IBC lounge: roll call, support and just a good place to hang out
Comments
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Hey LW, always good to hear from you. I guess the rule here is no news is good news! That applies to me for now! Anyway sorry to hear about the extra mammo. Good luck with it and keep us posted.
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Hey TT! Thanks for the good wishes; I'm a little nervous about the biopsy but not living in sheer terror like the first time. Hope all is well with you.
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hey there @lw422 - was wondering where you were. What was your Birad categorization previously? Sorry to hear about the biopsy. Guess just show up for it and see what it might be. Try and not to worry what the results will be. There is always an answer to the situation.
As for me, 2 rounds done of THP. Some softening of the breast is evident. After the 3rd one, will have a CT Scan. So far doing ok. Brain MRI was clear - asked for it as that seems to be the only one left to image 😀 CA27-29 was normal.
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Dear lw422, thank you for letting us know your news - what a brave human being you are! We are okay here, generally talking. Your biopsy will give all the answers but unconcerned oncologist is a very good sign. Hugs to you and keep us updated,
Saulius
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@hopeful2020 — my very first BIRADS classification was 5, but then I was "upgraded" to BIRADS 6 when I was diagnosed with IBC. Excellent news that your brain scan was clear and you are seeing improvements from treatment! Yeah!
@bsandra — thank you, Saulius. I'm not particularly brave but taking a cue from my oncologist who did not seem unduly alarmed by the calcifications. I'm hoping to hear from the biopsy tomorrow or Monday and I will post as soon as I know. I am entertaining the idea of a mastectomy no matter what the outcome; I'm tired of dealing with that "uniboob." I hope your sweet wife (and YOU) are doing well these days.
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Wow; I just got a message from MD Anderson. "No evidence of malignancy seen in the calcifications!" Hooray!!!
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Great news @lw422 !!!
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Dear lw422, yes!:) You absolutely deserve these news. Thank you also for remembering us - we are doing well, always aware, but doing well… Hugs, Saulius
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Hey @lw422, we're super happy to hear that!! 🤸🎉🎊
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Well I haven’t checked in in a while but hello everyone :) LW I’m glad to hear your scare turned out to be nothing concerning! I’m actually in a similar situation right now. Went in 4 days ago for my routine MRI for my remaining breast and got slapped with a BIRADS 4, showing a 0.5cm “non mass enhancement”. I have no palpable lump or dimpling, skin changes, swelling etc. and physical exam was normal. My genetic testing has come back negative, twice, since my original TN IBC dx in 11/2021. My SO said IF this is anything it would be something new and not a recurrence. I’m heading in today for a “second-look ultrasound” and if they can visualize it they will biopsy today, if they can’t see it they will do an MRI guided biopsy. I’m still doing Signatera ctDNA testing every 3 months and it’s coming back negative since I finished treatment in Feb 2023, so I’m happy about that but like COME ON!! I’m only 38 and have 4 kiddos under 7 right now, the thought of having to go through any sort of treatment again, my mind can’t even go there. I just want to be DONE worrying!!! Ugh.
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Hi there Becky. It's great to hear from you and I hope your ultrasound went well yesterday. Did you have the biopsy? Let us know what you find out; I am keeping you in my thoughts. Hope you are having a good weekend. Take care.
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Becky—just checking in to see if you got scan results. You are in my thoughts and I'm sending up a prayer for you. Hope all is well.
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Hi LW! Thanks for the kind words :) how are you? I was supposed to have my targeted ultrasound w/ biopsy on Friday, but ended up having to reschedule bc the hospital computer system was down due to that global software issue.. luckily they got me in first thing Tues morning. Turns out whatever they saw on the MRI isn’t showing up on ultrasound. They want to do an MRI-guided biopsy next, which unfortunately they only do on Mondays and Thursdays, and their next opening is 3 weeks from now! :( That seems like an eternity. My SO team said they’d try requesting it be bumped up sooner, and I’m on the cancellation list. I know breast MRIs are more sensitive than mammos and ultrasounds, and that they also result in more false positives. I’m really hoping this is just some fluke or benign thing, whatever it is. Seems it’s going to be a while before I get any answers.
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Back to say they bumped up my MRI guided biopsy to this past Monday and I just got the results in MYChart last night - BENIGN! They took several samples and path showed “usual ductal hyperplasia, fribroadenomatoid change (0.2cm)”. I’m so relieved and thankful it wasn’t something more. Seriously considering a prophylactic mastectomy on my remaining side even more now to avoid having to go through all this again!
