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All TopicsForum: IBC (Inflammatory Breast Cancer) → Topic: IBC lounge: roll call, support and just a good place to hang out

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 7/22/2015 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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Posts 661 - 690 (808 total)

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Mar 25, 2017 04:09AM - edited Mar 25, 2017 04:27AM by Traveltext

Thanks Margarita, that's a very illuminating and informative post. Fancy the suspected progression being inflammation. You really do need to double check every step with these treatments. Back to the Kadcyla and now with no metabolic activity are very positive developments. Congrats.

Sparkles, welcome to this thread. Your varied emotions at this early stage are natural, so you need not feel this to be unusual. When you have your full diagnosis, you might like to fill in your profile with the details so people here can give advice and/or make suggestions based on their similar experiences.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Mar 29, 2017 12:45AM - edited Mar 29, 2017 12:46AM by Meadow

Some of you may remember, I have been battling a severe infection in one my implants, and had it removed in January. I had attempted a revision surgery to my reconstruction to repair some damage to my implant from radiation. It was a failure, the area became severely infected and I have been seeing an Infectious Disease Specialist. On Friday I got the all clear for surgery and had it today, Tuesday. My PS was able to close my open wound that I have been packing since February, and smooth out some rough puckering from too much skin when the implant was removed. Hoping for good results. I have been a bit down the past few days, not really familiar territory for me. I am going to stay flat on that side, and I am ok with it. Hoping for the end of this season of infection, on with Spring. Hugs to you all.

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Mar 29, 2017 01:55AM Traveltext wrote:

That's good news Meadow. I hope the surgery heals well and that you will now not have to worry about infections any more.

From what I read your situation is pretty common. I understand there's no real comparison, but when people ask me if I'm upset men aren't offered recon. surgery, I say definitely not.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Mar 29, 2017 04:52AM Meadow wrote:

Thank you TT, and I did think of you when getting comfy with no recon.I thought, 'TT has no recon, he doesn't seem to mind!' Lol

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Mar 29, 2017 05:15AM Traveltext wrote:

Comfy? Hell yes, and proud. The first thing bc guys do when meeting is to lift shirts and compare scars!


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Mar 29, 2017 07:09AM mara51506 wrote:

Glad to hear that you are not bothered by going flat Meadow after all that awful trouble you had. There are good prosthetics, knitted knockers if you need to fill out clothes. I go flat all the time. Had my right breast removed myself couple of years ago so I too am a uniboober. No one gives me a second look and I don't even bother with loose clothes. Only thing my BS left me with was some extra skin since I originally was supposed to have recon. That did not happen since I did not fully get out of treatment AND went Stage IV. After all the stories I have heard here, I am not interested in undertaking recon.

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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Mar 29, 2017 11:14AM MoreShoes wrote:

Oh Meadow, you've been going through a lot. Hopefully the operation went well, you're happy with the results and NO infections. I've DMX but go flat only in the house. Emotionally, I still have major problem with it. There's no chance on recon in my case.

Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Apr 15, 2017 02:56AM minimoocher wrote:

To all in the Lounge, wishing you all the best for Easter 2017.

Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/8/2016 Taxotere (docetaxel) Targeted Therapy 3/8/2016 Perjeta (pertuzumab) Targeted Therapy 3/8/2016 Herceptin (trastuzumab) Surgery 7/20/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/2/2016 Herceptin (trastuzumab) Targeted Therapy 8/2/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/20/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Apr 15, 2017 04:15AM Traveltext wrote:

Thanks Mini. Best wishes to all in the Lounge.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Apr 15, 2017 12:28PM jcpriest0469n wrote:

Hello to all and Happy Easter. I finally came down with a bad cold. It chased me all winter. Glad it's finally over.

Dx 12/9/2013, DCIS/IBC, Left, 3cm, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 12/17/2013 AC + T (Taxol) Surgery 3/31/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/3/2014 3DCRT: Breast, Lymph nodes
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Apr 16, 2017 03:50PM - edited Apr 17, 2017 08:27PM by Cravingicecream

Diagnosed in January,just got to the boards.It is nice to discover this group!

Dx 1/3/2017, IBC, 6cm+, Stage IIIC, ER+/PR-, HER2+ (FISH) Chemotherapy 1/17/2017 Taxol (paclitaxel) Targeted Therapy 1/17/2017 Herceptin (trastuzumab) Targeted Therapy 1/17/2017 Perjeta (pertuzumab)
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Apr 16, 2017 04:30PM Moderators wrote:

Welcome Cravingicecream,

We're glad to see you found us.

