IBC lounge: roll call, support and just a good place to hang out
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Hi all and thanks so much for your responses. My scans are tomorrow, wow even just typing that made my heart start racing. I know everyone here understands, and on one
hand I hate that anyone does, but am also grateful we have this ability to connect with each other.Mara- I like the idea of having a 2 week rule before worrying. I’m going to try my best to follow that advice! Since I finished chemo I feel like I’m just sitting here twiddling my thumbs waiting for surgery while any potential remaining cells are in there having a field day. It’s hard for me to sit back and wait, I like to get things done and check off boxes and move on. I need to learn to be more patient I guess.
LW- Thank you for the kind words and encouragement. I hope you’re feeling well and moving on from having to deal with this nightmare. Since you had pcr have your doctors said how much that lowers your risk of recurrence? I hope you never have to deal with any of this again!
Mamacure- congrats on the good 6 month checkup! I hope your lymphedema improves with time. My SO hasn’t mentioned anything about a sleeve to me yet but I’ve been wondering about that. I just found out the PT I’m scheduled to see pre-op is leaving 2 days after my appointment, but there's an OT there that is also certified in lymphedema therapy, now I’m wondering what the difference is (if any) between a PT and OT as far as lymphedema management goes? Are you currently on xeloda? My MO mentioned that as a possibility but I’m also looking into the ASPRIA trial if I qualify.
Thanks again and hope everyone else is doing well
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Hey MC. Nice to "see" you, and I'm sorry you had a cry yesterday... but sometimes those tears are a tension-reliever. I have my 3-month check with the MO next week, and my 1-year mammogram on the "good" side on the 19th. I'm not particularly nervous about either of those but that may change as the appointments get closer.
So you are wearing the LE sleeve all the time? I hate that for you. So far I'm not noticing any changes in my arm/hand other than some joint stiffness. In fact, since my treatment ended it seems like I have a lot of joint pains that I didn't have before treatment so I'll discuss that with my MO. I guess my biggest dread other than recurrence is lymphedema. It recently hit home to me that even though I had the lymph bypass procedure, I'll still never know whether it was effective or not. Since we can get LE 10 years after treatment... how the heck can they even quantify the results from the surgery? Anyway... I've decided to not waste time worrying about something I can't control.
As far as pCR goes... that is wonderful to hear, but after treatment ends it does leave a person with the "I'm on my own" feeling. As a TN, there are no other treatments indicated for me. I don't get scans or AIs or anything, which is kind of scary (unless I have pain or something that needs investigating). Although I must admit I'm glad I don't have to take more meds or treatments it is a bit disconcerting.
I hope everyone is doing well. Check in and let us hear from you!
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LW, you don’t have to get any scans at all other than annual mammogram? Wow wow I like that. My annual mamo came back clear!!!! Very dense tissue so I will be vigilant, since just finishing cycle 5 of xeloda, I figured it would be. I absolutely hate drinking that liquid for CT scans so I hope I can endure it. They gave me 2 bottles last time & I can only drink 1. I don’t want to ask but figure they will scan me after xeloda & every 3 months to start. I wear day time sleeve starting after breakfast and put on bulky nighttime one right before sleeping. I take it off middle of the night or at dawn when it gets claustrophobic or hand gets numb. Funny how you get used to it but it will be hot during the summer months & a pain to wear long sleeve shirts with it.
Mara, I’m curious what your normally eat. Please share when you can. Thanks everyone! Love hearing from you all.
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Becky--my apologies; I meant to answer you about the pCR and recurrence rates. I believe it does lower the risk a bit but early on I decided I did not want to hear about prognosis, recurrence rates, etc. I had scared myself senseless after googling about IBC and was convinced that I was dying. Thank goodness I have a doctor who looked me in the eye and said, "you are not going to die." Of course, he had no way of knowing that, but it really helped calm me at that time. Since then, I avoid any IBC stats and any discussion of life expectancy or recurrence rates... because it only upsets me and I want to be done with "upset." Hugs to you; you're going to do great!
Mamacure--so great you got a clear mammo!! How many more cycles of Xeloda do you have? Sorry you have to deal with the LE garments; do you have much swelling? Cancer is truly the gift that keeps on giving.
Yep, that's correct. No treatment, no meds and no scans. I just see my MO every 3 months unless I have a problem. I'll see the RO on the same day I have my mammogram, and I'll see the plastic surgeon next August to get a small place on the end of my scar revised and smoothed a bit. That has to wait until a year after my surgery and I'll have to have permission of my MO to cut into the scar. It's a simple procedure that the PS will do in his office... just a snip and a few stitches I believe.
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Scans done yesterday and results came back right away, all good! Met with my MO right after and she reassured me that clinically I’ve had a great response, so now we wait and see what pathology shows after surgery. Less than 2 weeks to go!
Mamacure- I had to drink 2 bottles as well for the CT. First one was awful, tasted like plastic. Little did I know I could’ve requested a crystal light packet to mix in and it made all the difference with the second! Maybe they offer something like that where you get your scan done?
LW- I totally understand. I wish I could not focus on the numbers so much. I know it doesn’t do me any good, so why waste time and energy on it. I’m trying to embrace any positive news and hope for the best… easier said than done sometimes.
