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IBC lounge: roll call, support and just a good place to hang out

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  • traveltext
    traveltext Member Posts: 1,053
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    oh LW, people are still around, though perhaps like me they are waiting for the new format to become bug free. I can only imagine the problems women have with asymmetry, but what a huge decision it must be to have a healthy breast removed. There are other threads here on this topic, so hopefully you can talk to others in your situation.

    Like you, I was freaking out about lymphedema from day one since I had an axillary clearance on the mx side. This was nine years ago and I remain LE free. My method is to be scrupulous with treating cuts abrasions and insect bites on the susceptible arm. I used to fly with a compression sleeve but not these days because I read somewhere it’s not really necessary. Perhaps on a very long flight I will put it on. I assume you have taken base circumference measurements to monitor for changes.

    Anyway, good luck with the whole shit show. Just tick all the boxes for self care, take the meds and try to get on with things as best as possible. I’ll always be here. :- )

  • lw422
    lw422 Member Posts: 1,403
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    Hello all. I hope this finds the IBCers doing well. Not much to report from me; so far, so good. I can't believe my mastectomy/ALND was 2 years ago already… how time flies, huh? I'm still having LE aggravation and considering having the prophylactic mastectomy on the uniboob but still can't make up my mind.

    I hope all the IBCers will check in and let us know how you are doing, please. I hate losing touch with all of you, who helped me through the darkest days of my life.

    @mamacure , I have been thinking about you and wondering how you are doing these days. I feel like we went through this together and I really want to know how you are.

    Sending hugs to you all.

  • blue22
    blue22 Member Posts: 172
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    Hi LW. I'm glad to hear you are doing ok!

    I haven't been on the site for a while. I think the changes to the website spurred the need to move on, but I will still check in from time to time. I also find that when I start to post, I write really long rambling posts and then erase most of it because I don't know that my rambling helps anyone.

    I am also a uniboober. I rarely wear the weird little stuffed insert I bought at the hospital after my mastectomy. I'm glad I did not spend money on a more expensive prosthesis. Most days I wear shirts that are shaped so that it is less obvious I am lopsided, but honestly I don't care anymore if it makes someone uncomfortable. If I could magically erase the remaining breast I would do so, but I don't want more surgery right now if it is not recommended, which it is not in my case.

    I'm on Verzenio and AI. They affect my overall energy level significantly. I'm trying my best to move on and learn how to best manage life with the side effects.

  • traveltext
    traveltext Member Posts: 1,053
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    Long posts are fine. Any post is fine @blue22 😀 Anyway, good to hear that things are plodding on okay for you. Loved the uniboober rant!

  • lw422
    lw422 Member Posts: 1,403
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    Hey there TT, Blue, and any other IBCer who's following along. I have nothing much to say other than I'm glad some are trying to keep this thread alive. It was a real Godsend to me when I was first diagnosed and I'd like to be here for others who follow behind us, though I come to BCO less and less these days. I truly HATE this stupid forum layout; it's too hard to navigate and I can only imagine some newbie looking for help and trying to figure out this ridiculous mess. But it is what it is.

    Mamacure—you are on my mind and I'm so worried about you. If you are reading please pop in a "hi" or something.

    Take care, all.

  • traveltext
    traveltext Member Posts: 1,053
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    Alas, this post is not now active. To all my friends here I wish you well.

  • bsandra
    bsandra Member Posts: 1,017
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    All is well here too! Hugs to all, Saulius

  • lw422
    lw422 Member Posts: 1,403
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    Hellooooooo… is this thing on??? Where are all my IBCers? 🙁 I'm dropping by to announce that I'm officially 3 years out since Dx and I'm doing OK. I hope everyone who participated in this thread is also doing well. Happy New Year, IBC buddies. You all have a special place in my heart.

    It's such a shame that there's no activity here; I know that there must be newly-diagnosed IBC patients who are looking for support/answers. This used to be such a great resource; now it's easier to go to Reddit or Facebook than to try to figure out this mess.

    I don't come here anymore because I hate this stupid forum "update" so much. It doesn't look or feel like a forum at all… there needs to be a topic LIST where people can actually find something besides 4,000 posts started by the moderators. Of course they don't care what I think, which is why I checked out. But whatever.

    Everyone take care, and I hope you are well.

