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 14, 2021 12:39AM kimberly1981 wrote:

I'm so sorry you find yourself here with all of us and especially during COVID which just makes everything so much harder and more isolating. The waiting is truly the worst part, but once you know what you're dealing with and have a plan for the first step it will get better. One of my nurses told me early on to think of it like eating an elephant - if you think about having to eating the whole thing, you'll go mad, so just focus on one bite at a time.

Dx @ 39, IDC left 3.3cm & 1.4 cm, 1 known node Dx 8/3/2020, IDC, Left, 3cm, Stage IIB, Grade 3, ER+/PR+, HER2+ Targeted Therapy 8/27/2020 Perjeta (pertuzumab) Targeted Therapy 8/27/2020 Herceptin (trastuzumab) Chemotherapy 8/27/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/21/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 3/9/2021 Whole breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 14, 2021 12:51AM lw422 wrote:

Thank you so much, Astrid. I'm sorry that this is happening to ALL of us. It's so helpful to have landed here where kindness and knowledge are so freely shared, and I'm grateful to each one of you for acknowledging me. I'm certain that belonging to such a supportive group will help me on this scary road I must travel.

Dx IBC, ER-/PR+, HER2-
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Jan 14, 2021 12:59AM lw422 wrote:

Hello Kimberly; how lucky you are to live in beautiful San Diego. I know that none of us wants to be here, but how fortunate for newbies like me that all of you are so kind and comforting. Your nurse is very wise; those "small bites" are much easier to handle for sure. For right now I feel strangely calm but I know that my emotions are going to be all over the place. Thank you for your response to me; I appreciate it more than you know.

Dx IBC, ER-/PR+, HER2-
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Jan 14, 2021 11:18AM alicebastable wrote:

My advice to any newly diagnosed person is to deliberately set aside time for fun - doing outdoor things like hiking if the weather permits, getting your favorite carry-out or delivery and watching a silly movie, cranking up the music and dancing until you're pooped, going for scenic drives - whatever is possible depending on your weather and personal preferences. Do this as often as you can between appointments, surgery, and treatments. I did this and looking back at 2018, I remember the fun things much more than the dreary medical stuff.

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 14, 2021 01:48PM lw422 wrote:

Thanks, Alice. I hope I'll get to that point, but right now I'm consumed with all the details, with fear and anxiety thrown in to the mix.

Dx IBC, ER-/PR+, HER2-
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Jan 14, 2021 02:31PM lw422 wrote:

Update: MRI scheduled for January 19.

Can anyone comment on the MRI process? I have had an MRI on my neck for disk problems so I know about the noise and the claustrophobia. Is the breast MRI painful in any way? They said it will take 2 hours!!! YIKES.

Dx IBC, ER-/PR+, HER2-
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Jan 14, 2021 02:36PM abigailj wrote:

my breast MRI was not painful but the MRI assisted biopsy on the breast subsequent to that was. Best wishes to you.

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): DIEP flap, SIEA flap; Reconstruction (Right): DIEP flap, SIEA flap Surgery 6/23/2020 Mastectomy (Left): Nipple Sparing, Skin Sparing; Mastectomy (Right): Nipple Sparing, Skin Sparing; Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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Jan 14, 2021 03:13PM sondraf wrote:

Breast MRI will be done on your front, breasts go into two little holes (yes, its awkward!). Just be aware that there is a hard plate that your breastbone will rest against, and your arms will be overhead (like superwoman) for a while - some women have difficulty with their shoulders in that position or resting on that plate.. I had to arrive early as there was some prep to change, had a cannula inserted, getting situated on the table, etc. So while the imaging itself is like 15 to 20 minutes, there is a lot of messing around and they will probably be sterilizing the machine quite a bit before you are called in.

As your head is out of the machine and you are pointing at the floor its FAR less claustrophobic than a back series. I seem to recall I had headphones on as well to block the noise.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy 11/29/2019 Ibrance (palbociclib) Surgery 11/28/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Targeted Therapy 3/1/2022 Lynparza (olaparib)
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Jan 14, 2021 03:34PM lw422 wrote:

Thanks, Abigail. There has been no mention of a biopsy; hopefully since I had the needle aspiration and core biopsy when they did the ultrasound that isn't necessary. I appreciate the good wishes.

Dx IBC, ER-/PR+, HER2-
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Jan 14, 2021 03:41PM lw422 wrote:

Thanks for that information, Sondra. I was a bit put off when I saw that the test was scheduled for 2 hours!! I told my husband there is no way I can stay in that position for that long!! I suppose I'll have to deal with it; just another unpleasant but necessary thing. I'm glad my head will be outside the machine, though I don't get claustrophobia. When I had a closed MRI for my neck disks I just closed my eyes and it was easy.

I had to look up "cannula." Haha, I'm totally ignorant of all the medical terms that I'm sure will become my second language soon. Is the dye stuff radioactive or just a dye?

I appreciate the response; you have been very helpful to me and I thank you.

Dx IBC, ER-/PR+, HER2-

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