IBC lounge: roll call, support and just a good place to hang out
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i have a question for anyone. I had treatment along time ago to my left breast lumpectomy and chemo and whole breast radiation 2 lympnodes taken out but didn't spread. Now on to now just in the last few days on this same breast it is red swollen looks very much like IBC i have put ice on it for two days now plus ibuprophen. with no good results so far. it all started when i was holding a heavy baby and pressure hurt me for a few days now and has turned red .and looks just like the images i see online and now I'm scared. if i have IBC same breast as past can i just get a mastectomy and radiation but no chemo. anyone know ? or can i still get another lumpectomy in this same breast ? and just do radiation. im so scared i wont have the streanghth to do it all over again. Im just so devitstated right now
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Ang7894, I'm sorry you're experiencing this new worry. There's no one here who can even guess what a treatment plan might be if you've had a recurrence. Typically treatment for inflammatory breast cancer is very aggressive and involves chemo to beat back the cancer, followed by mastectomy and intense radiation treatments, but don't jump to worrisome conclusions and diagnose yourself before you've seen a doctor. Please call one first thing tomorrow--maybe your breast specialist from 2011--and ask for a quick appointment. And in the meantime, do yourself a favor and stay off the internet. Constant googling of symptoms will just increase your anxiety.
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Hey Blue. Glad to know I'm not the only weirdo having phantom nipple...haha. Please don't massage yourself on Zoom!! I'm considering contacting my PCP who is at Houston Methodist to see if she can recommend a mastectomy PT that is closer to where I live. I don't see why I have to go to MD Anderson for PT and I hate that drive in Houston traffic.
Mara--thanks. You are always so sweet and helpful; I really appreciate it. I know you are having some concerns right now and I'm keeping you in my thoughts. Hugs to you.Mamacure--I can't tell you how happy I am to see the end in sight. I'm hoping my SEs don't get much worse because so far radiation hasn't been bad at all (except for the daily commute). I don't believe my bladder has shrunk, but I drink tons of water and usually wake up at night for a potty break.
Ang7894--please try not to worry, avoid internet searches, and see your breast specialist as soon as possible. IBC is rare and chances are excellent that you don't have it. As SBElizabeth said, if it is IBC the treatment is aggressive and has a standard of care that is a 3-pronged approach, including chemo. But don't get ahead of yourself! See the doctor and let us know what you find out.
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Hello everyone. Ang7894, I hope you can get seen very soon so you don’t worry too much!
I was searching for the name of my radiologist who did my dye injection in My Chart app, and came across my surgery notes. Interesting stuff! As I was reading the very detailed recap, I felt like I was transformed back to the surgery, watching them. I found out some stuff like my dye injection mapping did not work so sentinel node was hard to find. Some stuff they did not tell me. Very interesting! Orange peel skin was mentioned a few times too
Some good news Paul Allen (Microsoft co-founder) Estate donated $20 mil to the hospital that I’m getting treated at. They will focus on things like immunotherapy, patient data so that oncology is more tailored to each person, etc. I hope this helps many people.
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Hi everyone,
I also appreciate Mara’s advise! Treatment was abruptly stopped when the echo came back abnormal in July. It has not recovered yet, despite adding one more specialist to the list & 2 cardiac meds….. the price I pay to be cancer-free.
I’m feeling well, then a MRI of abdomen shows a lesion growing on liver. Worked up in January and told only “ hemangiomas “ and never known to become cancerous . So not following WHY one needs further imaging to “ r/o other etiology/ metastatic disease”? Guess this never ends.?Thankful I insisted on MRI for comparison to January’s. Hoping & praying for negative findings, though I will not fool myself…. IBC diagnosis…. Odds are not good.
finally realizing I’m in this for the long-haul! Very, very thankful for all of you ! There really is nothing better than being able to talk with others going thru same experiences! wishing and hoping we can all forget our worries & enjoy the holidays!0 -
Denise, take those odds on IBC and just throw them out the window. Yes it is aggressive and grows fast, guess what? Chemo responds very well to fast growing cancers. That works in your favour. HER 2+ sucks BUT, gives a lot of different treatment options. That also works in your favour.
