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Topic: Apparently I Am "Just Diagnosed." :(

Forum: Just Diagnosed — Discuss next steps, options, and resources.

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Posted on: Jan 13, 2021 03:34PM - edited Mar 3, 2021 06:31PM by LW422

LW422 wrote:

Hello everyone. Here I am, terrified and confused like most of you were when you got "The News No One Wants To Hear." I had what appeared to be a light pink bruise on my right breast the week before Christmas and wasn't concerned. Watched it for a week or so to see if it would go away and decided to Google. Bad idea, but at least it prompted me to see my PCP right away. (Note that I have no peau-de-orange, no heat in the breast, no 1/3 of breast turning red, no lump, no hardness, no itching, no other apparent symptoms other than breast is slightly swollen and a light pink "bruise".)

My doctor took one look and said I needed to have a mammo/sono and I scheduled them as soon as I could. Luckily for me, I live 25 miles from MD Anderson in Houston, so that's where I spent my day yesterday. I had a diagnostic mammogram w/tomo (whatever that means), a sonogram, and two biopsies...needle biopsy to lymph node and core biopsy to the largest mass in my breast with clip placement. I will have followup MRI and skin punch biopsies next week (hopefully) and meet with my "team."

There are no results back from the core biopsy yet but the lymph node was positive for cancer so I'm pretty sure I know what the core biopsy will say. Naturally my biggest fear is IBC, so even though I'm holding it together so far, an IBC diagnosis will be devastating (not that any BC diagnosis isn't devastating, but IBC... UGH.)

Here's a little blurb from My Chart sonogram test results:

Right breast:
There is right breast global skin thickening, correlating with mammography. A dominant area of right breast skin thickening is seen at 3 o'clock position and correlates with an area of erythema. Skin thickening measures 0.5 cm maximally. There is no sonographic correlation for mammographic asymmetry in the anterior central breast.

There are multiple (at least 5) subcentimeter masses in the upper outer quadrant. This appears to correlate with the mammographic finding of asymmetry in the lateral breast. The largest mass is irregular and hypoechoic with angular margins at 10 o'clock position, 12 cm from the nipple measuring 0.9 x 0.6 x 0.5 cm. This mass was targeted for core biopsy and clip placement today.

Right nodal basins:
There is one malignant-appearing right axillary level I lymph node measuring 1.9 x 1.3 x 1.2 cm with replacement of the fatty hilum. This correlates with the mammogram finding of an abnormal-appearing lymph node. This lymph node was targeted for fine-needle aspiration and clip placement.

There is no right axillary level II, axillary level III, or internal mammary lymphadenopathy. There is no suspicious-appearing lymph node in the right supraclavicular region.

ACR BI-RADS Category: 5: Highly suggestive of malignancy.
Skin punch biopsy is recommended for right breast erythema.
Breast MRI is recommended.

And the result of the needle biopsy of the lymph node:

Immediate AssessmentAdequate cellularity, favor malignant
Major ClassificationMALIGNANT
DiagnosisA. Lymph node, right axilla, fine needle aspiration:

METASTATIC HIGH GRADE CARCINOMA, CONSISTENT WITH BREAST PRIMARY


I hope that "metastatic" thing isn't as scary as it sounds. Singing

Since I don't have the details of what type of cancer I have yet, I'll just put this here and move to the appropriate section once I know for certain what I am facing. I have been reading this forum for about a month but had nothing to contribute except a bunch of angst-filled questions, so I mainly read to see if others had already asked them. Nice to meet you all and I wish the best for all of us.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 03:45PM mtspacekace wrote:

Hugs. You are in the right place. What a blessing you were able to get all of that done in one day. I had to wait a week or more between appointments. The best advice, don’t google. Once you get results from the biopsy the wheel will start to spin. You will get through this.

