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New day one

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jonesd01
jonesd01 Member Posts: 13
edited February 2023 in Just Diagnosed

Newly diagnosed invasive ductal dont know stage but many calcifications and grade 1 tumor. Surgeon meeting Wednesday. estrogen and prog positive and her2 negative. Spinning. Any advice appreciated. No lymph involvement seen but Im worried and upset. How long does it take to normally get surgery? I called the plastice surgeons office for a consult and the office was so rude I was speechless. I know the holidays will set things back with vacations etc. Appreciate any and all advice.

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  • alicebastable
    alicebastable Member Posts: 1,945
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    Grade 1 is good. ER+/PR+ Her2- with grade 1 means it's likely no chemo will be needed, if your oncotype score is low, but that won't be known until after surgery. Sorry I can't help you with timing, but I didn't have a plastic surgeon, just the breast surgeon for a lumpectomy. Good luck.

  • dani_p
    dani_p Member Posts: 36
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    I was initially diagnosed mid-June 2022. The breast surgeon sent me for further imaging (MRI), which led to more biopsies. After biopsy results, consultations with plastics, etc., my surgery was scheduled for July 29 2022 (double mastectomy). So, it was just about a month and a half for me, but you may be right about the holidays delaying things a bit. And, like Alice said, it will probably depend on what type of surgery you decide to have. It will seem very slow in the beginning, but looking back I'm shocked at how much has happened in just the past 6 months!

  • jonesd01
    jonesd01 Member Posts: 13
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    Thank you for your replies i know I will need to decide if bi-lateral - nothing in right breast as of right now. Leaning toward bi-lateral but more info to come from surgeon/PS. Why did they do the MRI? I think because of all the microcalcifications they will recommend mastectomy - the radiologist mentioned he wanted to speak to surgeon personally to make sure she saw all of them...ugh. I am a planner so getting my thoughts in order helps with the anxiety. So much anxiety right now!

  • moderators
    moderators Posts: 8,178
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    Welcome, jonesd01. We're so sorry you find yourself here, we know this is all very overwhelming and difficult to process, but you've come to the right place for support as you navigate this road. As dani_p mentioned, timing of your surgery can depend on many factors, some of which will be determined by additional testing. And as you mentioned, the holidays do complicate things a bit! Also, if your initial interaction with the plastic surgeon's office was an unpleasant experience, don't hesitate to call around to a few other offices and meet with other surgeons - it's important to feel comfortable with and supported by everyone involved in your care!

    You'll find lots of helpful info on the boards, but perhaps most helpful of all, you'll find that you are not alone. We're here for you!

    The Mods

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Breathe!! Once you hear your name and cancer in the same sentence, you want it out yesterday. IDC is slow growing. There may be a few more tests, more Dr appointments, and no surgery for a month or more. That’s all ok. Try to distract yourself with fun things to do and plan for now.

    Remember, you don’t have to be brave, you just have to show up.

  • minarchist
    minarchist Member Posts: 33
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    hey jonesd01, I have almost the same DX as you and already went through lumpectomy and amd treatment. they gave me an mri too, seemed standard? hopefully like me you'll avoid chemo with a low oncotype dx score. scary as this all is i personally found the radiation and lumpectomy minimally uncomfortable. I wanted to tell you that because part of our "journey" here is reading indescrible horror stories of every type about every step of treatment. I wanted you to know at least one person didn't have too bad a time of it and you probably won't either. the worst part of all of it for me has been the scan anxiety. they just found microcalcifications in my left breast and I'm off to a biopsy tomorrow, so I may be joining you lol. keep your chin up and remember to TAKE CARE OF YOURSELF. you're going to be fine and you're going to get through this

  • salamandra
    salamandra Member Posts: 745
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    I am seconding minarchist. For me, the waiting, fear, and worry were much worse than the actual surgery and radiation. I had a tough time with the hormonal treatment at first but eventually found one that worked for me.

    My first surgical oncology appointment was when I felt I could finally exhale.

    I went in assuming I was facing a mastectomy for sure, but the doctor felt that my long term outcomes would be just as good or better with just a lumpectomy, and I was glad to go ahead with that.

