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Topic: Not Where I Wanted To Be, But Here I Am

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: Jan 15, 2021 02:13PM - edited Jan 15, 2021 02:15PM by LW422

LW422 wrote:

I posted a thread in the "Just Diagnosed" section, but I feel it is time to move to the IBC forum. :(

I'm sure all of you diagnosed with IBC have had the same feelings I'm experiencing today. So far I'm diagnosed with IDC with a lymph node involvement, but have been assigned to the IBC "team" at MD Anderson in Houston. To say that I am filled with dread and anxiety is putting it mildly.

I noticed a pink "bruise" on top of my right breast before Christmas and didn't think much about it... until it didn't change color or go away after a week or so and the breast was slightly swollen. Of course I began googling, scared myself out of my wits, and was able to see my PCP on December 28. She ordered a diagnostic mammo and sonogram so I decided to schedule those at MD Anderson's Undiagnosed Breast Clinic since I live 25 miles from their facility.

Last Tuesday (has it only been 3 days??) I was given a diagnostic mammogram, sonogram, needle biopsy of lymph node, and core biopsy of a breast lump with those marker clips. Then the world turned on it's side as the first result was cancer in the lymph node. Next result; Invasive ductile carcinoma in my breast. Scariest of all was the immediate assignment to the Inflammatory Breast Cancer center, even before the MRI and skin punch biopsy.

My MRI and skin punch biopsy are scheduled for next Tuesday, January 19. Then I meet with my "team" in the IBC clinic at MD Anderson's Mays Breast Clinic on Wednesday, the 20th. So in less than a month everything in my life is different.

A month ago I was worrying about Christmas and Covid-19. Today my world is forever changed. If you have any words of comfort, please share them. For all you "Walking this Path No One Wanted to Walk" with IBC, please share your stories. How did you discover you had IBC? What stage are you in your treatment?

I want to know what I'm facing, and how I will ever get through this. Thanks for reading.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Posts 31 - 45 (45 total)

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Jan 24, 2021 03:53PM Astrid wrote:

Hi MrsT41,

As LW writes, Do see your doctor as soon as possible. No point in waiting and worrying. Ask for a referral to a specialist.

Astrid.

"You cannot step into the same river twice, for other waters are continually flowing on." Heraclitus Dx 6/2002, IDC, Both breasts, 1cm, Stage IIB, Grade 2, 1/7 nodes, ER+/PR+, HER2- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Jan 24, 2021 04:45PM LW422 wrote:

MrsT--don't let them "dismiss" you! You need to have that checked if only for your peace of mind. I wish I had some magic words to help rid you of anxiety; I know how scared you must be.

At first I had no other symptom, but after about 2 weeks my nipple on that side got VERY sensitive. I couldn't stand for anything to touch it and even had to wear a bra to bed so that my nightgown didn't rub against it. I stared in the mirror comparing my breasts at least 10 times a day, trying to see any difference. When I went in to see my doctor, she said the breast was slightly swollen but I just thought that one had always been slightly larger.

The main thing for you to know is that EVERYONE has different symptoms. Some have a single symptom and some have them all. Just get in quickly and get it checked. My thoughts are with you so please let us know what you find out.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 24, 2021 08:01PM MinusTwo wrote:

MrsT - you should probably post in "not diagnosed but worried".

That said, if the patch was on your thigh or your stomach, you would not think breast cancer. Since it's a skin issue, I'd suggest an appointment with your dermatologist. That's much more likely than IBC. Hopefully since you had melanoma skin cancer in the past, you see your derm doc regularly.

That and STAY OFF google. That is really not reliable & can cause major panic.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 24, 2021 10:26PM Austriangirl wrote:

Hi there, sorry to hear about your world being turned upside down. You are not alone.

I am just a month ahead of you. Was diagnosed at MDAnderson in Phoenix at the beginning of Nov, after a 2 month delay with local Gyn and antibiotics - common misdiagnosis.

Hang in there. First things first, you got the right diagnosis and MDA will come up with the most appropriate treatment plan, so in one way you can relax a little bit. 

You asked what to expect, in terms of treatment I can only share the protocol they use with me:

My treatment protocol for IBS so far is 4 cycles (every other week) of AC chemo followed by Taxol for 12 cycles (weekly). Radical modified mastectomy of affected breast comes next, followed by radiation. 

I have found myself often overwhelmed by all the information and the speed of action by the MDs.

Slowly trying to figure things out for myself. My advise - Give yourself time to adjust. 

I often do not recognize this body who now has to deal with so many things formerly unknown- like chemo brain, treatment is rough and side effects are strong. At least for me. Ended up in emergency room twice with neutropenic fever and sepsis, was in hospital for 5 days just a week ago. I wish doctors would educate patients more about the harsh reality of chemo. I feel they understate the side effects and patients find out the hard way.

I do not want to scare you but maybe it helps you to be prepared by hearing what happened in my case.

Be well.



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Jan 24, 2021 10:36PM LW422 wrote:

Hello AustrianGirl and thank you for posting. I'm so sorry for your diagnosis and I hope your treatment is successful. I appreciate you sharing your experience thus far. I'm dreading the treatment but unfortunately my life is suddenly not my own and all this is beyond my control. I know you have felt all the feelings I have, and it's a terrible ordeal but hopefully we will both come out of it and get back to our "new normal".