Diagnosed at 38. Dog mom. Wife. Rancher turned warrior, currently busy kicking cancers ass. Dx 6/3/2020, IDC, Left, 2cm, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (FISH) Dx 6/3/2020, IDC, Left, 2cm, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/7/2020 Perjeta (pertuzumab) Chemotherapy 7/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/7/2020 Herceptin (trastuzumab) Surgery 12/16/2020 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 13, 2021 03:51PM ctmbsikia wrote:

So sorry. Yes that was fast to do tests and biopsy same day. Hopefully a Doc called you and spoke to you, and you didn't just find that report.


Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Jan 13, 2021 03:53PM LW422 wrote:

Thanks so much, MTSPACEKACE. I can certainly use all the support I can get right now. I appreciate your response and my best wishes to you.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 04:00PM LW422 wrote:

Hello ctmbsikia and thank you. Yes, it was very lucky to have all that accomplished in a single day, though it was a day from hell and very exhausting. I was able to get in to MD Anderson and they have things down to a science (so to speak) as far as testing and diagnosis. I'm waiting on the scheduling call to set up the MRI and punch biopsies and wondering if my blood pressure has maxed out due to stress.

I met with a doctor at the end of the day yesterday and she went over the test results with me, though they appeared almost immediately in My Chart. I was pretty shell-shocked during that conversation and unfortunately my husband was not allowed to accompany me into the facility due to Covid.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 04:46PM Beesy_The_Other_One wrote:

lw422, sorry to meet you here, under these circumstances, but you have found a great community. I'm also treated at MD Anderson (live in W. Houston) and can't say enough good about it. If it makes you feel better about the word metastatic in the description of the lymph node biopsy, anything cancerous that is not part of the primary tumor would be described that way, meaning the cells they found in the node were consistent with breast cancer. One thing that might help you at your next appointment(s) is that you can have your husband on speakerphone. It's a lot to take in when your head is reeling, and Covid is not helping your situation.

You'll read it over and over again, but you're in the hardest part, waiting. Once you get going, you are doing something about the problem! The best thing I read early on in my treatment was, "You don't have to be brave. You just need to show up." You can do this, lw422!

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jan 13, 2021 04:53PM MelissaDallas wrote:

Hi lw422. The “metastatic” referring to the lymph node in breast cancer is still just considered “local” cancer. It is used differently than metastatic referring to spread to other body parts. They would only know about distant spread with other scans

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Jan 13, 2021 05:01PM LW422 wrote:

Hello, Beesy-the-other-one and thank you for your kindness. I live on the east side of town and though it's not far to drive, the traffic is a nightmare (as I'm sure you know) and I'm totally intimidated by the Medical Center. I feel blessed to have access to the top-tier medical treatment provided by all of the Medical Center facilities, though. I originally scheduled my mammogram/sonogram with Houston Methodist because my PCP is a doctor there and they have facilities closer to me, but after reconsidering I decided to cancel those appointments and head for the Big Guns.

Thanks for the explanation of the "metastatic" lymph node. I have so much to learn.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 05:05PM LW422 wrote:

Hi Melissa-Dallas. Another Texan showing up to support me! My oldest son lived in Dallas until he relocated to Oregon. I have 5 grown kids and they are scattered all over the state except for that one.

Thanks so much for the explanation of "metastatic" in relation to the lymph node. So many of these terms are terrifying to me at this point. Thank you so much for taking the time to respond.


Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 05:14PM LW422 wrote:

UPDATE: My core biopsy result just popped up in My Chart. So far it's IDC, but of course the punch biopsy and MRI could tell a totally different story next week.


DiagnosisA: Right breast, 10:00, 12 cm from nipple, ultrasound-guided core biopsy:

INVASIVE DUCTAL CARCINOMA, NOTTINGHAM HISTOLOGIC GRADE 3 (POORLY DIFFERENTIATED). (SEE COMMENT).

CTA/DAQ


CommentImmunohistochemical stains for biologic markers are pending.
Gross DescriptionA:

Breast, right, location 10 o'clock. dfn: 12 cm: Consists of 4 cores of yellow lobulated fibroglandular tissue ranging from 1.2 to 1.4 cm in greatest dimension and , entirely submitted in A1-A2 (two cores each). JH


Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 05:28PM MelissaDallas wrote:

Have they scheduled the skin punch biopsy yet, or has it been done?