    My surgeon did a great job, and I didn't need a cosmetic surgeon at all. I don't think a plastic surgeon would be able to tell you much until after the consultation with the surgical oncologist, and if the surgical oncologist thinks that having a plastic surgeon would be helpful, they may have people to recommend.

    I think the MRI is to make sure there's nothing else to biopsy/surgery before they actually go in. I had one too and I think it's pretty standard.

    I think I had about 5-6 weeks between biopsy and surgery.

    The beginning is so hard! It does get better as more info trickles in.

  • starsnow77
    starsnow77 Member Posts: 55
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    Hi Jones, I'm so sorry you are facing this. It is so scary, nerve wracking, and you just want it to be over with "NOW!". The unknown was the difficult part for me. I went in for a "bad milk duct" and pathology report showed DCIS. I was blind sided. I never expected that. Just had a second surgery as they did not get it all out. Margins..which confused the heck out of me. Am waiting call from the radiation and oncology to start that path. Please remember that we are all different. even if the diagnosis is the same...each one of us is an individual and this whole thing is scary. waiting is difficult, getting ducks to line up in a row is difficult... but take care of you during all of this. let yourself process as you need to, have a weepy day if you need to, swear like a trucker if you need to....it's all okay. Let us know how you are doing we're with you!

  • kotchaj
    kotchaj Member Posts: 212
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    Try to hang on until your first surgical appointment. My physician's office, medical oncologist, made the recommendation to the surgeon, etc. for me. I just had to show up to the appointment. Your surgeon may have a plastics person that they work with if you even need plastics. Everyone is so unique in what they need. It's overwhelming and frustrating as well. I am also a planner and wanted to get everything going as soon as possible so I could check off the boxes. Let them help guide you even if it means waiting a little bit.

    In my situation, I ended up doing two types of chemo before we could even discuss surgery. As I said, we are all different, with one common denominator.

    Hugs.

  • jonesd01
    jonesd01 Member Posts: 13
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    Thank you all for your reponses - met with surgeon and will be having a bi-lateral mastectomey for sure. The tumor is not big but the calcifations are and they all look the same shape as the idc sample that tested positive. Hope to preserve nipple. MRI on right side next week and that will determine if I do both. Genetic testing also to come. The calcifications are too widespread to consider a lumpectomy. Im on with that - just want to get it done before it gets worse. I so appreciate the enouragement. Next step plastic surgeon.

  • moderators
    moderators Posts: 8,178
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    Thanks for the update, Jonesd01. Making treatment decisions is hard, but once you have a plan in place, you'll start feeling a tad bit better.

    Please keep us posted on your MRI and genetic testing results, as well as your plastic surgeon consult. We're all here for you as you navigate your treatment, and beyond!

    --The Mods

  • jonesd01
    jonesd01 Member Posts: 13
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    Quick update - outpatient Bilateral n/s mastectomy with immediate reconstruction on 1/12 - did not have lumpectomy as an option due to widespread microcalcifications and looked like 3 more distinct areas two with very small tumors on MRI. Surgery went well, healing nicely and just got prelim report that not in lymph nodes. Waiting on full report but cautiously optimistic.


  • kotchaj
    kotchaj Member Posts: 212
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    Jonesd01,

    Sounds like good news so far. As good as you can get in our situations. Nothing in lymph nodes is awesome.

    Take care of yourself as you're healing. Hugs.

  • msphil
    msphil Member Posts: 185
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    hello sweetie I am a 29 ur Survivor this yr I come back to Inspire others going thru. For i remember those words you have breast cancer. We were planning our 2nd marriages when I was diagnosed found the lump in shower I worked in O R for 15 yrs then had my own office in PEDS in City workers clinic medical records. So I kinda knew. Had biopsy 3mo chemo before after L mast got married yrs also 29th wedding anniversary this yr also my fiance now husband was so there for me it wanted lumpectomy he said please get mastectomy as Oncologist recommended. I'm glad I did. Then 7 wks roads and 5yrs on tamoxifen. Family friends and Faith Positivity got me thru. Hang in there thank of my story. msphil