Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Just diagnosed and can't cope

Options
13»

Comments

  • dread2020
    dread2020 Member Posts: 36
    Options

    That's great, lady! Both that the lump went away and that you have a 2nd opinion appointment and tentative plan for surgery. One of the three biopsied lumps in my right breast turned out to be a lactating adenoma, due to breastfeeding. Makes sense that those would be transient, and that yours may have resolved since you weaned.

    I'm seeing a plastic surgeon tmrw, but have pretty much resolved to just do a lumpectomy this week, if possible, and deal with prophylactic and cosmetic issues down the line, as needed. Also pursuing 2nd opinion at UCLA, and could potentially transfer treatment there, but not until January.

    Saw that you're doing neoadjuvant tamoxifen. How is that treating you so far?


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
    Options

    ladyc,

    I had my second opinions at Stanford and they were wonderful. They worked well with my team at Kaiser Santa Clara. It was self pay (thank you to my brother!) but well worth it.

    I rarely make blanket recommendations about anything, let alone bc, but I always feel that second opinions can ease anxieties and allow you to switch mo’s if you want to. I switched mo’s early on for someone who was a much better fit for me. You need to feel comfortable discussing and asking everything and anything and they, in kind, need to treat you like an intelligent adult. I realize that I have lived with bc longer than most at my stage, but even at lower stages you and your mo will be seeing each other during active tx and then follow ups. It needs to be an honest, respectful relationship between the mo and you

  • ladyc2020
    ladyc2020 Member Posts: 87
    Options

    dread - wow I didn't think mine could be nursing related but yes my last day nursing that side was 8/3 and both sides 8/6. Hoping this small one biopsied today gets the all clear. I am feeling very grateful right now :)

    Good luck with your consult tomorrow! let us know how it goes. I had a very sleepy day yesterday and thought maybe the tamoxifen but today no problems. Maybe I just needed a rest day.

    Ex - thank you for confirming that Standford is a great choice! As I'm in a small town, and though Ireally like my MO, I just wanted to get another opinion after seeing BF is recommended so much. Your advice is much welcomed, thank you 💕

  • dread2020
    dread2020 Member Posts: 36
    Options

    Jus got the pathology, it's horrible: 2/2 lymph nodes are positive, the DCIS is 2.4cm (IDC is 9mm) and 1mm IDC found in a second duct (I guess they call it a skip lesion). They say waiting is the worst, but I'd much rather be waiting right now.

  • texgirl
    texgirl Member Posts: 17
    Options

    Oh,honey ! It isn't horrible ! The cancer itself is horrible ,none of us wanted that, but your stats are not so bad .

    The first year or so after BC dx is such a blur. Our emotions are everywhere ,we strike out at those the love, w fear we will die tomorrow....I could go on. BC today has a very high cure rate and you being DCIS and 1 cm is good news . Yes ,you had 2/2 nodes.....hey girl I'm 15 + years out and I had 22/22 positive nodes and a few of those nodes were about 2 cm each ! You'll feel much better when your plan gets put together .

    I remember those first few days ....I'm sure we all do . But, it does get better in time. There are wonderful women on this site.....we all learn from each other. Use this site as a support for yourself ...in time YOU will be another woman's support

    You've got this ! Letha

  • dread2020
    dread2020 Member Posts: 36
    Options

    Thanks for responding, Texgirl. The shock and awe is as bad as, or maybe even worse than, when I got the original diagnosis. Since then, I have built up some kind of representation of the world that was endurable, in which this was early stage and I was gonna be fine. That vision sure got a boost when I woke up from my lumpectomy and was told that the margins and the hottest sentinel were clear. Instead, the pathology revealed this weird invasive skip lesion, and both nodes tested had mets.

    Don't know what to do with myself now. Like the thread says: can't cope.

  • angieb92
    angieb92 Member Posts: 291
    Options

    dread - first of all I want to send you a big COVID-free hug and tell you everything will be okay!

    This forum and others are full of ladies with a positive node count into the 10s and 20s and this was back in the day when the treatments weren’t so targeted. Also, the DCIS is very good news.