Until you get the ER, PR and HER results back you won’t hear much as to plan.

Yeah, Texas girl through and through! My mom is in Daughters of the Republic of Texas. I’m moving back to my hometown, Denton, in a couple of months and am really excited about it

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Jan 13, 2021 05:42PM - edited Jan 13, 2021 05:56PM by LW422

Melissa--I'm waiting to hear on the appointment scheduling for the MRI and skin punch. They will do the MRI first because apparently the skin punch irritation can cause some questionable MRI indicators (?) I wish they'd hurry up and call, but I realize I am not the only patient in Houston and Covid is screwing everything up.

Do you happen to know what that "dfn: 12 cm:" means in that comment on my diagnosis? Is that the combined size of all the tumors or what? (Since each one is 1.4 cm or less.) Will the ER, PR and HER results be obtained from that core biopsy sample or will there be more tests to determine those? (Sorry if I'm annoying you with questions.)

My son went to UNT in Denton! I hope your move goes smoothly.


ETA: NEVERMIND about the "dfn:12 cm". Apparently that's "distance from nipple." Duh.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 05:55PM - edited Jan 13, 2021 05:58PM by ShetlandPony

My guess is that “dfn" means “distance from nipple". So that would just be part of describing the location.

Your report says markers are pending. That is the ER, PR, Her2 and possibly a couple others.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jan 13, 2021 05:57PM LW422 wrote:

Hello there Shetland Pony, and thanks for your help. I'm such a goober with all the terminology right now. I appreciate your response very much.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 05:59PM MelissaDallas wrote:

It is “mapping out” the location where the biopsy was done-location in the breast. Can’t think of the “d” off the top of my head but the “fn” is “from nipple.”

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Jan 13, 2021 06:01PM ShetlandPony wrote:

It’s a learning curve! I edited my previous post while you were posting. Looks like they already have what they need to check ER, PR and Her2; just waiting for the lab to give the results.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jan 13, 2021 06:26PM LW422 wrote:

Thanks, Melissa.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 06:28PM LW422 wrote:

Shetland Pony--you are so right about the learning curve. I think my brain is full already and I'm just getting started.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 06:31PM - edited Jan 13, 2021 06:33PM by ShetlandPony

Time to start a notebook with all your notes, records, reports, and a list of your questions. Or at least make sure everything has been released to the portal. Remember to take mental health breaks from this stuff. Go outside, pet the dog or cat, watch a comedy, exercise, etc.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jan 13, 2021 06:49PM - edited Jan 13, 2021 06:50PM by LW422

Thank goodness for that "My Chart" portal. All the results are there, including the actual images. I'd have to dedicate a file cabinet to all that stuff! I will keep my own notes and lists questions; thank you for the suggestion. I am typically a "researcher" who annoys my doctors, but I know we are our own best advocates in this kind of thing.

I think it will be a while before I get a mental break. Right now I'm busy planning my own funeral in my head, and choosing my husband's next wife. :D

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 10:01PM amanda6 wrote:

just sending support & I'm so glad you'll be treated at md anderson. Not currently in tx but have lived in Houston & still pine for it at times - the food! So sorry this happened to you - you'll soon be on a path, you're in fantastic hands at md & having your hubs there on speaker phone is a great idea. Cancer treatment is not a walk in the park but it is very doable- you'll be ok. Sending all good vibes & wishes...( & I like your sense of humor, that's a definite asset!)

Dx 2/2010, Left, 2cm, Stage IIIA, 4/10 nodes, ER+, HER2- Radiation Therapy 8/30/2010 Breast, Lymph nodes Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole) Surgery Lumpectomy; Lymph node removal
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Jan 13, 2021 10:11PM - edited Jan 13, 2021 10:11PM by AliceBastable

My surgeon gave me a huge binder notebook with a lot of general information and printouts specific to my diagnosis, plus pages where I could make notes for myself and formulate any questions. It was so helpful to have besides the MyChart version.

