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Topic: Not to be a drama queen but worried about 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: May 24, 2020 11:25PM - edited May 24, 2020 11:28PM by Lifo45

Lifo45 wrote:

Hi,

In the last week I've just been diagnosed with IDC [right breast. It's in 2 quadrants (2.4 CM and .9 CM) and has impacted at least 1 lymph node. I'm ER+ve/PR -ve/HER2-ve]. We're still waiting on genetic testing results and MRI". But while reading researching resources for a second opinion I came across the description of IBC on this site. And I'm now worried about whether there's something my team missed.

My symptoms were very similar to what's described in the IBC symptoms. I felt throbbing pain radiating through my breast and it felt very similar to the pain one has when breastfeeding and have a clogged duct. This happened just before my period and the throbbing pain/sensitivity went away a few days after my period ended (this was in December 2019/Early Jan 2020 - I can't for the life of me recall which breast it was). Fast forward to April 2020 and I suddenly started feeling throbbing pain (again similar to blocked duct wrt breast feeding) and now had 2 lumps in my right breast. The lumps didn't go away with my period which led to an appointment with my PCP, mammogram/ultrasound, biopsy. The biopsy results indicated IDC - I understand it's a common cancer so I've been happy to have an "average type of breast cancer" and don't feel like I have to nail down a surgery date ASAP because it's not a rare/more challenging type of cancer.

My period is due soon so for a few days (this past Wednesday through Friday) I had the throbbing pain and tenderness in my right breast and as well as some tenderness and throbbing in my left breast (ultrasounds/mammogram of left breast are clean) and I'm now worrying that my care team missed something. Neither of the doctors I've been working with reacted or had anything to say in response to my statements about throbbing pain flaring up and going away so I thought the flare ups were a typical menstrual cycle related issue for women with IDC. But having read about IBC, and flare ups which subside and subsequently return, I'm worried.

Given a biopsy, is the pathology for IBC vs. IDC uniquely different? Is it possible for a pathologist to mistake IBC for IDC because IBC symptoms (the flare ups weren't relayed)? My apologies if I sound like a drama queen/hypochondriac but had I not thought the throbbing pain I had in December was not a big deal because it felt similar to discomfort from a clogged duct, my tumors might have been caught earlier. So now I'm exercising an abundance of caution

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May 25, 2020 02:47PM AliceBastable wrote:

If your pain starts before your cycle and then goes away, why would you think it's anything but menstrual-related pain? And your medical team knows a heck of a lot more than that unqualified, incompetent Dr. Google.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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May 26, 2020 12:50AM Lifo45 wrote:

Hi AliceBastable,

Yes, I know Dr. Google is awful and I typucally don't google conditions, But in this case, I assumed having throbbing pain that flares up and then subsides was typical for some women with IDC since none of my Drs responded or had anything to say when I described these symptoms. I'll follow up with my medical team - it was just tough waiting and wondering through the long weekend so I posted the question in case IDC vs. IBC pathologies manifest in distinctly different ways.

Thanks for responding!

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May 26, 2020 01:00AM blue22 wrote:

Do you have any symptoms in your skin?

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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May 26, 2020 02:30AM Peregrinelady wrote:

I had shooting pain with my 2.5 cm tumor, so it could be the tumor causing the pain. I would think that you would have skin involvement if it was IBC, in which they do a punch biopsy. I wasted a lot of time on what I should have done, so my advice is not to think about it too much and focus on what you can do now.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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May 26, 2020 11:01AM - edited May 26, 2020 11:02AM by Lifo45

blue22 - yes, I do have a burning sensation on my skin when I have these flare ups. If you recall how your skin feels when you have sun-burn or have burned yourself with hot liquid. That's the way the areas where my lumps are feel - only I don't have actual burns.

Peregrinelady - thank you for that dose of common sense! I'm planning to talk to a therapist because I'm struggling with managing my thoughts/reactions (anger, why me, wishing this had been caught before my lymph node were impacted). Some days are harder than others so perhaps a therapist will help me vent - then I'll be able to focus on getting the best care that I can and hopefully surviving long enough for my son to reach adulthood.

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May 26, 2020 11:55PM blue22 wrote:

Do you have anything like redness, skin thickening, peau d'oragne, warmth, itchiness, heaviness in one breast? I had all those, as well as a lump, pain in the breast and armpit area.

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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May 26, 2020 11:57PM blue22 wrote:

Don't feel bad about being angry, I almost think it would be weird not to be angry. At the same type it serves no purpose, so getting help is a very good idea. I also strongly suggest meditation.

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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May 27, 2020 09:56AM Lifo45 wrote:

Blue22 - Thanks for responding.

I don't see redness but it's felt warm and I've felt that burning sensation on the breast like one has been sun burned. I have an appointment with a BS on Thursday to discuss.

RE: Reaction to diagnosis - I'm not angry all the time but I think getting a cancer diagnosis triggers the 5 stages of grief so anger is to be expected and if I can vent with a therapist I can get past that stage more quickly and focus more on the things that really matter.

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May 28, 2020 12:14AM blue22 wrote:

I'm glad you have an appointment to discuss with your BS. If they suspect IBC they can do a punch biopsy, they can also do one to rule it out...

I would describe the pain I had to be more like shooting or stabbing pains rather than a burn. In fact it was the pain that was the first symptom I had.

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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Jun 1, 2020 11:11PM Lifo45 wrote:

blue22 - the BS said my tumor(s) didn't present as IBC based on his review of my breast MRI. So it seems the pain I experienced is menstrual cycle related - it did moderate and go away with the onset of my period.

Thanks for responding!

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Jun 5, 2020 01:59AM blue22 wrote:

Hi Lifo45,

That is great news! I am glad to hear you do not have IBC! I hope things are moving forward for treatment for your IDC. Have you received your genetic test results back? That should impact your treatment decisions.

Best of luck in your treatment and healing!

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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Jun 15, 2020 11:09PM Lifo45 wrote:

Hi Blue22 - Please excuse the delayed response. I'm finding that, for me,some weeks are better than others - I was in some pain last week and indulged in a pity party - so just didn't have the energy to do anything. The pain is gone and I'm finally beginning to feel normal and getting back to activities.

I haven't had genetic testing yet. It was supposed to be done 2 weeks ago via saliva testing but the sample was rejected. I'm submitting a blood sample tomorrow and hope to have results in ~ 2 weeks.

Thank you so much for the good wishes and taking time to be so supportive to so many of us who are at the initial stages of this journey! I hope to do the same after my recovery. Best wishes to you and have a great week!

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