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

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

Posted on: Jan 13, 2021 03:34PM - edited Nov 22, 2022 12:23PM by lw422

Posted on: Jan 13, 2021 03:34PM - edited Nov 22, 2022 12:23PM 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, 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.)


Dx IBC, ER-/PR+, HER2-
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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.

Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach.
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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 IBC, ER-/PR+, HER2-
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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 IBC, ER-/PR+, HER2-
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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 (Left): Sentinel; Lymph node removal (Right): Sentinel; Mastectomy (Right); Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Radiation Therapy 9/13/2021 Right breast, Lymph nodes Chemotherapy AC
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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 IBC, ER-/PR+, HER2-
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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 IBC, ER-/PR+, HER2-
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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.

Triple Negative Metaplastic. I had one dose of Cytoxan/Taxotere and was then cut off due to complications. Surgery 8/16/2013 Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy (Left): Simple; Mastectomy (Right): Simple
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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 IBC, ER-/PR+, HER2-
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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-, Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2-, Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2-, Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy AC Radiation Therapy Whole breast: Breast, Chest wall

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