Sending you big hugs from us here

Heart

The Mods.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 17, 2017 07:22PM - edited Apr 17, 2017 07:28PM by Meadow

Craving, welcome! We are so glad to have you join us. Thanks for the pep talks, Mara, TT, Moreshoes.

Hugs to all and thanks for the Easter blessings and good wishes, same to you

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Apr 17, 2017 07:50PM Traveltext wrote:

Welcome Craving. You find lots of support and help here as you go through your treatments. Do keep our profile up to date and we'll know where you're up to at any time.

Meadow, I can see you're over three years post surgery and cruising towards four years post diagnosis. Good on you. I know you're active on the TN boards, but it's great to have you check in here too.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Apr 17, 2017 07:55PM Meadow wrote:

Thanks TT, and thanks for noticing my survivorship...I am very very happy about those big years under my belt. My IBC peeps are my family!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Apr 17, 2017 08:07PM Yogibeach wrote:

Hello I'm a newbie, just diagnosed with IBC March 15, 2017, started Taxol on March 28, 2 doses so far plus Neupogen, the WBC booster, not sure of the spelling. Glad to have found this, I do feel isolated, having IBC. I'm a bit worried about lymphedema as I have axililary lymph node involvement and I want to try to prevent it so am looking for ideas about prevention, exercise etc... Also does anyone swim in public pools while having chemo?

Cheers to all.

Take care of you first! Dx 3/15/2017, IBC, Right, 6cm+, Stage IIIB, Grade 3, ER+/PR-, HER2- Chemotherapy 3/27/2017 AC + T (Taxol)
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Apr 17, 2017 08:28PM Traveltext wrote:

Welcome Yogibeach, you've clicked the right button to land here, so feel isolated no more. In your profile you can record your diagnosis and treatments and this helps us keep track of where you're at.

Most of us here, if not all, have had our lymph nodes removed, so we understand your concerns about lymphedema when surgery is over. I haven't had it. No harm in planning ahead and there's a huge set of threads HERE if you want to research more. Certainly exercise is recommended, but mainly you need to keep your arm free of infections. Speaking of which, I'd stay right out of public pools since you need to ensure you don't get an infection during chemo or you'll get a free trip to hospital where they treat you intravenously with antibiotics. I had one of these trips after a dental appointment landed me with an infection.Also avoid people with viruses, since it really is important to stay healthy during chemo. The drug side effects are enough without handing extra health issues.

Anyway, good luck with the chemo and keep us posted.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Apr 17, 2017 08:33PM Yogibeach wrote:

Thanks, yes, I figured out the diagnosis settings after I posted. Glad to be here.

Take care of you first! Dx 3/15/2017, IBC, Right, 6cm+, Stage IIIB, Grade 3, ER+/PR-, HER2- Chemotherapy 3/27/2017 AC + T (Taxol)
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Apr 20, 2017 10:53PM Liz06 wrote:

Hi just checking in! Diagnosed IBC in June of 2015 - right around my 38th Birthday. Did the chemo-surgery-radiation trio and now I'm continuing with Aromasin and Herceptin/Perjeta infusions. I haven't been on these boards much but it is nice to hear from others going through this.

Dx 6/26/2015, IBC, Left, Stage IV, Grade 3, ER+/PR-, HER2+ (FISH) Surgery 12/15/2015 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left Chemotherapy AC Chemotherapy Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Aromasin (exemestane) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Perjeta (pertuzumab)
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Apr 21, 2017 04:55AM Traveltext wrote:

Welcome to the Lounge, Liz. We have some Stage IV people here and your treatment experiences will be interesting reading for them as well as the rest of us.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Apr 21, 2017 12:36PM jcpriest0469n wrote:

Welcome to cravingicecfeam and yogabeach, This is a great place to connect with others going though the same. Hope to here more from Liz. Have a good day.

Dx 12/9/2013, DCIS/IBC, Left, 3cm, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 12/17/2013 AC + T (Taxol) Surgery 3/31/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/3/2014 3DCRT: Breast, Lymph nodes
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Apr 21, 2017 04:25PM MoreShoes wrote:

Welcome to cravingicecream and yogibeach. Sorry you're here. Yogibeach, I do have lymphedema for 9 years now. It is under control. The excercises are very important. Self lymph drainage massage is also helpful.

Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-
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Apr 21, 2017 10:23PM mara51506 wrote:

Welcome Liz, my treatment is Herceptin/Perjeta as well. Glad to meet you.


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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Apr 25, 2017 06:25AM minimoocher wrote:

Hi everyone and welcome to all the newbies. This is a great resource for us IBC people.

Had a CT scan before Easter and got results today. Vital organs all clear. A few enlarged lymph which are on a wait and watch. My skin wound which is a fungated tumour essentially is responding to the Kadcyla. I am having cycle 11 today. So static or stable for the moment. What a relief!

Keep posting everyone. We are all so individual and treatments these days are tailored to fit each case. I perplexed my oncologist when my recurrence was in the skin so soon after mastectomy.

Going to my first lymphoedema clinic appointment tomorrow to see what can be done to decrease arm swelling. Again, my case is challenging as underarm rash, involvement means that a sleeve would be tricky but I'll see what they recommend.

Best wishes,

Mini


Dx 2/25/2016, IBC, Right, Stage IIIC, 15/20 nodes, ER-/PR-, HER2+ Chemotherapy 3/8/2016 Taxotere (docetaxel) Targeted Therapy 3/8/2016 Perjeta (pertuzumab) Targeted Therapy 3/8/2016 Herceptin (trastuzumab) Surgery 7/20/2016 Lymph node removal: Right; Mastectomy: Right Targeted Therapy 8/2/2016 Herceptin (trastuzumab) Targeted Therapy 8/2/2016 Perjeta (pertuzumab) Dx 8/30/2016, IBC, Right, Stage IV, metastasized to other, 15/20 nodes, ER-/PR-, HER2+ Targeted Therapy 9/20/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Apr 25, 2017 11:27AM Valstim52 wrote:

Hello to all the newbies. This is a great source of encouragement and knowledge.

Hi Minimoocher. Glad the organs are clear. Sending gentle hugs your way. Hi to traveltext, meadow and any i've missed. I too go for lymphedema therapy. Less now that my insurance covered a machine that does the massaging. It makes a big difference. It covers my torso, stomach and left arm. Then gently massages for 68 minutes. My swelling is non existent.

I only have a few mild se's from my stroke last august. Trying to get this dx in my rearview mirror.

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/11/2016 AC + T (Taxol) Surgery 5/24/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Apr 25, 2017 12:13PM jcpriest0469n wrote:

  • That's great news valstim. Don't have lymphedema,but my neuropathy in feet is back. It's been fine for 6 months or so. Very bazaar.Glad your sounding so good.
Dx 12/9/2013, DCIS/IBC, Left, 3cm, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 12/17/2013 AC + T (Taxol) Surgery 3/31/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/3/2014 3DCRT: Breast, Lymph nodes
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Apr 25, 2017 05:42PM Traveltext wrote:

Mini, glad to hear you are static and stable. The skin recurrence was a real curve ball on top of all your other treatment. I hope the lymphedema clinic can offer you help and be sure to learn the proper massage techniques. MoreShoes is the expert on this - in fact, nine years of lymphedema would make her a world expert!

Valstim, what's this machine that does the massaging? Never heard of such a contraption. Can you post a link to the one you have? Glad your stroke se's have settled. jcpriest, neuropathy can come and go. Let's hope you have it going more than coming, since it is a dreadful condition. Cheers to all the other Loungers here.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Apr 25, 2017 09:10PM Meadow wrote:

Mini, very good news! Update when you can about the LE

Val, that machine sounds wonderful. and it is really effective too...wow!

Yes, as TT says, hello to all the Loungers

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Apr 27, 2017 08:27PM Traveltext wrote:

From the American Society of Breast Surgeons.

Contemporary Inflammatory Breast Cancer Therapy Yields Low Local/Regional Recurrence:

https://www.breastsurgeons.org/docs2017/press/Inflammatory%20Breast%20Cancer%20-%20ASBrS%202017.pdf

Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Apr 29, 2017 12:02PM MoreShoes wrote:

TT thank you very much for posting this link. I was feeling really low cause last year around this time I was preparing myself for DMX and one month of cruel hyperthermia rads. The article makes me feel that there's hope and I didn't do all these treatments for nothing.

Dx 4/9/2008, IDC, Left, 2/16 nodes, ER-/PR-, HER2- Dx 6/21/2012, IDC, Right, 0/1 nodes, ER-/PR-, HER2- Dx 10/30/2015, IBC, Left, ER-/PR-, HER2-

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