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Calling all TNs

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  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    May I just say, I hate February? My original diagnosis was handed to me on Feb 27, 2019. The hand I was dealt, considering it was tnbc, was not terrible -- 1.5cm tumor, no nodes, blah blah blah. Was done with treatment in late September, due to my lumpectomy and short chemo schedule.

    Last year they tossed me back to screening mammograms beginning with the one I had yesterday. So screening mammo. Got the results in mychart a couple hours later. OF COURSE I need to go back for a diagnostic mammo and US. OF COURSE. Focal asymmetry 10 mm, not very far from the original tumor, more prominent than previous scans. In other words, developing asymmetry.

    I actually know intellectually and emotionally that the most likely scenario is some stupid scar tissue. I know this. I know it's the most likely. But I don't actually know that's what it is.

    So I'll go back in on Tuesday for diagnostic mammo and ultrasound. And of course OF COURSE if they see anything at all, there will be a biopsy, and probably not Tuesday. So there we are, back in the waiting game.

    I'm not prone to anxiety. I had a really good annual physical last month with my PCP. I feel healthy, generally, though always more tired than I'd like. (Yeah, also, it's winter, and that comes with it. So who knows.) But every year now, ramping up toward the physical and the imagining, I can feel some anxiety ramping up, too. Low level, but not completely ignorable. I had a really good physical, and I feel healthy, but as I told a friend, I didn't even want to believe it because I was afraid that the mammo would bring bad news.

    It's NOT actually bad news. I know that. I know it's just, hey, we need another look because we don't know what we're seeing here. And I know it's probably scar tissue, most likely scenario given my breasts and my history. But still. It was tnbc. I'm 4 years out (short of a few days) since diagnosis. I don't feel anywhere close to safe yet.

    So waiting, and following what we tell everyone waiting: find things to do that will distract you. Today I'll go to the gym, I'll work on a project or two. Sunday we have a plan for a museum visit. I think I'll start all over again watching Pride & Prejudice with Colin Firth and Jennifer Ehle. That's several hours of pleasure. And the weather should be good enough to get out for at least a couple of walks, which will help with both sunshine and activity. Okay, I'm set.


    Thanks for listening. No real need to respond. I just needed to write it out. I'll check back in Tuesday with a follow-up.

  • cookie54
    cookie54 Member Posts: 697
    edited February 2023
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    Hey mountainmia, Just want to say I hear you and I get you. Of course you know to follow your own advice but not always easy. Big hugs and good vibes your way. Had to repond, so quiet sometimes here in the tnbc world.....

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    Thanks, cookie. I really appreciate, and hugs back your way. It's so so quiet here, and really all over the site. I was going to say, kind of a ghost town, but that actually hits a little close to home, doesn't it?

  • cookie54
    cookie54 Member Posts: 697
    edited February 2023
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    It sure does! I teeter between liking to come on to chat with people who understand and the sadness that goes along with this site. Of course overall I am sooo grateful to have this site but you know what I mean. I also go on the tnbc foundation site but gosh lately talk about crickets. That makes me wonder ,is it that people just aren't on there anymore or is tnbc as small as it sometimes seams?

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    Numbers I see are that tnbc is 10-15% of all cases, so yes, that's partly it. But also, I was on a fair amount from about April 2019 until ? maybe some time in 2021. I decided it wasn't really helping my mental health to stay so focused on cancer. Of course, I had that luxury. So I backed up a lot, didn't come around as much. And then I guess there was a big site melt-down a year ago? I don't actually know anything about it. And a lot of people who used to contribute a lot don't seem to be around anymore. Whether they are mad or frustrated or ever coming back, I can't even guess.

    Feel free to private message if you'd like to visit more.

  • cookie54
    cookie54 Member Posts: 697
    edited February 2023
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    Yes agree many factor's involved. I know after my first diagnosis I definitely wasn't on as much either. Sometimes not the best for your mental health when your working on healing. Thanks for the offer, hope you get good news this week!

  • farfalla6
    farfalla6 Member Posts: 92
    edited February 2023
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    Hi MountainMia;

    We have almost exact dates and stats: I have my next mammo/sono later this month, as 4 years out. So your situation, the ups and downs and scares, is so familiar to me. I hope hope hope it's only scar tissue. I tend to pop up again here when I'm worried about something: this past summer, bad back pain, that I was scanned for and ended up being exercise injury related. For the past few weeks, I;ve been having bad GI symptoms and am worried about Ovarian cancer. Going to give it a little more time, deal with the breast cancer screening, and then, if I still have the symptoms, follow up on that.

    I am hoping that the reason our boards are relatively quiet is because many people are done with their treatment and out there living their lives.

    Thinking of you and hoping you get good news this week.

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    Thanks, farfalla. You were in my "class" when we started here. We both need to move through this month or so, come out the other side healthy and feeling more sturdy again. Thanks for the good thoughts and wishes. I'll let you know what I find out. hugs!