  • traveltext
    traveltext Member Posts: 1,053
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    Hey LW, Fantastic to hear your good news. Like you, I miss hearing news from all the folks who used to post here. I’ve been here since this topic was started by Purple Minion, and am also disappointed at the downfall of the once mighty BCO. My guess is that most have either moved on or are using the many social media pages for support. I’m on Twitter, now called X, as @malefitness. Next month I hit 10 years since diagnosis, like you at Stage IIIb.

    Anyway lots of good wishes for the new year to you and anyone else who stumbles across this post.

  • bsandra
    bsandra Member Posts: 1,017
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    Dear all, I believe we are still here. Many stage IV forums are livelier, as people there face constant hardships and feel need to connect, to get 2nd opinion. Hopefully here people will also write. I do not think social media can exchange such forums where information is stored for years and is pretty easy to find. Hugs,

    Saulius

  • wintersnow1124
    wintersnow1124 Member Posts: 1
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    I dont want to write much since it seems this thread is not as active as it once was. It is also difficult to navigate, the fact I had posts from 2016 and have to go to the end was confusing. I just wanted to connect with other IBC people as I am feeling very alone in this journey.

  • bsandra
    bsandra Member Posts: 1,017
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    Dear wintersnow, you are very welcome here. We have some knowledge and in some cases, can even advice, so if you have something on your mind, just write. And then we also smile some times:)> Hugs,

    Saulius

  • lw422
    lw422 Member Posts: 1,403
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    @wintersnow1124 — Sorry you find yourself here. Tell us what's going on with you; have you been diagnosed with IBC? This thread has lost its momentum due to the poor handling of the forum but many of us still get notifications. We have been here for each other and we will be here for you. If you are early in diagnosis/treatment we understand the feelings and anxiety. I hope you will come back; IBC is terrifying but so many treatment advances have been made. My very best to you.

    I hope all the IBCers are doing well; check in sometime and let us know. (Hi, Saulius!)

  • moderators
    moderators Posts: 8,185
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    @wintersnow1124, welcome to our community — we're so very happy you decided to join and post. As you can already see, you're sure to get great support here.

    Also, if you want to create a new post sharing your story here in the IBC forum, it will show up in Active Topics and you'll likely get some more support. Here's how to post a new discussion.

    But you're welcome to post anywhere you're comfortable. We hope you find the support you're seeking. If you need anything at all from us Mods, please don't hesitate to reach out!

    —The Mods

  • sbelizabeth
    sbelizabeth Member Posts: 956
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    Hello, old friends. I rarely visit BCO anymore; the new format is a tangled mess and it's frustrating to navigate. I'm glad to see a few here who are doing well. As of last October, I'm 12 years out from my diagnosis of IBC and still thriving, thank you, God.

  • blue22
    blue22 Member Posts: 172
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    Hi Everyone!

    I'm not active at all since the format changed. I check in once in a while but there is so little activity and I don't think the forum provides the same level of support it once did.

    I'm not a big fan of the the other forms of social media that are popular - and don't use them, so I would really like to see come back to life…. I created an account a while back on the IBC Network Foundation forum, but that doesn't see much life either.

    Hope everyone is doing ok!

    Blue

  • traveltext
    traveltext Member Posts: 1,053
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    SBE. Good to hear from you. 12 years out is good, I'm two years behind you. How time flies and we have so many fond memories of those who posted on these pages. ❤️

    Blue. Yes, what a pity the boards aren't very active. It's mostly people like us coming back to say hi. Not many people dropping in for help, unfortunately. Anyway, great to hear from you. ❤️

  • preciousbecky23
    preciousbecky23 Member Posts: 23
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    Hi there everyone! Just popping in to say hello :) I am over two years since dx and 1 year since finishing all treatment for stage 3c TNIBC and so far so good! I have had some scares and some days it’s like I’m just waiting for the other shoe to drop but most days just staying busy raising my 4 babies. My youngest (twins) were 5 months old when i was dx’d, and they will turn 3 years old in a few months! I am thankful and so blessed for every single day. I am doing Signatera testing every 3 months (which i know is a bit controversial?) but i had my third negative result a couple weeks ago and that provides me with some reassurance and helps my anxiety a bit! I am seeing the top IBC docs at Dana Farber’s IBC clinic for my follow ups and feel I am in excellent hands. I wish all my fellow IBCers well and to anyone newly diagnosed with this atrocious disease i have been in your shoes, I am here if you ever want to reach out. Much love to all!

  • moderators
    moderators Posts: 8,185
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    @preciousbecky23 thank you so much for sharing your update with us All!!

