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Topic: I was just diagnosed with IBC

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: Aug 12, 2019 05:39PM

Missmom79 wrote:

i was just diagnosed with IBC but she never did a biopsy. Tomorrow in the am she will do a biopsy but is pretty sure it’s IBC. I’m so devasted. I need friends

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Aug 12, 2019 05:50PM DorothyB wrote:

I'm so sorry. Hopefully she is wrong, but if she is right, remember that the dreaded word "cancer" does NOT mean you are dying and it doesn't always mean you need chemo. The diagnosis will change you life, but most of us here have gone through various treatments and are still very able to enjoy life. I think the hardest time period for me was waiting for the biopsy results. Try to stay busy doing things you enjoy during this time.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Aug 12, 2019 06:05PM Missmom79 wrote:

well she basically said i had it. They did and uktrasaoind and a 3D mammo.....she said she had to do a stero something biopsy 😰

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Aug 12, 2019 06:17PM LoriCA wrote:

Missmom I'm sorry that your radiologist said that and has you worried, but a radiologist cannot make a diagnosis of cancer. Only a biopsy can diagnosis cancer. The most that a radiologist can tell you is that there is something suspicious that needs to be biopsied. Even BI-RADS 5 only means "highly suspicious", and 80% of all biopsies are benign.

Did they find a mass on your mammogram? IBC often doesn't show up on a mammogram (or ultrasound) because it often doesn't have a mass like other types of breast cancer. If they didn't find a mass and they "SUSPECT" IBC, they would either schedule an MRI which may or may not detect any skin thickening which would then require a punch biopsy, or they may go straight to a skin punch biopsy.

Don't panic until it's confirmed by biopsy. If the biopsy does confirm it, we have a good group of people here who are very familiar with the treatment of IBC.

DorothyB, IBC is always treated with chemo first.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 12, 2019 06:24PM Missmom79 wrote:

she didn’t tell me that I had a mass. She just said with her findings that I had IBC and also she did take a peek at my breast and it was light oink and hasn’t changed at all. But she’s definite that’s what it is and I asked what my Birads score was and she acted like I didn’t know what I talking about and said well I would consider a 5 and supspisious. I thunk I had a change to peek at the mammo X-ray when it was done and it looked like sprinkled sugar toward my nipple

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Aug 12, 2019 06:39PM Beesie wrote:

Missmom,

Are you sure she said IBC? I know you went in worried about IBC, but your description of the mammogram image (sprinkled sugar) and the type of biopsy you'll be having (a stereotactic biopsy rather than a punch biopsy) sound more like it could be IDC (invasive ductal carcinoma) or even DCIS (ductal carcinoma in situ).

IBC is always at least Stage IIIB, and always requires chemo. IDC could be Stage I (or could be a higher stage - no way to know until surgery) and often does not require chemo. DCIS is Stage 0 and never requires chemo.

Good luck with the biopsy tomorrow. Hopefully the Radiologist is wrong and this isn't IBC, or even IDC or DCIS.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 12, 2019 06:53PM blue22 wrote:

Hi Missmom,

I hope she is wrong! I had a mammogram, ultrasound, MRI, PET scan FNA biopsy, core biopsy and punch biopsy of the skin before they started talking IBC. But I think they were already thinking IBC with the mammogram because they rushed everything after the mammogram.

I know how scary it is to be in your shoes. There are a lot of people here to support you!


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Aug 12, 2019 08:49PM Missmom79 wrote:

yes that’s what she said! I am positive, my mom just sat there in shock. I can’t stop crying. I was like well what’s my birade score and she said 5....I dunno if she found a mass and didn’t know what to think as if I was in total shock and disbelief. And I thought they couldn’t tell IBC on mammo or ultrasound.

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Aug 12, 2019 09:48PM LoriCA wrote:

It's not just IBC, no one can confirm a diagnosis of ANY kind of cancer without a biopsy. It has to be evaluated at the cellular level to confirm cancer. All that imaging can do is identify areas of suspicion.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 12, 2019 10:19PM Missmom79 wrote:

so could it be another form of cancer like IDC with a live biopsy. And if no cancer in the biopsy then what

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Aug 12, 2019 10:20PM Missmom79 wrote:

i wish there was someone to talk to here about having the imaging say one thing without a biopsy yet and he wrong about it.

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Aug 12, 2019 11:03PM LoriCA wrote:

IBC is a type of IDC, but instead of starting in a duct and growing in a mass, IBC starts in the dermal lymphatic system and grows in a sheet/layer, which is why it typically can't be seen on imaging. IDC is the pathological diagnosis and IBC is the clinical diagnosis. But again, you can't have a clinical diagnosis of cancer without a corresponding pathological diagnosis.