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@preciousbecky23 - That's fantastic news! Whatever you decide, or if you have any questions, feel free to reach out. We're here to support you!
The Mods
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What wonderful news, Becky!! I'm so happy for you. I had a scare a few months ago and I've been thinking the same thing about the prophylactic mastectomy. Plus, struggling with one "D" side has been a challenge for me and I'm really tired of dealing with it. Let me know what you decide. I'm going to call for a consultation with my breast surgeon.
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PreciousBecky, benign is always great to hear, I cannot blame you for wanting a prophylactic mastectomy either.
Been a long time since checking in so hoping everyone here is doing well. I am still NED from neck down and brain is stable. Have CT scans once a year now since it has been 9 years of NED below the chin after mastectomy, chemo, rads to breast wall and Herceptin. Brain is monitored every three months as a pool of blood was observed in the head, not in the brain though. We are watching that, no idea of a cause and there does not appear to be any effect from it either.
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Your continued NED (below the neck) status is nothing short of amazing Mara and so good to hear. Hoping the blood issue is resolved. I had blood on the brain 20 years ago and that was a bad stroke. Fortunately the blood resolved itself. I'm always grateful for the excellent medical treatment on offer these days.
For those here who missed it, here is the article I wrote about Mara two years ago:I'm now 10 years post treatment and still NED.
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Hello everyone just checking in after a long time. Did anyone have this issue. I had cold in July and I ordered an x ray. Cough almost gone and I thought to get the X-ray still and they found “ovoid nodule projecting over the right midlung zone 2 cm new from prior”. Not sure if it means a new one 2 cm or 2 c/m from the prior that was not of any concern in 2020 about 4mm. Just getting so worried:(
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Hi Flo :) Sorry about the finding on your xray. I’m not sure what it means either. Sometimes the wording can be so unclear in the interpretations and send us into a worried frenzy! Were you able to message your care team? You mentioned your cough has gotten better, I think that’s a really good sign! A new nodule could be related to your recent infection. I hope you get some answers soon. Sending hugs 🤗
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Hi preciousbecky23 thank you. I have a biopsy scheduled for Tuesday. Good thing is only one 1.8 cm spot in the lung. They said either surgery or radiation after biopsy.
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Hi Flo,
Very best of luck to you on your biopsy tomorrow. Im hoping the procedure goes super smoothly and that the nodule turns out to be benign. It sounds like they are thinking ahead and have a plan either way so that is good. Try to rest for the next few days and keep us updated when you can. I’ll be thinking of you :)Today happens to be exactly 3 years since my diagnosis - Stage III TN IBC. Grateful for every single day ❤️
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Hi Preciousbecky23 congratulations and wish you many many more years of happiness and good health. Thank you so much.
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so done with biopsy and now waiting for the results. Guess the doctor will take it out with surgery
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Hi flo, just checking in to see how you’re doing. Hopefully you’ve healed from the biopsy and are getting some answers. Thinking of you and hoping for you!
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Hi all,
It has been a long time ago since I visited this threat, but I wanted to post a message because yesterday it was exactly 10 years ago I was diagnosed with IBC - stage 3.
There is a lot that has changed in those 10 years but I think most of them are for the best: I now have a granddaughter, I have seen my children grow up to adults and I have changed completely of profession (something I should have done earlier maybe), so the little health issues I kept from all the treatment are nothing compared to the joy to be still there and enjoying every minute of my life.
Wishing you all well,
Erica1 -
Today I graduated from "every six months" to "once a year" visits to my oncologist. Going to treat myself to a celebratory dessert tonight! 😊
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hi Friends so lung biopsy came positive for breast cancer. But luckily one solitary node size 1.6 cm so doctors said it’s oligometastatic with cure. They started me on tcp for 6 cycle and will scan again in January to see what the step would be. I was er/ pr positive 5 years ago but after surgery was mild her2 positive so did another year of HP and Nerlynx. This time biopsy showed her2 strongly positive . Doctor decided chemo HCP and said it possible for node to melt away. They will rescan in January and then posssible VATS or Stereotactic radiation. My question is as I had taken HP for one year will it work this time?
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Dear shycat, wow, amazing news, definitely worth of celebration!:)
Dear flo80, sorry for these news but hopefully the 1.6 cm thing will react to treatments well. I also thought about some local therapies, like Cyberknife, if drugs don't finish the thing off.
Hugs to everyone, Saulius
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Hello Saulius thank you and had my first THP last week and got my neutrophil count so low. Hope they give me neulasta in second cycle
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