IBC lounge: roll call, support and just a good place to hang out
Comments
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LW422, I was one-sided for a year until I had DIEP recon. It was incredibly annoying. I felt like I had to wear a bra with a prosthesis all the time just to look normal, and I hate wearing bras. I found the silicone breast form was heavy, hot, and sweaty. More than once I forgot to put it in my bra and realized, after reaching my office 35 miles from home, I'd left my breast at home in a drawer. On one occasion it slipped out of my sports bra and bounced down the sidewalk. If I hadn't had DIEP on the books and had only opted for a unilateral mastectomy I would have been banging on my surgeon's door to get the other one removed. But we're all different!
My mom had a unilateral mx and was actually thrilled when the other breast turned up with cancer a few years later, so she could get it removed and go flat. She even had revision surgery to improve the aesthetics of the scars and make her chest smooth. She looked great in the clothes she wore. No one would have guessed she had a flat chest.
In my own situation, the IBC sneaked up so hard and fast I wasn't willing to wait for the shoe to drop on the other side. I know they can't remove every speck of breast tissue but it sure makes it less likely that the "healthy" breast will pop up with another cancer later.
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Wow, now I’m seriously considering getting the good breast removed one day. All flat sounds appealing to me vs dealing with one breast & prothesis. I saw one flat lady in a t-shirt and she looked fab, I wouldn’t have guessed she had surgery done if she did not share. My prothesis fitting was an unsuccessful joke. I will consult with my BS at the 3 month mark and see. Thanks everyone for your thoughts.
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Hey SBE! Yeah, I'm already getting a taste of that "uni-boob" thing. I haven't been fitted for an Rx prosthesis but I bought a nice one from Amoena (??) or something like that. I still have trouble keeping that side of my bra from "crawling" into my armpit. SO ANNOYING.
I'm pretty sure I'll be consulting with the surgeon in 5 months about getting the prophylactic mastectomy on the left side. I really hate the idea of more surgery but I think removal of the healthy breast will be much easier (NO lymph nodes removed!!) I really have zero interest in reconstruction. My mastectomy scar is very smooth and tidy except for one end that has a little "peak" that needs smoothing. I'm not bothered by that but the PS said he can easily fix it in his office.
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I'm a uniboober.
For a long time, wearing any type of bra was terribly uncomfortable, the rads messed me up so bad. I now sometimes wear a soft Coobie bra. Most of the time I go lopsided, and no one has ever said anything. If I am going out in public I usually try to wear something that doesn't call attention to my chest. The exception is going for a hike or walk - I just don't care. I have a little cheap stuffed boob I bought at the cancer center, but I find it annoying and weird so I only wear it on some occasions.
If someone has an issue with my lack of one breast, that is their problem... The only time I would honestly care is if it is triggering for someone because they have also had breast cancer or lost a loved one to breast cancer.
I know this may sound strange, but sometimes I see large breasts and it makes me think about breast cancer.... so I have weird triggers. I didn't even have large ones - C cup when I was diagnosed. When I was younger I was pretty flat and I guess in my mind the weight gain that made me become a C cup (not significantly overweight, but still overweight) is one thing that increased my risk for cancer.0 -
LW422, stretching arms, hands and practicing reaching behind your back on the mastectomy side will help a lot to keep your range of motion. Glad you have some time off appointments and deciding what you will decide to do mastectomy wise as well.
My wigs are paula young which are what they call cool caps. I have never found them hot, even in stinkin hot summer weather.
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Blue--I agree about the comfort thing; that is my main objective. I go without a bra a lot because it's so dang uncomfortable to wear one. I couldn't care less about what other people think. My remaining breast is a "D" so I need support on that side, but it's just annoying trying to deal with bras.
Hope you're doing well these days. I honestly don't think about a recurrence which surprises me. I figured I'd be terrified by every ache and pain but I guess now that I have "faced down the devil" I don't think about it much. I know it's always a possibility but I guess I'll not worry about it until I have to!! Take care.
Mara--thanks so much. I do stretches and exercise every day. Things are s-l-o-w-l-y getting better and I'm grateful for that. How's the walking going? I admire you for keeping so active.
I'm glad you found wigs that work for you. Right now I'm thrilled to see my hair coming back!!
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Hair. It's such funny stuff. When we're young women it represents beauty to many of us, and as life happens, it assumes less of an important role in our self-image.
I had stick-straight hair all my life. I actually enjoyed my chemo baldness. I could be in and out of the shower, dressed, with eyebrows drawn on and everything, in twenty minutes. When it came back in it was almost white, with beautiful soft curls, and I loved it. My stylist warned me it wouldn't last, and it didn't. It grew back into the stick straightness, a mouse grey. I went back to dying it blonde.
Fast forward a few years and I retired from my full time, public-facing job. I let it go grey and I love it. It's almost silver now. But here's the miracle...last summer I went swimming with the grandkids and didn't have time to blow dry my hair, so I just left it alone. IT WAS CURLY. Beautiful soft waves, ringlets in the back, the whole works.