Look at my stats, I have had this cancer since 2015, My onc says I was stage IV from the start, the cells were to small to see in my brain. I did the chemo/breast wall radiation first in 2015. Tumour in my brain removed 2016 with surgery and then brain radiation, spot treatment in 2018. Is it a good dx to be IBC and Stage IV. No but I am still going, far beyond how long I was supposed to live, good physical qol. I can walk for miles when I want to.
Deal with what you need to deal with, one at a time. That is all you can do, if feeling stressed follow 4-7-8 breathing. Inhale to a count of four, hold breath to a count of 7 and exhale to a count of eight. Make sure to put the tip of your tongue behind your upper front teeth while doing it. Keeps you calmer and helps with sleep too. Those help. Dont listen to anything telling you how long you have left because it does not take your specific situation into account. Treatments are far better than they used to be too. Remember and take heart from that fact.
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Mara is spot on. I'm seven years post a IIIb IBC diagnosis with no progression. Mara has had an amazing six-year Stage IV run. The method is simple, get the best treatment you can find, and try not to drop out of anything that's recommended (as hard as this s). My MO said, we threw the kitchen sink at you. I've followed Mara's cancer treatment from the beginning, when she's came on this thread and proudly proclaimed she was cancer-free from the next down! That blew me away. Mara's story is both amazing and inspirational. And remember what she says, treatments are improving all the time.
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Let me just say that I'm glad to see an uptick in activity on this thread. Sometimes IBC is a lonely DX and it really helps to connect with others who understand, so I hope everyone will continue to check in!
Today I was in the radiation waiting area (where we sit in hospital gowns waiting to be called in to the Room of Dread.) There was a loud-mouth woman sharing her cellphone conversation with all of us, though we were unwilling participants.
She finally ended the call and began quizzing the rest of us about our cancer and what treatment we've had, obviously ready to play the "my cancer is worse than yours" game. I trumped her with Inflammatory and she audibly gasped... saying "ohmigawd, the BAD kind." Guess I missed the memo on exactly which cancers are the "good kind," but thankfully I was called back to treatment and escaped further interrogation.My MO told me from the start that IBC is an aggressive cancer, but in his opinion it is treatable and survival stats are improving every day. He also said that with effective treatment our survival stats aren't that much different from other types of BC. So take heart, IBCers!
Mara is indeed an inspiration and she is always so kind and supportive. Thanks again, Mara.
Denise--I hate to hear of your cardiac issues and I hope that can be resolved. My MO has released me and I will see him on the 3-month schedule starting in February. He told me I wouldn't have any additional scans unless I developed a problem, which is kind of scary. Of course I'll still have mammograms on my uniboob but after things settle down I might have that one taken off, too.
Mamacure--I spend hours pouring over all the "notes" from visits, tests, scans, etc. on MyChart from the past 11 months. Weird that during the first months of treatment I was in such a tizzy and had no clue about the things I was going through or the "language of cancer". I was basically on auto-pilot and just showing up at the appointed time. Now I read the entries and realize I'd have been even more terrified if I'd known what they were looking for!! (And thankfully did not find.)
Have a great weekend, everyone!! I just have ONE MORE RADIATION BOOST TO GO!!! WOO HOO!
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TT, thank you for what you said. I have followed you as well since you are a great voice to remind us that BC comes after men too. I also followed you with the prostrate cancer so in my mind you are an inspiration as well. May we both continue onwards.
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thank you everyone for your support & words of wisdom! I am taking a deep breath or ten ( Great recommendation from Mara) and moving forward with my life, following up as needed .
LW: I was told the same thing… no scans unless a problem arises per MO. I was not pleased with that either. The recent scan was ordered by my PCP to follow up with an unrelated issue. Have you followed up with SO? I will be having MRI breast alternating with Mammogram every 6 months per the SO. Also bio markers every 6 months ordered by MO, “ to ease my anxiety .” Join me in following Mara’s breathing technique and let’s enjoy the freedom from medical appointments & treatment.