  • bsandra
    bsandra Member Posts: 1,017
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    preciousbecky23, nice to meet you and a lot of joy for you and your wonderful family - you guys deserve it. Saulius

  • lw422
    lw422 Member Posts: 1,403
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    Hey there, Becky!! So good to hear from you, particularly that you are doing well. Take care and keep in touch.

    Happy Valentine's Day to all the IBCers. ❤️

  • deniseml
    deniseml Member Posts: 68
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    hi everyone,

    Like so many, I moved on to live my life and only check back once in a while. I am 3 1/2 years out from dx. Stage 3c ibc. Having concerning symptoms right now, but will see my medical oncologist on Friday. I tend to attribute aches and pains to normal living
    usually and then remember I am high risk for Mets still. So back to oncologist I go. I returned to this site to research bone Mets sites after breast cancer. Having left upper arm pain for few months I originally associated with activities , muscle strain, etc.

    anyway, will check it out and pray it’s nothing, but, steel myself for dx, if it is something.
    It is still a comfort to be able to share with you all. This is my support group! You are all awesome! I wish everyone health and peace as you navigate 2024!

  • lw422
    lw422 Member Posts: 1,403
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    Hi Denise. Glad to hear from you… seems like we went through treatment together in 2021. I hear ya on the "aches and pains"; seems like I have a lot of parting gifts from treatment. I am plagued by muscle cramps and spasms that started when I was having chemo, but none of my doctors seem to be concerned. Of course, they aren't living with the damn things.

    I'm sorry to hear that you are having a scare. We all live with that stupid fear hanging over us. Is your arm pain on the same side that your cancer was? Maybe it's mild lymphedema or some residual from treatment. At any rate, I am hoping you get a good report so be sure to post when you find out anything. Take care and keep your chin up!

  • moderators
    moderators Posts: 8,185
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    Have you looked into palliative care department to see if they have any suggestions for options to reduce the side effects resulting from treatment, @lw422? While the medical oncologists vary in their concern in this area, this is what palliative care specializes in. Essentially focusing on improving quality of life during/post-active treatment phase. It could be worth checking out to see what options are out there, if any. Some side effects, like neuropathy, don't have much at the moment, but this could always change in the future. It could be helpful getting on palliative's radar.

  • deniseml
    deniseml Member Posts: 68
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    lw422 thank-you for responding. It’s always nice to hear from others going thru the same things. Saw my MO Friday and will be getting a PET scan on Tuesday. Will post again after results known.

  • lw422
    lw422 Member Posts: 1,403
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    Thanks for the update, Denise. I will say a prayer for you on Tuesday! Please let us know how it goes. Sending you an e-hug.

  • deniseml
    deniseml Member Posts: 68
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    Hi everyone. Had the pet scan last Tuesday and follow up is tomorrow. This stress is nearly as bad as when first diagnosed!
    I just couldn’t wait. Looked it up on hospital portal where test done, knowing full well this is a 2 edged sword, but I had to know for my own sanity. NEGATIVE !!! Thank-you God! Finally able to sleep. . Back to living life, thanking God every day, and making plans for the future.

  • moderators
    moderators Posts: 8,185
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    @deniseml we're sooooo happy to hear about the results! Just wonderful! 🌻

  • lw422
    lw422 Member Posts: 1,403
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    Oh, what wonderful news, Denise! Thanks so much for letting us know. You must have the biggest smile on your face today!

  • hopeful2020
    hopeful2020 Member Posts: 80
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    Hello - I posted in another forum but got no response. Hoping someone can help me with IBc symptoms. I was diagnosed with IDC in Sept 2020. Had chemo and radiation and was all fine. After two mammograms in the last 8 months for various reasons, my irradiated breast is very swollen and hard and firm. While all along I was told it might be lymphadema and was going to physiotherapist for same, my breast surgeon suddenly is all concerned about a recurrence. I am waiting for my MRI results still, I saw my radiation onc from a different hospital today who provided some preliminary results that she doesn’t see any masses or lumps but skin is very thick. The mammogram and ultrasound in Dec was normal and showed thickening of skin only on the side of radiation. I am now concerned if this might be IBC or Fibrosis. I do see some orange peel like skin at the bottom of the breast, feels a bit warm, and some needle pins from time to time. Breast is swollen. Does IBC start like this? Or progress like this? Anyone have IBC after IDC? Any input would help until I get the MRI results back for which they probably will ask me to do a biopsy.