    What you are going to do now is to hold your head up and keep moving forward! Now that your doctor’s know what they are dealing with and the fight is on! Keep planning fun events. Keep smiling. Keep laughing! Cancer is a thin slice of your life pie right now. Don’t let it consume you!


  • beesie.is.out-of-office
    Options

    dread, as Texgirl said, breast cancer is horrible, but your pathology is not.

    First off, the DCIS doesn't count. It's non-invasive and while it has to be removed, it doesn't affect prognosis or staging. Whether you had 1mm of DCIS or 5cm of DCIS, your stage, treatment and prognosis would be the same. What counts is the largest focus of IDC, which is 9mm. That's small. It's a T1b tumor.

    The second 1mm IDC - hmmm....you say it's in a duct. Is it IDC or DCIS? DCIS is in the ducts while IDC is in the breast tissue. And it's pretty common for DCIS to skip in the duct. But even if it's IDC, 1mm is tiny and it doesn't affect your staging or treatment or prognosis.

    Positive nodes are scary, but remember that the role of the nodes is to keep bad things out of the rest of the body. So your nodes did their job. With two positive nodes, your nodal status is N1.

    Using the traditional TNM staging, a T1N1M0 diagnosis is Stage IIA. But a couple of years ago, a second methodology of staging was introduced, which also incorporates ER, PR, HER2 and grade. These pathological factors can increase the risk associated with some diagnoses, or decrease the risk. In your case, being grade 2 and ER+/PR+/HER2-, your risk and staging is reduced. Your Pathological Prognostic staging is Stage IA. That's as favorable as invasive cancer gets.

    image


    image

    Either way, whether Stage IIA or Stage IA, you have a very treatable, early stage cancer.

    Which I know right now doesn't make it any less scary.



  • dread2020
    dread2020 Member Posts: 36
    Options

    Thank you, thank you, thank you! Thank you for telling me it will be alright - it's all I want to hear right now. Thank you for telling me to hold my head high and keep smiling - that's what my young children deserve and must have! Thank you for telling me it gets better - I have to believe it, there's no other path forward.

    Beesie, I hear you on the 2 nodes, but since that's 100% of the nodes tested, it's definitely 2 and counting. The additional lesions are hard to understand. I tried to get as much info as possible out of my breast surgeon over the phone, but it was a pretty helter skelter conversation, since I was panicking and she has a heavy accent. This is what I gleaned: she took out the tumor and some margin around it. The border next to the lesion was clear, but she incidentally cut through another duct and found this additional 1mm IDC. I immediately asked if that meant I was multifocal, but she insisted on calling it a skip lesion, kept referring to a second duct, and also insisted that it was invasive. So, I assume that the DCIS has skipped and a second IDC has grown out of that DCIS.

    Again, I am immensely grateful for your replies to my distress signal - I had no place to go, and then I did. Still, I also just want to use this space to emit a primal scream of absolute...dread. When I heard my surgeons lamenting voice as she greeted me in that call earlier, I told her, I don't like your tone, and she said, well it's because I don't like these surprises, and I knew then, but I still had to hear it all, and try to grasp it and try to not ram my head through the window. It's the pits.

  • barbara4
    barbara4 Member Posts: 10
    Options

    Dear dread2020,

    I do not know a lot about breast cancer. Being recently diagnosed all this is new for me. I understand your feelings, and I am sure that a lot of people here understand you too. Maybe thisis not the best moment in our life but it will get better.

    Big hug,

    Barb

  • dread2020
    dread2020 Member Posts: 36
    Options

    Thanks barbara, I think I can safely say it's the worst moment so far, but here's to it getting better!

  • dread2020
    dread2020 Member Posts: 36
    Options

    Apparently there's also extra-nodal extension (1mm) on at least one of the nodes. And the two skip lesion (1mm) foci are definitely IDC.

    I feel like the doors on this train are locked and the next stop is stage 4. I'm in the no food, no sleep, continuous crying place. I know others on this board have it worse, I don't want to be a whiner, but I'm a wreck.

