendous, an aesthetic nightmare. I’m so thankful to be a guy with this disease in this part of the treatment.These days in pretty relaxed on the beach without a top. I’ve told this story before: when a young grandkid asked what happened, I said I was in a sword fight. Cool, he said.



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Aug 7, 2021 11:07PM mara51506 wrote:

TT, love the sword fight explanation.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Aug 23, 2021 09:57AM - edited Aug 23, 2021 09:57AM by cynmaggie

Good morning. Diagnosis Stage 3 IBC, invasive ductile carcinoma, triple negative, metastatic to lymph nodes.

Age - nearly 72

Chemotherapy - 16 infusions finished August 17th.

Pending - double mastectomy and radiation

I'd love to hear from anyone who has been through this and is living in recovery

So many in my community do not understand IBC and can't relate.

Dx 3/15/2021, IBC, Left, Stage IIIC, ER-/PR-, HER2- Chemotherapy 4/4/2021 AC + T (Taxol) Surgery 9/20/2021 Mastectomy
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Aug 23, 2021 10:06AM sbelizabeth wrote:

Welcome, Cynmaggie. You're right in the thick of it now, with chemo behind you and surgery/radiation left to go. There are a lot of us here who have experienced the same thing and have lived many happy years since. Please feel free to come here anytime. You'll be looking at breast cancer treatment in your rear view mirror before you know it.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 23, 2021 10:12AM - edited Aug 23, 2021 10:13AM by cynmaggie

Thank you SB Elizabeth! Its wonderful to hear! I am so very tired! Just hoping to regain some strength and energy before surgery. (And some hair :) too!

The chemotherapy was successful, Praise GOD! No more cancer in my lymph nodes and the 22mm mass is now a 'residual 9x6mm spot'. The hot, red swelling is gone! Just waiting for a surgery date now.

Dx 3/15/2021, IBC, Left, Stage IIIC, ER-/PR-, HER2- Chemotherapy 4/4/2021 AC + T (Taxol) Surgery 9/20/2021 Mastectomy
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Aug 23, 2021 04:05PM mara51506 wrote:

Welcome cynmaggie and glad to hear chemo did its job. Keep us posted about surgery and any questions you might have.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Aug 26, 2021 11:29AM cynmaggie wrote:

Thank you! I have a double mastectomy scheduled tentatively for Sept 21 or 22. I will not have reconstruction. What do I need to take to the hospital. Will I be told what to wear after surgery? so many questions

Dx 3/15/2021, IBC, Left, Stage IIIC, ER-/PR-, HER2- Chemotherapy 4/4/2021 AC + T (Taxol) Surgery 9/20/2021 Mastectomy
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Aug 26, 2021 12:39PM - edited Aug 26, 2021 12:44PM by LW422

Hello Maggie and welcome, though I'm sorry you have to be here. I just had surgery on Monday (single mastectomy and lymphovenous bypass) and I feel pretty good, considering. Do you have someone to help you when you get home from surgery? My husband has been helping me strip my drains and with a shower yesterday. I'm not sure I could manage all this by myself.

When I was preparing for surgery, I bought several front-closure robes and tops. Unfortunately they mostly all have ZIPPERS and are not "drain friendly" at all. You need something very loose fitting if you will wear the drains on the inside of your clothes, or something with buttons or snaps if you wear the drains on the outside. My husband had bought me a "nail apron" from Home Depot which works very well since it ties around my waist and has pockets that the drain bulbs fit into. (It was about 97 cents so not a big investment.)

I'm a bit surprised that you will have a double mastectomy; my surgeon was not agreeable to removing my healthy breast at this point because she wanted to make sure I had the least opportunity for any issues with recovery. Honestly after having a single mastectomy and dealing with the drains and wound care, I'm glad I only had one removed!