I have to laugh every time I catch sight of my curly self in the mirror. Life can still throw us happy curveballs.
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That's nice sbelizabeth. The bio hair I still have brown close to black naturally. My preferred wig colour of the last maybe 6 wigs is a mix of very light blonde, a darker blonde and brown roots. I do keep the sides of my bio hair slightly longer on the sides in case I wear it in a style that folds behind my ears, looks more natural that way.
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Mara, I looked up the paula young wigs. They're really cute! I liked the blonde with brownish roots color. Looks just like mine used to when it was time to see the colorist!
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Hi everyone,
I need to vent, feeling deflated, sad after meeting with my Onc. WBC went down again, it was up after chemo/surgery then down last two draws. Doc is adamant it's not keytruda (drug website says it is one of the side effects), radiation might contribute to it but started going down just before starting rads. Doc does not think it's rads either.I wanted to skip keytruda today to see if that was it but doc strongly opposed. I'm hoping it will go up again after rads. If it does not go up, doc will do bone marrow biopsy!?!?!!! Thanks for listening. I trust my doc but also frustrated. Nutrifils are ok.
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Hey Mamacure. OMG, I wish I could give you a hug; how frustrated you must feel. I wonder why your doctor is so adamant that the Keytruda isn't causing the low WBC if the manufacturer's website says it is a known SE?! This was your last Keytruda, right? Hopefully things will start to turn around now that you're done with it and you won't have to have that bone marrow biopsy. I didn't have any blood draws during rads so I have no idea whether it affected my blood numbers, but I assume not.
I read on the rads thread that your chest is getting red, bless you. I'm so sorry you're having a bad time of it right now. Take the weekend to rest and spoil yourself a little. Big hugs and positive thoughts for you.
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I am so sorry about your WBC going down and also the resistance of your MO to listen to your suggestion. Did he explain why it would not be an option to skip a Keytruda to see if WBC rises such as risk of growth etc? My feeling is to ask again, also ask why is he adamant it could not be keytruda lowering WBC.
Docs have the medical knowledge and job experience of treating us but I will say that we know our bodies. He should make it clear his position on the matter and why he believes it is not lowering and unwillingness to try to skip it once and see if it improves. Docs need to meet patients in the middle so that ultimately treatment is benefiting the patient but listen if the patient is not in agreement instead of shutting them down.
Ultimately it is your body and if you choose to skip the Keytruda, that is your choice, make sure you know risks of stopping for a dose.
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Thank you LW & Mara! I worry myself crazy.
Stupid me, I was the one who brought up my trending down WBC point. I even showed MO the drug website with the side effects of keytruda. I think she doesn’t want it spreading during radiation since no PCR. She dropped the scary bomb that 1% chance thatAC chemo will cause leukemia in the bones. She had 2 cases in 12 years. I can’t stop worrying but will do best to stay calm. I was worried about starting xeloda now this, hope it’s nothing & I won’t have to do the biopsy.
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Mamacure--of course you worry; we all get it. This cancer stuff is scary business. I don't think much of your doctor for telling you about the very slim possibility of leukemia. You need positivity from your doctor for Pete's sake.
Since the Keytruda website says that a low WBC count is a possible SE, I'd just go with that. I feel so bad for you and I wish I could help you to not feel so anxious. Take care.
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Hi Mamacure,
I know it is frustrating!
I have a vague recollection of my MO pointing out that some of the side effects on the drug mfg website can be misleading because of the fact that the drug in question is usually given in conjunction with chemo, and with some drugs it is actually the chemo that is causing the side effect, but there is no easy way to demonstrate the chemo is the culprit and not the drug in question so they have to list it. My guess is that is the logic your MO is following.
What other treatment are you currently on? I know it was quite a while before my WBC count returned to normal.
Hugs!
Blue
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Thanks so much for the support LW & Blue!
I’m feeling little better now. My rad techs said during & after rads, our cells are rebuilding so we feel tired & prob low wbc too. I’m only on keytruda now so that plus bolus everyday probably did not help with wbc. My energy if pretty good, walking most days.
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Hello all and I hope everyone is doing well. Mamacure, you should be done with rads, right?? YAY!! One more hurdle cleared! I hope you did OK with it.
I'm about the same; still whining about tightness, nerve pain, armpit discomfort. I was hoping by this time (4 months since surgery) I'd be feeling better but it mostly still sucks. I do have good days and bad, though.
Today I had my first "downer" day in a long time. Since treatment ended I have been upbeat and feeling optimistic emotionally, but my 1-year-since-diagnosis anniversary is looming. In some ways it seems like only a couple of weeks ago, and in others it seems like centuries since I had a "normal" life. Or maybe it's just normal to have a few "what if" days that are scary and sad.
Anyway, boohoo, poor me. I hope you all are well and happy, and looking forward to a very Happy New Year. Take care.