My MO stated that I would be having Taxol and AC, but I thought I understood that I will start with 12 weeks of Taxol (once a week), then 12 weeks of AC (once every 3 weeks). I suppose many factors go into the plan of treatment. Thanks again for sharing, and my very best wishes to you during this terrible time. Keep in touch, I want to know how things progress for you.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 26, 2021 08:25PM - edited Jan 26, 2021 08:25PM by LW422

I received the pathology report for my 2 skin punch biopsies this evening, and much to my surprise, there is "no evidence of carcinoma" in my skin on the cancerous breast. Is it possible to still have a clinical diagnosis of IBC without supporting pathology? I will be very interested in my MO's comments about this on Tuesday. Here's the info from My Chart...

DiagnosisA: Breast, right upper outer, skin punch:

Mild superficial perivascular lymphocytic infiltrate

See comment.

B: Breast, right upper inner, skin punch:

Mild superficial perivascular lymphocytic infiltrate

See comment.


CommentA, B: Immunohistochemical studies for pancytokeratin performed on both specimens fail to reveal carcinoma. PAS special stains are negative for fungal organisms. Multiple deeper sections were examined. Clinical-pathologic correlation is necessary.
Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 26, 2021 09:01PM - edited Jan 26, 2021 09:08PM by Astrid

whoah! That is an interesting development LW. I hope someone knowledgable can weigh in here. Is it all possible they were too quick to jump to IBC conclusion, or is it often the case that it may not show up on skin punch biopsy.

I wonder what other key indicators they used. Maybe the swelling and pink bruise or how the lumps looked.

"You cannot step into the same river twice, for other waters are continually flowing on." Heraclitus Dx 6/2002, IDC, Both breasts, 1cm, Stage IIB, Grade 2, 1/7 nodes, ER+/PR+, HER2- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Jan 26, 2021 09:37PM LW422 wrote:

Beats me, Astrid. I know that IBC is a clinical diagnosis, so I suppose it's based on the oncologists' observation of symptoms. I don't know why I had the idea that the skin punch biopsy was "the" official determination but apparently I'm mistaken. I suppose I should be happy that they found no carcinoma in the skin of my breast, but in the grand scheme of things I still have cancer.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 27, 2021 05:54PM sbelizabeth wrote:

LW422, they found no carcinoma in the small biopsy specimen of the skin of your breast. It could be that the biopsy site just wasn't the correct spot to find it. This happens occasionally.

Still, I would ask my oncologist or surgeon to explain it. Are they basing the diagnosis of IBC on clinical manifestations?

The treatment protocols for IBC and locally advanced invasive ductal carcinoma are very similar--chemo, followed by mastectomy, followed by radiation. Your team probably wouldn't alter your treatment based on a negative skin punch biopsy anyway. But I would want to know what they had to say about it.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, 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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Jan 27, 2021 06:31PM LW422 wrote:

SBElizabeth--I am quite curious about what the oncologist will say about the punch biopsies. They took 2 specimens of fairly good size... at least as wide as a BB and about as deep. Both specimens were from the red and "thickened" areas of skin so logically if there is cancer in the skin, that's where it would be. I'm sure it won't change my diagnosis or treatment, but it is curious.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Feb 19, 2021 12:41PM DeniseML wrote:

LW422: Your post is hitting home ! Do I ever know how you feel. Diagnosed in 8/2020 with IDC, IBC stage IIIC. I am half way through treatment ! Keep Heart ! NO cancer found in nodes or breast tissue removed during Surgery 6 weeks ago! YES, I am getting triple- modal treatment . Throwing the big guns at it! 30 Radiation treatments now along with immunotherapy ( 12 more treatments) to complete a year of therapy. HER2+ / ER & PR negative though. The goal is CURE!

The worst part for me was knowing I probably have inflammatory BC even before biopsy, having gone through training as RN many years ago. The delays I encountered sent me to the panic stage quickly. Once treatment started I could take a deep breath and focus on beating this. No, its not easy, but, it is doable! I am keeping you in my prayers!

Dx 8/3/2020, IDC/IBC, Left, 3cm, Stage IIIC, Grade 3, 0/7 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 8/24/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/14/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy External: Lymph nodes, Chest wall Immunotherapy 2/23/2021
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Feb 19, 2021 01:35PM LW422 wrote:

Hello Denise; it's nice to meet you but not under these circumstances! I'm glad to hear you are doing well with treatment; I'm barely started with Taxol chemo and already have a week's delay due to the Houston weather. I've had one chemo and it wasn't horrible, thankfully. Not sure how skipping a week might affect the treatment but it can't be helped.

My MO hasn't mentioned immunotherapy as part of my treatment; not sure how that is determined.

What part of GA are you from? I'm originally from south GA, near Valdosta. I wish you continued success in treatment; keep in touch and let me know how it's going.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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3 hours ago LW422 wrote:

Updating my progress to say that my MO called a couple of days ago and reassured me that any effect of missing a week's chemo would be "negligible." Missing a week was mixed emotions; wanting to get on with knocking back the cancer while enjoying a week off!

I'm having Taxol #2 tomorrow and noticed a lot of hair shedding in the shower tonight. I haven't noticed much change in my IBC breast. It looks a bit beat up from all the scans, biopsies, etc. and still slightly swollen, but I don't see any progression of the pink area or thickened skin.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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An hour ago blue22 wrote:

Hi LW,

Good luck tomorrow. I let my hair fall out initially too, but at some point it got pretty messy and I cut it to a bob, and then completely off. Next time I am going to have fun with it before it falls out.

Take Care,

Blue

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left 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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49 minutes ago LW422 wrote:

Hi there, Blue. So nice to "see" you. I'm so torn on the hair; for some reason I just can't stand the idea of baldness and looking like cancer person.

Hope you're doing well. I need to get to bed so I can rest up for the exciting day tomorrow! Thanks for the good wishes.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)

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