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

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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Nov 19, 2022 04:06PM sbelizabeth wrote:

Thanks! Lw422, did they biopsy your small IDC tumor and find cancer?

IBC, from what I understand, is always either invasive ductal (most of the time) or some other invasive subtype, such as lobular (rarely) on microscopic examination. It's these cancer cells within the dermal lymphatic channels of the breast that makes it IBC. You can't see IBC in a microscope and say, "that's IBC" because it's a clinical diagnosis, not a pathological finding. Thus, I would think that if/when mets are discovered, the pathology of the metastatic tissue would be either ductal carcinoma or some other subtype that's identifiable by microscope.

I know that mammograms, ultrasounds, MRIs can identify findings that are highly suspicious for IBC, but without a solid biopsy that's positive for cancer somewhere within the breast or the skin of the breast, I don't know how they can absolutely diagnose IBC. You sure wouldn't want to treat a stubborn mastitis or some kind of raging dermatitis with chemo, mastectomy, rads, etc. But you don't want to miss an IBC diagnosis either!

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; 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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Nov 19, 2022 05:14PM traveltext wrote:

Diagnosis of IBC is an important topic and a perennial one, so it's good to hear the first-hand experiences of those diagnosed and to go back to the science, as we know it, of IBC.The lump/no lump nature is what that often confuses patients when this necessarily clinical diagnosis determines treatment. When you think of it, the dermal invasion, which is not proven to involve cancer unless there is a punch biopsy (rarely performed to my knowledge) and the inflammation could be an infection from the biopsy needle! Or something else if you've not had the biopsy.

I had a lump for months before I could persuade my GP to prescribe an ultrasound. When I finally presented with a red, inflamed left breast and inverted nipple, I was sent to the breast surgeon, she quickly referred me to the oncologist to began neo-adjuvant treatment. Only when the lump decreased in size and the inflammation subsided would the surgeon tackle the Mx. Stage 3B was the diagnosis because two nodes were affected.

With neo-adjuvant treatment you don't get to find out how successful the chemo is until the Mx pathology. In my case the there was no pCR. Hence off for 33 doses of radiation.

For the newbies here, us long-temers get your concerns. That we're still posting should give you encouragement, regardless of where you are in your treatment. A picture is worth a thousand words, so here you go.



NED breast and prostate cancer. 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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Nov 19, 2022 08:55PM lw422 wrote:

SBE, Yes... they initially biopsied the small tumor (which the biopsy identified as IDC) and also a single swollen node in my axilla. I'll be the first to admit that I still have a lot of questions about IBC, but I avoid researching because it scares me all over again. There's too much sensationalism "WORST BREAST CANCER POSSIBLE!" "MOST AGGRESSIVE!!" "HIGHEST MORTALITY RATES!!!" Just ugh. I want the information, not the terror.

TT--I did have pCR after chemo and from surgical pathology, but I was whisked to radiation as soon as I healed enough after the mastectomy. I hated it all, but I'm glad I had every possible treatment to keep it from recurring, especially since I'm TN.



Dx IBC, ER-/PR+, HER2-
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Nov 22, 2022 12:20PM lw422 wrote:

Just popping in to say that I hope all the IBCers are doing well and thriving. For those of you in the USA, I hope you have a wonderful Thanksgiving. I suppose we all have something to be thankful for. Take care of yourselves and let us hear from you.

Dx IBC, ER-/PR+, HER2-
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Nov 23, 2022 10:40AM mara51506 wrote:

Happy Thanksgiving to our US IBC family here as well.

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; Mastectomy; 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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