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Topic: The waiting game

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: Dec 2, 2017 05:00PM - edited Dec 2, 2017 06:16PM by Pharmgirl69

Pharmgirl69 wrote:

Hi all! I'm brand new here and i think ive read this entire forum over the last few days and finally decided to post.

November 17th I woke up to a very swollen, very red breast. I thought I slept on it or ran into something and it would go away. The next morning it was worse. Being an ER nurse, I texted my Medical Director pictures of my breast (classy, I know). She called me in an antibiotic. A week later I finished it with only slight improvement in redness, still swollen and now orange peel. I made an appt to see my primary on Tuesday who set up an ultrasound the next morning.

Things escalated so quickly when I got to the ultrasound appt. I went to mammo, then ultrasound, then to breast health nurse, then biopsy, then another mammo....results in 3-5 business days....bye!

My head was spinning. The breast health nurse called me the next day (this past Thursday, November 30) and I asked her to please tell me what direction we are going as I was too overwhelmed to hear anything. She told me the biopsy was Birad 5 highly suspicious of IBC. The "lesion" they biopsied was 2 cm.

I guess my question is: is 3-5 business days too long to wait for results? It feels like eternity especially with how aggessive IBC is now that I'm reading. It's been 2 weeks since the symptoms started. I already have a preemptive appt with a surgeon next Thursday set up by my primary which will be 3 weeks.

My second question is: I've started itching and started having very uncomfortable soreness in my breast and collarbone area. Is there anything that anyone has found that has helped? I'm taking motrin and ice doesnt seem to help. Like I said I'm an ER nurse and not really good at being the patient. Any helpful tips that anyone has done to ease this while you wait?

This waiting game is so frustrating. I'e never had anxiety but had to ask doctor yesterday for something for my nerves. I can't sleep. I can't eat. The clinical nurse in me and my emotional self are colliding. I feel completely out of control. I read all these posts with all these acronyms and I dont' know what they mean. Her+, her2+ etc etc. Like ive entered a foreign country. It reminds me of all the acronyms we use every day at work and never think a thing of it.

Ok I'm rambling now. I'm so sorry. I'm glad I found you all and there is a place to reach out to people who understand this waiting game. I admire you all so much.

Dx 12/7/2017, IBC, Left, 2cm, Stage IIIA, Grade 2, ER-/PR-, HER2+
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Dec 2, 2017 06:06PM Jennytalia wrote:

I’m not a breast cancer survivor, but my friend was recently misdiagnosed with mastitis and was just diagnosed with invasive breast cancer.


When she got the misdiagnosis we were all sure it was going to be IBC. But it’s not.

I have nothing truly helpful to add, but I’m sure someone soon will! The ladies here are so amazing and comforting.

You are in good hands here! Hang tight=)

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Dec 2, 2017 06:11PM - edited Dec 2, 2017 06:13PM by Pharmgirl69

Thanks so much Jenny! I'm hoping for good news like your friend (is "good" the right word? Probably not but you know what I mean). The waiting is the worst. And this site and these women are definitely amazing. So glad I found it. Best of everything to your friend!

Dx 12/7/2017, IBC, Left, 2cm, Stage IIIA, Grade 2, ER-/PR-, HER2+
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Dec 2, 2017 06:25PM - edited Dec 3, 2017 02:14PM by Georgia1

Hi there Pharmgirl. Three to five days business days is pretty normal to wait for biopsy results, but for sure the waiting is just awful. We've all been through it and in many ways it is the worst part. But possibly you will get benign results, so do try to think positive for now. And despite the regular use of the word "aggressive," most breast cancer is actually not that fast-moving. If you do get a breast cancer diagnosis, you'll have time to not only think about what your surgeon tells you, but to get a second opinion if you want one. All the acronyms are confusing, and you will want to discuss the biopsy results with someone you trust in any event.

Best of luck and stay in touch with us.

Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast
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Dec 2, 2017 07:03PM Pharmgirl69 wrote:

Thank you Georgia! Trying to stay positive and to tell myself what I tell my patients...."WebMD is not your friend". I appreciate your support

Dx 12/7/2017, IBC, Left, 2cm, Stage IIIA, Grade 2, ER-/PR-, HER2+
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Dec 3, 2017 11:57AM - edited Dec 3, 2017 02:36PM by sbelizabeth

Pharmgirl, I'm sorry you're going through this. Most of us here can relate to the suckiness of waiting for results. Yes, there's a possibility your biopsy will come back benign, and we will all join you in hoping for that!

