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Apparently I Am "Just Diagnosed." :(

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lw422
lw422 Member Posts: 1,404
edited September 2022 in Just Diagnosed

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.)

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Comments

  • mtspacekace
    mtspacekace Member Posts: 123
    edited January 2021
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    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.

  • ctmbsikia
    ctmbsikia Member Posts: 757
    edited January 2021
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    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.


  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2021
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    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!

  • melissadallas
    melissadallas Member Posts: 929
    edited January 2021
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    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

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.


  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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


  • melissadallas
    melissadallas Member Posts: 929
    edited January 2021
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    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

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • melissadallas
    melissadallas Member Posts: 929
    edited January 2021
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    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.”

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Thanks, Melissa.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Shetland Pony--you are so right about the learning curve. I think my brain is full already and I'm just getting started.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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

  • amanda6
    amanda6 Member Posts: 50
    edited January 2021
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    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!)

  • alicebastable
    alicebastable Member Posts: 1,945
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • Taralynn
    Taralynn Member Posts: 45
    edited January 2021
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    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 ❤️

  • ab45
    ab45 Member Posts: 153
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    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.

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2021
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    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.

  • kimberly1981
    kimberly1981 Member Posts: 30
    edited January 2021
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    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.