As far as what to take to the hospital, just a roomy robe for the trip home and maybe a toothbrush and toothpaste. I wore a hospital gown the entire time and didn't feel like getting dressed when I was released, so I just wore my robe for the wheelchair ride to my car. You will be given plenty of instructions on how to care for yourself in recovery, and probably a mastectomy bra or camisole.

My best wishes to you. Ask all the questions you need to; we will try to help.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 26, 2021 04:54PM mara51506 wrote:

I echo everything LW422 said above as far as what to wear. I also found for myself, the most comfortable thing to wear when it came to the drain was a sports type bra with enough room that I could tuck the bulb up there. I still drained as I was supposed to but because it was held up in the bra, I did not find the stitches uncomfortable because of any pulling of the drain which was an issue initially.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Aug 26, 2021 07:41PM cynmaggie wrote:

Thanks everyone! Looks like surgery will be either Sept 21 or 22 - final date and time tbd. I appreciate your support

Dx 3/15/2021, IBC, Left, Stage IIIC, ER-/PR-, HER2- Chemotherapy 4/4/2021 AC + T (Taxol) Surgery 9/20/2021 Mastectomy
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Aug 31, 2021 03:19PM - edited Aug 31, 2021 05:07PM by LW422

I got the BEST possible news from my SO today... pathological complete response to chemo!!!! No trace of cancer left in my breast tissue or the 32 lymph nodes she removed!! OMG, I am so psyched and relieved.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 31, 2021 03:50PM pchyen wrote:

Congrats LW422 on pCR, that is great news!!!!

Peter, Nicole’s Husband. Nicole was diagnosed with IDC April 5, 2021. Dx 4/2021, IDC/Paget's, Right, ER-/PR-, HER2+ (IHC) Chemotherapy 4/28/2021 AC + T (Taxol) Targeted Therapy 6/23/2021 Perjeta (pertuzumab) Targeted Therapy 6/24/2021 Herceptin (trastuzumab) Surgery 9/1/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left
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Aug 31, 2021 05:10PM LW422 wrote:

Thanks so much, Peter!! I'm hoping for the same news for Nicole!

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 31, 2021 06:42PM mara51506 wrote:

Congratulations LW422, glad to hear the good news!


2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Aug 31, 2021 07:56PM LW422 wrote:

Thanks Mara!

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 31, 2021 08:55PM mamacure wrote:

congratulations LW422!!! That is the best news!! I am so happy to hear this. Great job!!!!! {{{{hugs}}}}} & high five!

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Aug 31, 2021 09:05PM blue22 wrote:

Congratulations LW! That is such great news!

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Aug 31, 2021 09:32PM LW422 wrote:

Thanks Mamacure and Blue!! I'm very happy about the pCR, and also my genetic testing came back negative for all tested. So I don't have to worry about passing this crap down!

Now if I can only get rid of these dang drains!!!

Hope both of you are doing well.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Sep 1, 2021 09:25AM cynmaggie wrote:

That is WONDERFUL!!! So happy for you!

Dx 3/15/2021, IBC, Left, Stage IIIC, ER-/PR-, HER2- Chemotherapy 4/4/2021 AC + T (Taxol) Surgery 9/20/2021 Mastectomy
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Sep 1, 2021 07:03PM sbelizabeth wrote:

LW422, this is abso-friggin-lutely outstanding news. You must have been floating around on a joyful cloud all day when you got THAT phone call.

Drains are the cocklebur under the already-uncomfortable saddle of breast surgery. I'm sorry yours are still in residence. Although...I fast-talked my plastic surgeon into pulling one that was barely over the 24-hr limit, and I developed a persistent, sloshy seroma. I wished I had just lived with the thing until my body was less juicy.

Here's to great path reports and drains in the trash can. Congrats. SB

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIB, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Sep 1, 2021 07:09PM blue22 wrote:

LW - drains will be gone soon and only a distant memory! When you bring it up, I remember how much I didn't care for them, but honestly it is only when people bring up drains that I even remember them.

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)

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