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 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Jan 13, 2021 10:29PM - edited Jan 13, 2021 10:29PM by LW422

Thanks so much, Amanda6. I can certainly use all the "good vibes" I can get! I'm kind of amazed that I'm not huddled in a corner, trembling. I usually am "high anxiety" and this is certainly something that pushes that button. Right now I just want to get the show on the road with treatment. I appreciate your kindness very much.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 10:32PM - edited Jan 13, 2021 10:32PM by LW422

Thanks for the suggestion, AliceBastable. A binder is a good idea to keep things together. Right now, each phone call I get from MD Anderson ends up being documented by a bunch of random scribbled half-sentences on a notepad.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 10:53PM - edited Jan 13, 2021 11:36PM by Taralynn

Hi LW, so sorry you're here. It's so great that your doctor took this seriously and you got all these scans so quickly. IF this is in fact IBC, it's so often misdiagnosed and answers can be hard to come by. You seem to already have an awesome team!

That being said, I have IDC but had redness and swelling on my affected breast. I was terrified it had somehow turned into IBC but my doctors reassured me that wasn't the case. I had a hard time believing them. I am 4 weeks out from surgery and there was no cancer in the skin and the redness and swelling is now gone. Just wanted to add my experience as I could not find any stories of people in a situation like mine.

Please keep us posted on your final results ❤️

Mom of 3, Diagnosed at 39. Dx 10/15/2020, IDC, Right, 3cm, Stage IB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Surgery 12/15/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 3/31/2021 AC + T (Taxol)
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Jan 13, 2021 11:03PM - edited Jan 13, 2021 11:04PM by AB45

Hi,

I am also a worrier and a very anxious person. I am newly diagnosed as of November 2020 and I can relate to you so much! Waiting will be your path for the next bit of time. I would say from experience that scans and tests do not always tell the full story. Just wait until your hear your plan and then you will need to wait from pathology from surgery to really know your story. For now it is ok to cry and scream but do not stay in that place too long because you will need your energy to fight and will later on.

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Jan 13, 2021 11:21PM LW422 wrote:

Hello TaraLynn and THANK YOU SO MUCH! I'm so sorry that you have a situation similar to mine, but I'm so GLAD that you didn't have IBC and that gives me hope. IBC is my biggest worry. My best wishes to you in your recovery, and please keep in touch... I want to know how you are doing.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 11:28PM LW422 wrote:

Hello AB45, and thank you so much for your sweet post. Seems that all of you who walk this journey are so kind and accepting. Yes, I'm high-anxiety which affects me physically... racing pulse, higher blood pressure, upset stomach... just ugh. I'm sorry that you suffer anxiety too, and even sorrier to hear of your new diagnosis. May I ask which type of BC you have? My best wishes to you in your treatment journey and I hope we can walk this path together. I appreciate your post to me very much.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 13, 2021 11:39PM wrenn wrote:

I'm so sorry for your diagnosis but so relieved that you found this forum and are getting support. This site was such a great resource in the beginning for me when I had no idea what anything meant. Keep leaning to people here for support and information. You will be held close.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jan 13, 2021 11:50PM LW422 wrote:

You are so kind to post, Wrenn. I can already tell that this place is a goldmine of information for the newly-diagnosed. I will be reading and try to absorb things while I wait on my "final results". Thanks for being so kind; that means so much right now.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel)
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Jan 14, 2021 12:28AM Astrid wrote:

Iw422, I'm so sorry this is happening to you.

You have been given great answers already, and even with a positive node, you can still be classified with early stage diagnosis.

A stressful time for you and family for sure!

The advice to take breathers, go look at the sky and touch the grass...any simple little thing to rest your very full and racing mind. Take it a few hours at a time.

You can do this, and many here will walk with you as you go through whatever is ahead.

Sending a gentle cyberhug.

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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