However, IBC is not like the more common "lump" tumor in the breast. With IBC, cancer cells are in the lymphatic system of the breast skin and they move fast. Days count. Time is of the essence. I don't mean to scare you--I just want you to understand that with a diagnosis of IBC, treatment should start as quickly as possible.

The problem here is that most physicians, even breast surgeons, have no experience with IBC, and don't understand the time-critical nature of this rare presentation. My suggestion is that you call tomorrow morning and see if they can put a rush order on the biopsy. If you get the brush-off, call your medical director and ask her to advocate for you.

I used to be an ER nurse too, and I didn't know nuthin 'bout breast cancer! Hopefully you won't need to learn the language, but for now, that's my $4.50 worth, after taxes. Get your biopsy results bumped to to the top of the queue. Time matters.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, 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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Dec 3, 2017 01:55PM Kicks wrote:

All of us are different. I am Inflammatory Breast Cancer (IBC) and never had any redness, swelling, or peau d'orange before DX. IBC does not have 'set in stone' rules of how it presents. It is quite different than the other types that have an 'I' (Invasive/Infiltrating) - IDC/ILC - and are quite different than IBC.

Only between 1- 4 out of every 100 DXd with BC will be IBC. It does present rapidly and progresses aggressively. Hours/days matter. It forms as a 'nest' or 'bands' as opposed to how the vast majority of BCs do as a 'lump'.

It surprises me that you were told 3 - 5 days for the path. report if IBC was suspected. A week after 'it' presented in an enlarged lymph node literally overnight (size of am almond), I was able to see my PA (she was on vacation and I didn't want to see anyone else) a week later. I saw her at 11. She had me in for a new mammo at 1 that afternoon. Had the new mammo, then an US followed by biopsies. I left there about 3 and the next morning at 8 the Radiologist called (he said he woild call as soon as be had the report the next day) me to say it was as expected - IBC. That was Fri, on Monday I saw my Surgeon, saw my Chemo Dr and Rads Dr on Wed and Thursday. Then Bone Scan, CT and MRI with contrast, then PET and a biopsy along jaw that 'lot up' (nothing there). Then an EKG. So time line - presented overnight, DXd a week later - 17 days post DX started neoadjuvant Chemo (DD A/C). Total 24 days form it presenting (7 to DX and 17 to starting neoadjuvant chemo).

It's been 8 yrs since DX and I am still living and loving every day to the utmost!



Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Dec 3, 2017 02:25PM Pharmgirl69 wrote:

thanks kicks and Elizabeth! That's what I was concerned about. They rushed everything up until the results. My appt for ultrasound was at 730am. I had ultrasound, 2x mammo and the biopsy and was on my way home by 1030. My Medical Director checked (illegally) my results on Friday on the computer and they were still "in progress".

Iv'e talked to my boss, the infusion centers supervisor who also told me oh don't worry 3-5 days is normal. Well IBC isn't normal. I think you are right Kicks, no one realizes how quick this goes. And every ache and pain I've had all weekend I just keep thinking OH NO

I'll call tomorrow at 8. I might have to pull some additional strings.

Elizabeth....being an ER nurse this cancer world is foreign, isn' It? With all the acronyms we use daily, acls, Epi, lvad, etc one would think figuring this all out woyld be easier lol

Kicks....so glad to hear you'e 8 years out. So wonderful!

I'l keep you updated. No offense, but I hope I don't see you on the "newly diagnosed" side. Thank you all so much for helping me keep my sanity this weekend.

Dx 12/7/2017, IBC, Left, 2cm, Stage IIIA, Grade 2, ER-/PR-, HER2+
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Dec 11, 2017 09:38AM Pharmgirl69 wrote:

So I just found out I am ER-, PR- and HER2+. Off to find out what that means to me via Dr. Google (which I know is dangerous).

Dx 12/7/2017, IBC, Left, 2cm, Stage IIIA, Grade 2, ER-/PR-, HER2+
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Dec 11, 2017 10:14AM sbelizabeth wrote:

ER and PR negative means your particular cancer isn't fueled by estrogen or progesterone. After your chemo, surgery, radiation treatments, you won't be prescribed either Tamoxifen (pre-menopausal women) or an aromatase inhibitor (post-menopause). HER+ means the cancer tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. The HER2+ is treated with a year of Herceptin and Perjeta infusions.

Internet research for information is a great idea! Just be careful of the sites that are not professional or contain wild claims.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, 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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