If no mass is detected on imaging, a skin punch biopsy can confirm that there are cancer cells present. They typically take several samples to make sure they get cancerous cells if they strongly suspect IBC - I had 3 biopsies done. If there aren't any cancerous cells in the biopsy, they would monitor your symptoms closely because IBC progresses very rapidly, weeks or days. They might put you on antibiotics to see if it's mastitis. If your symptoms continue to rapidly get worse, they would do another biopsy. No doctor will treat you for cancer and your insurance company won't pay for cancer treatment without a pathological diagnosis of cancer.


"i wish there was someone to talk to here about having the imaging say one thing without a biopsy yet and he wrong about it."

Missmom there are numerous threads in the "Not Diagnosed But Worried" thread of women who had BI-RADS 4 and 5 and the suspicious mass was benign. 80% of all biopsies turn out to be benign. There are even more threads of people who suspected that they had IBC, but didn't. You're not understanding that a mammogram can NOT confirm a diagnosis of cancer of any kind, and somehow your radiologist miscommunicated with you by giving you the impression that it could.

But don't take my word for it, ask Djmammo if a mammogram can confirm a diagnosis of cancer. He reads imaging for a living and won't lie to you. Post a copy of your report in his thread and he'll help you understand what it says.

I don't mean to sound harsh if I come across that way, but I hate to see you letting yourself get all worked up when you really don't know one way or the other yet. Please take a deep breath and get a good night's sleep, maybe call them back tomorrow and ask them to review your report with you.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 13, 2019 03:12AM Missmom79 wrote:

i sure wish he’d post a reply. That would be a miracle if it came back benign. My skin changes on my breast have stayed the same and have not gotten worse in three weeks. I libe kind of in a small town. Corning New York where they hav dthe glass works and make the córrele Ware (dishes) if you’ve ever heard of it. There’s a series about it in Netflix and about how they make the glass. So I’d like to be where someone knows what their doing

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Aug 13, 2019 03:14AM Missmom79 wrote:

and thank you for the kind words



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Aug 15, 2019 06:10AM Leslie2010 wrote:

Missmom79: I do pray biopsy comes back benign! I actually have to applaud there is the alertness regarding IBC in your town. A lot of big town doctors don’t have such alertness. Just as LoriCA said, the radiologist could only say ‘highly suspectable’ it is IBC, the diagnosis will have to come from a doctor after the pathology report is done.
Dx 12/15/2010, IBC, Left, 6cm+, Stage IIIB, Grade 2, 0/4 nodes, ER-/PR-, HER2- (FISH)
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Aug 15, 2019 06:43AM Traveltext wrote:

Missmom79. Best o take on board what LoriCA says. She knows more about IBC than everyone else herecombined.


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 15, 2019 09:28AM Missmom79 wrote:

yeah she said it was highly supspcious of imflmsmmtory breast cancer. I said what’s my score? (Bi-rads) she just looked st me for a second. Then she was like highly suspicious so a 5. I came in with outside symtoms in my breast, redness, well maybe more pink and a few enlarged hair follicles. That’s what made me to the dr who ordered the mammo and ultrasound. I’m already having anxiety thinking it’s spread with every lil ache and twinge. I can’t eat p, too upset. They did a core biopsy and took ten samples via ultrasound. When they did the ultrasound over my lymph nodes on the right side (effected breast) and she didn’t see any abnormality of my axillary nodes. Is that a good sign? My biopsy should be back today


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Aug 15, 2019 09:32AM Missmom79 wrote:

Leslie,

How do you get by when you found out? I have three kids. My daughter is 12 and nervous and my son who just graduated and 18 and just graduated can’t sleep. My lil guy who is 8 doesn’t really know cuz he’s kind of on the autistic spectrum.

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Aug 15, 2019 09:54AM Missmom79 wrote:

blue did you have symtoms though? Redness/ pinkness if the breast ?

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Aug 15, 2019 09:55AM Missmom79 wrote:

thank you traveltex

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Aug 15, 2019 11:04AM Missmom79 wrote:

I just got my results back and it’s called high grade DCIS....they said they don’t know it’s infamma? Someone please ehelp

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Aug 15, 2019 11:13AM Missmom79 wrote:

something about necrosis aa well


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Aug 15, 2019 11:37AM - edited Aug 15, 2019 12:08PM by LoriCA

That's good news (at least as far as being diagnosed with breast cancer goes)! DCIS is ductal carcinoma in situ. It is a non-invasive cancer and considered Stage 0. DCIS means the cancer is in your milk ducts, but it has not invaded the breast tissue, it does not have the ability to metastasize (spread to other parts of your body) and is considered by many to be a "pre-cancer". It still needs to be treated because it could possibly develop into invasive cancer.