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Denise-- I will see the SO for a single followup and that will be it; my 3-month visits will be with MO, beginning in February. I'll still have an annual mammo on the remaining breast. Since I'm considered TN (low PR+), no AI or targeted therapies. My MO does not see the value in tumor markers (is that what you mean by "biomarkers?") except in Stage 4 patients, so I have not had them.
I am post-menopausal and got pCR so I'm pretty much on my own except for the 3-month followups for 2 years, etc. In some ways I find that a relief but in other ways it's scary. I know my life is changed forever but I'm hoping for a return to normalcy. (Not the same normal, but some kind of normal!)
I'm going to focus on exercise, stretching, and letting my body heal from radiation. I'll try to convince myself that I'm a success story!! (And then be terrified every 3 months and every random pain...but maybe that will fade in time.)
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When the umbilical cord of active treatment was cut and I was set free, I was terrified. Every lump, bump, bruise, itch, ache, and twitch became "cancer" in my mind until time, and life, had a chance to move on and settle in.
It's the elephant in the room analogy. At first, the idea of recurrence is a huge, clumsy elephant stomping around your living room, breaking lamps, flattening the sofa, making a big mess that can't be ignored. You think about that elephant all the time. Then, time passes. You clean up your living room and life settles down. The elephant becomes a tiny mouse that lives in the wall and only rarely emerges to squeak a little--with your oncology check-ups, or an innocent backache, or you hear of someone else's cancer. The anxiety still exists. It's just way in the background and doesn't dominate your day.
LW422, here's to normalcy and the elephant shrinking into a harmless mouse.
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Thank you everyone for sharing & for the great advice!
LW- you are done this week!! Way to go!! You crushed it! Enjoy your freedom & the golden ticket of PCR. Yes, sometimes it’s better not to know….you helped me in so many ways here, I’m very grateful to you :
IBC is scary but if my boob did not get inflamed, I might have not caught my BC. After a false scare via mobile screening, I did not get mamo for several years until my breast looked inflamed & lumpy. I’m trying to ignore Xeloda for now & focusing on radiation & enjoying feeling good w/o nausea & fatigue. Thank God.
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Stick a fork in me, I'M DONE!!!
Today was my last radiation (boost) and I rung the bell! So thankful it's over but I'll admit it was a bit emotional to walk out of there. Thanks to all of you for helping me along during this scary time.SBElizabeth--thanks so much; you were one of the first to "see" me here when I was first diagnosed, bewildered and terrified. You have been a voice of reason for these months and I appreciate it so much.
Mamacure--You are doing great and soon you'll be ringing that bell, too. I'm glad if I was able to help in any small way; heaven knows so many of these wonderful IBCers helped me as well. I'll be hanging around to keep tabs on you and I hope your radiation treatment goes smoothly.
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Great job LW! Wooo wooo you did it! No more treatments! Hope you can relax & take it easy!
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Congratulations LW!!! It sounds like you also tolerated radiation really well - which should make recovery much easier. (If I posted pictures of what I looked like during and after I wouldn't blame anyone for chickening out...). Make sure to keep up with the physical therapy after you are healed!
I'm so happy for you finishing and especially for your pCR!
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Hey Blue! Thanks so much; I'm kind of in a state of disbelief right now... my entire life has been cancer appointments and treatments for the past 11 months. I'm feeling like I've retired or something, but so glad treatment is done. I was actually quite shocked to get PCR; my MO said that only about 25% of IBC patients achieve it and I'm not usually in the "good news" group if you know what I mean.
Radiation wasn't too harsh; just redness on my chest and sore underarm. I understand that the SEs actually "peak" in about a week so I guess I'm not out of the woods yet.
Hope things are going well for you. You are another who helped guide me through those first terrifying weeks after my Dx, and I thank you for that. Take care.