    Asked breast surgeon for an anti-depressant and she said to ask the MO. Will do that tomorrow and don't foresee any issues, but that will take days to kick in. Any suggestions for something fast-acting meanwhile? I'm scared of Xanax. Hubby took it for a period and had suicidal ideation coming off of it.

  • norcals
    norcals Member Posts: 208
    Options

    Dread2020,

    My pathology report after my lumpectomy also showed ENE (extranodal extensions) and MO was not concerned about it. The ENE was present in nodes with trace amounts of cancer cells (isolated tumor cells) and were considered node negative. It is my understanding that ENE does not have much bearing on spread or staging (others on this site may be able to correct me). Hopefully, your MO will be able to go through the pathology report more thoroughly.

    My BS was not as happy with my pathology report, but she was hoping for PCR (she is a fighter and wants the best results). On the other hand, MO was ecstatic with the report because she saw more nuances.

    You will get through this

  • angieb92
    angieb92 Member Posts: 291
    Options

    Dread - take Melatonin to help you rest. I take 3mg at night but it comes in 5mg and 10mg. At least you can rest your mind and your spirit.

    Don’t apologize for voicing your fears. We all had them and some still do. This is the place for you to come and vent

  • minustwo
    minustwo Member Posts: 13,153
    Options

    Or Benadryl. That knocks out a lot of us even though it's just a long time antihistamine.

  • lillyishere
    lillyishere Member Posts: 773
    Options

    Dread, we all felt the same way when we got diagnosed the first time. It is a shock! But you will feel better once you and your MO will have a plan. You will be in a treatment and you will learn to live following a new path of your life. Try to find your silver lining. Mine is appreciating days and things I was taking for granted. :)

  • bcincolorado
    bcincolorado Member Posts: 4,701
    Options

    Glad you are checking into things. Best wishes to you.

  • dread2020
    dread2020 Member Posts: 36
    Options

    Thanks all! Got some melatonin and am looking forward to getting some sleep tonight.

  • ladyc2020
    ladyc2020 Member Posts: 87
    Options

    so sorry you got this news. Sending a big hug to you.

    Stay away from xxanxx if you can, there are much better and more appropriate drugs. Xxanxx is a beast to kick - the Pysch dr I used to work for would NEVER prescribe it, ever. Primary care physicians often prescribe it, but it’s bad stuff.

    I hope you can process and feel strong again very soon! 💕


  • 2019whatayear
    2019whatayear Member Posts: 468
    Options

    I hope you get some sleep it can make such a difference - same with water- stay hydrated it really helps - you can ask your nurse navigator if they have any therapy recommedations. What helped me was just a couple of sessions to help me find perspective. Like logically based on your pathology the odds are in your favor but it is all so scary. I wish docs would tell us that the biopsy results are preliminary and we won’t know for sure what’s the final result until after surgery - as far as nodes/size/ stage -

  • LittleBungle
    LittleBungle Member Posts: 4
    Options

    Hi dread

    And hi everyone. I’m new here. Just wanted to offer some support as Iknow how crappy those early days are. You will feel better - the uncertainty is a mind kick but it will come to an end. Just get through each day, hour , minute as best you can until you are given a full plan.

    I had a lot of scans and MRIs to check for spread following my initial diagnosis and there was no spread/ no mets- they were worried as I had 2 multifocal tumours. In the end after my op 3 out of 12 nodes were cancerous. I’m just done with chemo and waiting for radiotherapy. Nothing so far including chemo compares to the early days anguish of waiting for full confirmation. Really hoping you are getting a little bit of sleep. And shout out to your husband- he sounds amazing, just like mine 😀

  • dread2020
    dread2020 Member Posts: 36
    Options

    Hi Bungle,

    Thanks for the support! And thanks again to lady, whatayear, and everyone else that took the time to encourage and empower me when I first joined this community. I am done with active treatment now, and am coping reasonably well. Still grief-struck at the thought of losing my family, and fearful of what lies ahead, but also just living and enjoying my life, trying to savour every moment with my wonderful kids and husband. In the end, none of us has time to waste, but only some of us know it...