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LW422, just popping in to say it is completely normal to have those what if days from time to time. You have been through a lot and though I have never had the experience of an end of treatment, I can say that I used to experience the same feelings after finishing each treatment I have had. After almost 7 years since first diagnosis, I don't feel dark days from cancer very often, my brain switched to worry when something happens, otherwise cancer is going fine. Real life keeps tossing me stressful things to get over instead so my dark days usually dwell there.
The longer you go from treatment, your brain will still go what if, worrying about recurrence etc but the longer you go, the less that will happen and it will move more to the back of mind as you get on with life in general.
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Mara, I’m also seven years from diagnosis, so we’re bc twins. I remember when you told us about your brain mets five years ago and I’ve since marvelled when you turn up here to support newbies. Your survival is nothing less than a beacon for us all. I want to also report that Lori is doing well. I have a lot to do with her on Twitter.
LW, Surgery was the worst of the experiences for me and since you are just four months from the op, hang in there. Your one year anniversary will Ben a real milestone and I hope the boohoo changes to hooray.
Mamacure, Finger’s crossed your WBC pops up. Rads are a drag to recover from. Hey for the energy and walks.
Happy NY to all the crew here. Stay safe everyone.
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Mara--you are so kind and supportive. Seems like when I need a boost you are always there to provide it. Thanks so much for your positivity and kindness. I hope whatever stressful things real life is throwing at you will soon be resolved and you won't have any dark days to contend with.
TravelText--thanks. You know, surgery was the hardest thing for me, too. (AC was a very close second!) For whatever reason I am surprised by that; so many posters in the surgery threads claimed that surgery was a "piece of cake" and "the easiest part of treatment" that I honestly believed it. I suppose the actual surgery wasn't so horrible, but all the after-effects are truly miserable.
I'm glad to hear that Lori is doing well. I did not get to know her since she left before I arrived, but I have read a lot of her posts and admire her very much. Ask her to check in here sometime.
I appreciate everyone's support and positivity this past year and I'm hopeful that all of us have many, many more. It is hard to believe that it's been a year already.
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Hi LW! Yes finished my rads yesterday! Overall, it went smoothly. Boosts were easy. Skin is not bad. Glad that chapter is over. My worst out of all was the chemo. That’s why I am dreading Xeloda. Sorry to hear about the nerve pain & discomfort. I hope they resolve soon. My lymphedema is manageable & I’m not as worried about it anymore. It should get better now that I am done with rads too.
Mara & TravelText: Always helpful to hear your perspectives, please check in often.
Wishing everyone Happy New Year
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Hey Mamacure! So happy that you're done with rads and I hope the Xeloda goes well for you. I know you dread it. I'm actually doing OK; just have my moments of whining and still a bit resentful of this entire mess.
Take care and happy new year to you.
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Lw422, TT and everyone, I hope the next year is a good one for us all. Thank you as well for the kind words as well.
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Hugs and happy new year, Mara.
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Happy New Year to you as well. I am not one for resolutions but if I am going to work on something, will be my depression, getting back to walking after my nasty fall a couple of weeks ago and just taking things easy. Worry more about stuff going on right now versus in the distant future.
Hope everyone here has a good new years as well, may it be filled with non cancer, good thoughts and days for you all.
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Happy New Year everyone, thank you for every single post here!
LW - I was just doing the dishes & wanted to log back in to say visualize positivity & happiness. You literally crushed it this year. PCR & zero neulesta shots during your AC — amazing!!
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Hey Mamacure. Yes, we have a lot to be grateful for... we're still standing. It's been a hell of a year, though. The bright spot has been finding this place and all of you amazing people. I don't know how I would have managed the whole thing without all of you and your gracious help and support.
I hope you have the best year EVER ahead and that Xeloda will be easy for you. Do you know when that will start yet? I'm keeping tabs on you and Serendipity09. Take care.
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New Year's Eve, 2011--ten years ago today--I was two weeks past my first chemo and rapidly losing my hair. In 2012 I would finish chemo, have a unilateral mastectomy, slog through 38 radiation treatments, do chemo again (xeloda and navelbine), and start letrozole. It took a lot of navigation and it wasn't fun, but apparently it saved my life and I'm tremendously grateful.
For those recently diagnosed and enduring treatment, just in the ten years since my cancer was found, new drugs and treatment protocols offer even more hope.
Let's have a great 2022!
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wishing a happy and peaceful New Year for everyone! I am most thankful for this site & especially for this thread. I thought, in the midst of COVID that not having in person meetings/ support groups was the worst. This thread and the support all of you offer is better than I could hope for! Thank-you ALL for being here for me in the past 16 months! You will always hold a special place in my heart.
Finally living my life again with minor interruptions for health related issues! BC no longer occupies my time or mind every moment!
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Denise ML, so glad that you have been able to move on from the cancer being on forefront of mind. That is just freedom and you deserve to enjoy.
Believe it or not, cancer really does not worry me as much as real life issues and I have to work on not worrying anything that has not yet happened. Once I can do that, life will be much better.
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