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Hey everyone; hope all are well. I'm happy to report that I didn't fare too badly with radiation; still have some redness and itching but never had any blisters or broken skin. My armpit makes me nuts but hopefully that will smooth out in time... the tightness and weirdness under there are maddening. It's almost 3 months since my mastectomy/ALND so I was hoping it would be better by now.
TravelText--not sure how much the Mepitel contributed to my relatively SE-free rads but I'm glad they used it.
Hope all the USA-based posters will have a great Thanksgiving holiday.
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Hello friends. It's been so long since I have logged in, I'm almost ashamed to pop back on the board! I have no way of knowing who is still posting from my active days here, that was several years back. I hope everyone is doing well, I will read back as far as I can you see how you all are. Traveltext, Val, Jessie Ozzie and Kicks, plus many more, you all helped me so much in my journey! I am doing well! Still NED, and doing good. To all the newer people that are not new anymore but new to me, I hope this board and thread has served you well. It is a blessing. If someone can fill me in on some people I would love that! And Happy Thanksgiving!
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Hello Meadow. I've been around here for about 11 months now, so I haven't met you before. (I have read your posts from earlier in this thread, though!) I'm so glad you have checked in; I love hearing from IBCers who are NED! Hope you'll stick around and join in the conversation again.
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Thank you LW, and congratulations on finishing treatment! I see you are in Houston, did you go to MD Anderson? Also, did anyone mention to you and physical therapy or exercises for your tightening tissue under your armpit? I requested PT for range of motion and constricted tissues, it helped! Thanks for the welcome back to the board.
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Welcome back to the Lounge, Meadow. Many of the old crowd and a bunch of lovely new people are hanging out. Of course, we lost the talented Amarantha. How is that groov retro van going? You were five years NED, now right?
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Hi, Meadow, nice to see you! I'm glad to hear you're well. Kicks popped in for a message or two in September 2020. It's so nice to hear from people who were diagnosed long ago and are thriving. SB
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Meadow--yes, I was treated at MD Anderson at the IBC Clinic. I had a few PT sessions but I decided to postpone them until my skin settles down from radiation. I do stretching exercises and a bit of massage on my scar which helps a bit. Thanks for the suggestion.
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Thanks sbelizabeth and TT! I am so very sorry about our Amarantha. Such a beautiful soul. TT, I am 8 years out from diagnosis, 7 from end of treatment and NED. Thanks for remembering about my van! I will include pics from this summer.
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Yay Meadow! Thank you for checking in and uplifting us!
LW, if you see this, I need an update on your hair status! Sorry to hear you are still having discomfort underarms. I purchased a “Therapist Choice shoulder pulley” for $6.99 on Amazon. I use this for stretching & it has helped. Same one that my PT uses. Still wearing compression sleeve & glove/gauntlet everyday for at least 8 hours. Also, how many times did you change out Mepitel sheet? Looks like you started using it 10 days in? Thanks
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Hey Mamacure! Thanks; I have one of those pulleys and use it daily. I also got some of the stretchy bands and a PT high-density foam roller thing. I think my armpit will be better once things calm down from radiation. My RO and PT both said the radiation tends to "tighten things up."
I can't remember when they put the Mepitel on me; it was after the first week, though. The rad techs changed it every Friday for me, even though it held up pretty well and some weeks didn't seem to need changing. They checked all my marks and tapes every Friday to make sure things would stay in place over the weekend.
How are you doing? Any redness yet? I hope it goes smoothly for you.
ETA--sorry, I forgot to update on my hair. It's coming in pretty good, though it's patchy. Some sections are growing faster than others, but I'm so happy it's growing and I don't see pink scalp anymore. It's probably 1/2" to 3/4" long all over with "wisps" that are the longer length.
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Thanks LW! Glad to hear about your hair growth. Shiny bald head was not fun (but easy to wash). Thanks for the tips on Mepitel, I’m on my own with it so good to know the facts.No redness yet with 7 sessions in. Fingers crossed. I am just wearing winter beanie caps now & don’t get weird looks. Glad to get a break from wearing half a head Klingon wig + hat where my head got real hot & sweaty at times! Take care LW & everyone! So thankful for you all!
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