Apparently I Am "Just Diagnosed." :(

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  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Oh believe me, every little hint is helpful to me. I'm still shell-shocked and "lost in space."

  • melissadallas
    melissadallas Member Posts: 929
    edited January 2021

    Youcan always ask your doc if it is okay to tape the audio of your visit on your phone so you can refer to it later.

  • minustwo
    minustwo Member Posts: 13,325
    edited January 2021

    JavaJava - you do have a trek. When I was in active chemo, it was 8-9 hours - PLUS drive time. I had to be back w/in 24 hours for a neulasta shot. At the suggestion of my son, I stayed in the medical center the night after chemo. It was the best money I ever spent.

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Thanks, everyone. I'm sure my husband will be on the phone but that's not the same as holding my hand. I am having a very bad night... crying and carrying on and having the "why me" thing. Pitiful but I am flat out terrified and very sad.

    Jana--you do have quite a drive from Woodville. One of my very best friends used to live in Woodville. I live on the east side of Harris County, only about 25 miles to the medical center. Though it takes forever to get there in the stupid traffic, and tomorrow it's supposed to be raining.

    I'm also stressed because they scheduled the MRI for 9 and they are ALWAYS running late. They scheduled the skin punch biopsy for 11 in the main MDA building three blocks away from the breast clinic. Good grief, I will be so stressed and I don't know why they scheduled those back-to-back.

    Sorry all, but I'm having a full blown meltdown.

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Jana--do you mean the walkway from that parking garage to the main building? I know that the Mays Clinic is three blocks from the Main building. My husband is dropping me off so I just "assumed" I'd go in through the front door of the main building.

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    So from that Garage 10, is the walkway over the street on the 3rd floor?

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Good grief. I have only been to Mays one time and don't have a clue. I hope someone there can tell me where I need to go. Thanks so much for trying to explain but I'm not understanding; my brain is like mush tonight.

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Thanks so much, Jana. I'm sure I'll have someone take pity on me. I don't go to the parking garage because my husband drops me off in the valet or whatever that area is. I do know where the cafeteria is so that's one good thing, haha.

    Thank you so much for trying to help me. I can't imagine that "chemo brain" could be much worse than "anxiety mental state". Have a good night.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2021

    lw422, Know that I'll be thinking of you tomorrow and you'll find help where you need it--there are people everywhere who will help because you are not the only one needing help in that crazy big place. MD Anderson is like a mini-city, but just ask for directions. The great news is that most of your treatment will be at the Mays Clinic, which is exceptionally convenient. I'm sorry you will be alone, but know that there's a legion of us "in your pocket." You can do this! I hope you'll have your husband on speakerphone for the extra pair of ears, and I know your doctor would welcome that. Please let us know how it goes. We are rooting for you.

    JavaJana, my "people" are from Woodville! My grandfather was born there, and my mother, who is big into genealogy, has photos of more headstones in the Woodville area than I care to admit. Hmmm, now that I think about it, maybe we should check to see if we are related 😉.

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

    sending love and all good wishes for your MRI, IBC team meeting and punch biopsy IW. It is a lot for you right now. Of course it is! So glad you found this forum and lots of support and shared wisdom.

    🙏💖


  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Beesy and Astrid--thanks so much; it really does mean the world to me to have found "my people." I hope I can sleep tonight and quit sniveling; I have a lot of unpleasantness ahead and thankfully I found a group that understands this.

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

    even the name sounds lovely Beesy! Smile

    'Woodville'

    Very evocative.

    I love "we will all be with you in your pocket"

    And we will IW.

    We are thinking of you. Lean on us if you need.

  • blue22
    blue22 Member Posts: 172
    edited January 2021

    Good luck tomorrow! You are in good hands!


  • Helen67
    Helen67 Member Posts: 3
    edited January 2021

    Hi ladies!

    As I read through these posts I realized what I strong bunch of loving females make up this forum.

    Sending love to each and every one of you.

    A handful of hours ago I received a call from the radiologist who performed a core biopsy of my left breast on 1.15.21: DCIS.

    My gynecologist called an hour later saying she is looking at which doctors to send me to so that I have a few 'second opinions' regarding treatment.

    I requested FMLA forms from work and took tomorrow off. Called a dear girlfriend and am doing what I can to stay positive.

    I'm in that 'shocked' rollercoaster state at present.

    This forum is a Godsend!

    Helen.

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

    Hi Helen.

    Welcome!

    Have to say it is a rather rotten way to start 2021 for you, but it is good to know your Doctor is looking out for you.

    Hopefully we can be a place of comfort and support for you whilst you navigate the path ahead and its steep learning curve.

    It's a bit early to know what your final dx will be, but there are also dedicated threads for different stages and types of B.C.

    Sending love and best wishes as you go through appts and maybe more tests in the coming weeks.

    HeartAstrid.

  • JenCanDoThis
    JenCanDoThis Member Posts: 25
    edited January 2021

    I'm just here to say I'm awaiting biopsy results at 3pm today so I understand your anxiety. Thinking of you.