It is not IBC, which is a highly aggressive invasive cancer. Other types of breast cancer may cause inflammatory symptoms without being true IBC, which starts in the lymphatic system.

There is a forum for DCIS here where can you find others to help answer your questions https://community.breastcancer.org/forum/68

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 15, 2019 12:27PM Missmom79 wrote:

she said there was a lot of involmemt in the breast and also when they did the ultrasound she didn’t notice any lymph node involvement on the side of the affected breast. But high grade is what makes me nervous because it’s fast growing corexct? So that’s still good news then? Also she mentioned necrosis and I forgot to mention she called it solid DCIS with necrosis. I asked her well then do I have inflammatory breast cancer and she said he did not know and that the surgeon would examine me in a week. My other question is, if it’s IbC would it say that on the path report? And also I looked up necrosis and it is dead cells and thE symtoms of that is reddness! Because of the cells dying and maybe that explains the redness on my breast.

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Aug 15, 2019 12:28PM Missmom79 wrote:

if it’s non invasive then why do I need to see a surgeon? Sorry so many questions


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Aug 15, 2019 12:56PM LoriCA wrote:

There is a very good post at the top of the DCIS forum I linked to. It was written by Beesie who is very knowledgeable about DCIS. It has very thorough explanation about what DCIS is and how/why it is treated with surgery, sometimes radiation, but it doesn't need chemo.

I suggest you post your questions in that forum, where there are people who have a lot of knowledge and experience with DCIS. DCIS is very different from any invasive breast cancer.

It is correct that DCIS would not have lymph node involvement because DCIS cannot spread to other parts of the body. If you want to post your pathology report we can help you understand it. It is not possible to have DCIS and IBC. DCIS and IBC are at complete opposite ends of the breast cancer spectrum. DCIS is non-invasive and the cancer cells don't escape the milk ducts, unless it later changes to IDC (invasive ductal carcinoma), and only a small percentage of DCIS ever evolves into IDC.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 15, 2019 01:19PM LoriCA wrote:

https://www.breastcancer.org/symptoms/types/dcis/diagnosis

More info about DCIS

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 15, 2019 01:23PM - edited Aug 15, 2019 01:25PM by Beesie

When you'd mentioned the stereotactic biopsy and the mammogram imaging that looked like 'sprinkled sugar', it sure sounded like DCIS was the most likely possibility. DCIS is great news, as opposed to IBC.

Here is a thread that will help you understand what DCIS is and what treatments may be involved:

A Layperson's Guide to DCIS https://community.breastcancer.org/forum/68/topics/790992

Edited to Add: Lori, I didn't see your post until I'd posted mine. Thanks for referencing my thread!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 15, 2019 01:43PM Flo80 wrote:

Lori is right if it’s DCIS then nothing to worry. Lori how are you doing? I have been following your posts and hope everything is well at your end.

I finally going through half way through my chemo. My oncologist thinks it’s not IBC but they did not do more than one punch biopsy. They think it’s lymphatic blockage without the cancer cells. But because there was skin involvement and also the MRI and ct showed prominent lymph nodes they will follow the same IBC protocol to treat me and I am happy that they will. The surgeon and the radiologist thought it’s IBC and the oncologist thinks as the redness was very less and pray de orange did not cover like one third of the breast. They did the CT scans of chest, abdomen and pelvis and a bone scan which were clear and it’s stage three B. We don’t have pt sc

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Aug 15, 2019 02:01PM LoriCA wrote:

Hey Beesie, thanks for writing up such a great thread on DCIS! I remember you saying in another thread that the description of missmom's mammogram sounded more like DCIS. I added the link to the article from BCO because it has a good description of what "high grade with necrosis" means.

Hi Flo, I'm likely looking another treatment change within a month, but I'm hanging tough haha! Sounds like a confusing situation for you. If you haven't yet started chemo and it isn't obviously spreading and they didn't find cancer cells in your skin, it is likely that it isn't IBC (aka primary IBC), but IDC with some inflammatory symptoms (IBC isn't true inflammation). Glad to hear that they are treating it as IBC just to be on the safe side. It really just changes the order of things, starting with chemo first before moving on to surgery. I expect they are recommending trimodal treatment - chemo, surgery, rads in that order. Hope treatment goes well for you!

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 15, 2019 02:09PM Flo80 wrote:

Thank your Lori and hope the new treatment goes well and I am sure you will be better soon. I am almost half way through my Chemo and started with 4 dense dose Ac and now 4 more dense dose Taxol. My mass is shrinking that’s they say. They said will do some MRI after the chemo. They are doing the Trimodal treatment and that’s why I just didn’t bother them doing more punch biopsies. Wish you get a speedy recovery Lori

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+

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