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    Just a follow-up. I had the diagnostic mammo and US today. The US didn't turn anything up, and the mammo only had one view that sorta maybe kinda had something that might be something. They were going to send me home with just that info (which is GREAT!!) and a call back for 6 months. I said whoa, wait a minute. I need to understand what the decision process is here. So the radiologist came in and showed me a few screens and talked through it. He still said 6 months and I said no, that's too long. The tnbc is too aggressive and too much can happen. So we compromised on end of May, basically 3.5 months.


    Anyway, good news and as I'm believing it, I'm feeling relieved. Thanks as always.

  • cookie54
    cookie54 Member Posts: 697
    edited February 2023
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    Yes, we will take that as good news for sure! Agree, glad you spoke up sounds like a good compromise to me. Glad you are relieved, keep on going girl! Hugs.

  • farfalla6
    farfalla6 Member Posts: 92
    edited February 2023
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    yay!!! Fantastic news! I’m so happy to hear this. And the doctors are pretty conservative about tnbc so if they’re not stressed, and think waiting 6 months is fine ( even though I agree with your 3 month plan) it’s fantastic news!!!

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited February 2023
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    Just checking in and saying hi MountainMia, Cookie and everyone here!

    Wishing you all WELL!

    As always, I am so grateful for these boards!

  • cookie54
    cookie54 Member Posts: 697
    edited February 2023
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    Hi anothernycgirl1,always happy to hear from a tnbc sister! I hope things are going well for you. Holding steady here still riding the Xeloda/Keytruda wave. Hoping it's a loooonng ride, next scan end of March praying for stable disease. Enjoy the rest of your weekend, well wishes back at ya!

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited February 2023
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    Thank you, cookie!

    Stay on that loooooong stable ride!


  • farfalla6
    farfalla6 Member Posts: 92
    edited February 2023
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    Posting a good update! I had my 4 year mammogram with contrast, negative!

  • cookie54
    cookie54 Member Posts: 697
    edited February 2023
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    Congrats farfalla6 , love to hear good news! Thanks for sharing...woohoo....

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    Hooray farfalla!! Great news. Let's go for 4 more! Hug

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    Honestly, that's a weird emoji. I could barely see what I was picking from.

    Loopy

  • farfalla6
    farfalla6 Member Posts: 92
    edited March 2023
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    lol, it was cute

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited March 2023
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    Great news farfalla!! ThumbsUp

  • serendipity09
    serendipity09 Member Posts: 769
    edited March 2023
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    farfalla - Congrats! So happy for you!!

  • mamacure
    mamacure Member Posts: 256
    edited March 2023
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    Sorry to bring bad news to the thread, small bone Mets found & confirmed. Have to get radiation again & maybe back on immunotherapy & low dose xeloda. It’s only been 7 months since xeloda ended. I hate this disease. Love to hear some positives. Thanks.

  • serendipity09
    serendipity09 Member Posts: 769
    edited March 2023
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    Mamacure - I'm so sorry! Sending you hugs!

  • mountainmia
    mountainmia Member Posts: 857
    edited March 2023
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    Well crap, mamacure! I'm so sorry to hear that. I hope that your upcoming treatment zaps the bone mets and gives you a stable prognosis.

  • cookie54
    cookie54 Member Posts: 697
    edited March 2023
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    Ugh mamacure this disease just plain stinks! I'm sorry to hear this. I hope your not in pain with the bone mets. Xeloda is a good at keeping things under control. I had a similar experience but with lung mets. My MO 's theory was that Xeloda was keeping things stable at 3C then finished X and lung mets arrived. I also sought a second opinion by a TNBC specialist and she agreed with my current plan. Back on Xeloda with Keytruda again since 7/22, keeping me stable so far. I wish the same for you. Big hugs.

  • divinemrsm
    divinemrsm Member Posts: 6,077
    edited March 2023
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    Hello to all. My reason for popping in this morning is to share the following message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.


    Important update:

    We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.

    During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.

    Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.

    We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!

    --The Breastcancer.org Community Moderators

    March 9, 2023

  • mamacure
    mamacure Member Posts: 256
    edited March 2023
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    Thank you everyone. Cookie, may I ask what dosage of xeloda you are on

  • lw422
    lw422 Member Posts: 1,399
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    My goodness, where is everyone? I hope the forum "update" hasn't caused a mass exodus. Hope all the TNs are hanging in there and doing well.

    @mamacure — how are you and how's treatment going? I think about you often and hope you're feeling better. Check in when you can. ❤️

  • cookie54
    cookie54 Member Posts: 697
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    @lw422 I'm here!!! I pop on the forum daily but this thread is definitely a quieter one. Hoping that's a sign TN's are doing ok. May be the update I guess.I'm a lifer so I'm always reading as much as I can. You doing ok? I'm just moving along with treatment hoping to ride out Xeloda as long as possible. So far it's holding my mets stable.

  • lw422
    lw422 Member Posts: 1,399
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    Hi @cookie54 . I'm doing OK, thanks for asking. I finished Standard of Care treatment for IBC in 2021 and wasn't offered any additional treatment, I suppose because I got pCR. I was both happy and nervous about that since I feel like they patted my head and sent me out on my own. I do have regular checkups with my MO but that's it. I'm happy to hear that Xeloda is keeping you stable but I know X is hard on some people. Take care and thanks for helping to keep the thread alive.