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Honey, I'm home!! Thanks to everyone who posted sweet messages of support for me; your kindness will never be forgotten. The MRI was really hard for me; laying on a hard surface face-down with my face in a padded toilet-seat, an IV for dye in my arm, and my boobs dangling. Then the technician cheerfully saying, "don't move!!" like there is any human that can remain motionless for 25 minutes. Anyway, I survived but when I stood up I was dizzy and light-headed; a little nauseated.

    Jana, I had 15 minutes to get dressed and get to the skin punch biopsy, so I made a beeline for the "Skywalk" or whatever it's called and jumped on a shuttle cart. They whisked me to the main building and then I had to hike about 40 miles through the maze but finally got there after getting lost only once. Thanks again for your help with that.

    They took 2 skin punch samples; the doctor had a little difficulty telling exactly where to biopsy. Thankfully my breast doesn't look anything like the horror pictures online; other than the bruising from the punch biopsy last week it appears fairly normal; just slightly swollen.

    I don't get the results from the skin punch for a couple of days and I didn't ask about the MRI. I'll just wait till I meet my "team" tomorrow and see what's next in the chamber of horrors.

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Hello Helen and welcome. I'm sorry to hear of your diagnosis; welcome to the club you never wanted to join. You will find plenty of support here, so stick around and we'll all get through this together.

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Jen--you really can do this. Here's hoping the biopsy result will be good news for you. Hang in there.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2021

    lw, glad today is over for you. Tomorrow should be better because you'll be making progress toward treatment, and who knows, they might expedite your biopsy. 😊

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Thanks, Beesy. I'm dying to take a nap but then I won't sleep tonight.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2021

    Helen67 and Jen (yes, you CAN do this),

    We are always sorry when new friends land here, but this is a great community for support and learning. Helen, that's great your gynecologist is helping you find doctors. There's a great thread about DCIS, written by Beesie (not me, the original--I didn't realize there was another Beesy when I chose the name, so I added a "last name" to help ease confusion): Layperson's Guide to DCIS. You should read up before your appointment, because there's a wealth of information there! I guarantee you'll feel much more knowledgable when you meet the surgeon for the first time after reading it.

    Jen, let us know what you hear on your biopsy. You're not alone.

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

    IW - Brava!!!

    2 down , one to go for now.

    Plus your navigational skills are getting a work out. Winking

    Sounds pretty awful re MRI. Plenty of quality self-care required. Feet up, deep breath, a few minutes of inner 'forest bathing' (did you know some people pay a forest-bathing guide to take them on a slow forest walk?) I mean....Smilewe can do it for free with eyes closed, right?

    All good blessings for your team meeting.

    Hug

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

    Jen, hi!

    Thinking of you.

    I hope your results meeting goes well.

    Let us know.

    Sending love and a little courage your way.

    Astrid.Heart

  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Astrid, you have a way with words. :D Thanks for making me smile.

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

    Back at ya L-dub.


  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Today I received my official IBC diagnosis. So now I have a PET scan on Friday and a brain MRI on Monday. The hits just keep on comin'. I should have my chemo port within 2 weeks and then the real fun starts. Found out today that there is no chest wall involvement, which is a good thing.

    Guess I'll move over to the IBC board but I might be the only person posting there, so maybe I'll just hang out around here. Wish me luck, y'all.

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

    so sorry you had IBC cofirmed LW.

    I can't imagine how you are feeling right now. Such a lot to take in and digest.

    It is good that they are so thorough and having a team of knowledgable specialists is a great blessing.

    Wonderful to read no chest wall involvement.

    Did they have the punch biopsy results yet?

    Getting the port is a day procedure and hopefully yours goes smoothly.

    The PET is friendly compared to the MRI you had. Just a fair bit of waiting time involved on the day. Brain scan is also ok.

    I know that isn't overly comforting for you but it becomes about the little things and treasuring them.

    If you find yourself overwhelmed, it can be therapeutic to pull yourself back to here and now. You and your husband, right now, and precious time with him. Gratitude for all that is good in your life. It really helps, I promise.

    Sending love and hugs.

    Astrid.Hug


  • lw422
    lw422 Member Posts: 1,414
    edited January 2021

    Hi there Astrid. I'm still hangin' in there; I guess the final Dx wasn't such a huge surprise to me. My doctors were very positive and reassuring so I feel OK for the moment. I'm nervous about the scans (PET and brain MRI), but all the tests have made me anxious so I just want to get them over with and get treatment started.

    I haven't heard of the skin punch results at all; it was not mentioned today. The MO seemed to believe that I have an excellent chance of a "good result" since my IBC is confined to a relatively small area on my breast. I will have Taxol and AC chemo for 24 weeks.

  • elainetherese
    elainetherese Member Posts: 1,635
    edited January 2021

    ((Hugs)) The tests and scans just go on, don't they? I'm with Astrid; the PET scan is way more peaceful than an MRI.

    I did AC X 4 and Taxol X 12. It's doable, but AC gave me chemo brain. I had to write everything down! Taxol was better for my cognition, but it did give me diarrhea, which was manageable, thanks to Imodium. (I did get to know where every bathroom was in every grocery store in town, though.)

    You might want to ask about getting a heart scan before beginning AC so you have a baseline (in a small percentage of breast cancer patients, AC causes heart damage).

    Be kind to yourself.