Hope everyone is having a great week!
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Oh, Becky... what GREAT news! My after-chemo scans also showed great improvement but I still held my breath until the surgical pathology was back. Everything's a waiting game with cancer. Surgery's not too bad, though the drains will drive you nuts and I imagine it will be difficult for you to not scoop up a toddler for a while. You'll have weight restrictions on how much you can lift, especially while you have drains. I just know you are going to do fine. Thanks for updating us; we're all cheering and praying for you.
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I’m with you LW, I don’t want to look too much into stats as everyone is unique & I am here to fight. I have 3 more Xeloda cycles to go. My wbc really improved, negative test on stomach infection plus clear mammo, I finally got some good news for once since this awful journey started. Yay. If I forget to wear my sleeve, it swells moderately. If I compare 2 arms side by side, left one is slightly larger. Also felt more swollen after a plane ride but not bad
Crystal light is a good idea, I’ll ask for that Becky. I’ll be thinking of you for your surgery. Hugs.
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I'm with the don't look into any stats deeply, whether it is recurrence, survival or anything else. It is usually older data not taking into account a person's health or any underlying issues they may have and not know about. Everyone is different anyway. Day by day is best.
Mamacure, I mostly eat things like black or pinto beans and chickpeas. I sometimes like white rice served with them or I also like to add a beefless ground to them. Usually add a sprinkle of wheat bran for a fiber boost. My seasoning is what makes the meal taste different along with how I prepare them. I use canned beans and sometimes microwave the meal until the beans explode or I fry the beans in a pan or if I want slight crunchiness, I bake everything. No more than a cup in total though. Because I layer I have to be conscious of calories. I like to add all sorts of seasonings like sloppy joe dry seasoning or a garlic parm seasoning. Italian or everything bagel, maple bacon or taco seasoning. I put a spoonful of either mayo or queso to bind everything together. Usually will chop up different veggies like mushrooms, spinach etc as well. I am not adverse to eating meat but I do like all the vitamins some of the beefless ground or vegan meats have and they are usually lower in calories as well. I am not nor would I really consider myself a cook but because I have a smaller core group of foods I like, seasoning, veggies and even the rice keep it different all the time. I have also thought about buying a packaged noodle dish and instead of using milk and butter to make a creamy pasta, boil the pasta I want to eat, save the rest for later and using the seasoning that comes with to flavour beans.
Enough of me and what I eat, I am glad that people are progressing through treatments and moving on with life as it should be.
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Thank you Mara for the detailed look into your meals. I enjoyed reading it. Beans & rice sounds good & nutritious. I realized how I was over eating before my dx. I try to eat smaller meals now & stop the constant snacking. I’m reading ‘Eat to Beat Disease’ and eating broccoli, apples, spinach, sweet potato, a kiwi a day, etc. but also eating enjoyable things too. I crave pasta with tomatoes, capers & olives (puttunesca). I got tired of beet juice, celery juice, I prefer blueberry & banana smoothie. I still love carbs. Croissants, toast, bagels, etc. hope everyone is doing good.
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Hello everyone! Hope you're all doing well. I don't check in as often now since the website is all putzed up.
Mamacure--I need to start focusing on more healthy foods but I sort of adapted the "life is short; eat the cookies" mantra after treatment ended. I always wanted to learn how to bake good bread and make artisan loaves, so I have been indulging myself and spending lots of time playing with my kitchen toys. It's really fun and I have learned to make decent breads! Of course I stepped on the scale today at my checkup and have gained 4 pounds since February... oops!! Guess I'd better hang up the measuring cups for a while!!
Speaking of my checkup; it went well. I've been having a weird nerve pain or something in my "healthy" side but my doc doesn't seem concerned about it. He did a physical exam and said everything looks and feels normal. I have my mammogram next week so I suppose if anything is going on in there they will see it (hopefully). I'm feeling pretty good all things considered.
Becky--only a week till your surgery! I imagine you're getting a little anxious; seems like the closer my surgery date came the more nervous I felt. Do you know whether you'll spend overnight in the hospital? Some patients go home the same day as their surgery nowadays. I'll be checking on you to see how you're doing, so check in when you're able.
Mara--I hope you're getting the repairs made on your apartment. I know you've had a lot of annoying things going on.
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Just 3 days until surgery!
My surgeon usually allows patients to go home the same day, but since I live about an hour away she wants to keep me overnight just in case I have any issues, and I’m ok with that. I am anxious but looking forward to just getting it done and over with, and moving on to radiation!
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Hi sbelizabeth .I havent been on here for a very long time as a couple years after my breast cancer my dear husband got glioblastoma which has no cure-he went through pure hell before passing away 18months later. I couldn't get back on here - I felt over whelmed by cancer and put this site as well as the brain cancer site I was on when he was still with me, totally out of my mind. Today however I noticed my yearly oncologist appointment is next month and I was researching Arimidex after 10 years but saw nothing. Then I remembered this site and thought Id look on here as surely out of our 2012 groups I wasn't the only one questioning going off it and sure enough I found this post with you questioning taking letrozole after ten years. I swear I have been thinking exactly the same for a year now since my oncologist mentioned that I would be able to go off of it in 2022. I told him I don't want to go off of it and he said there were no studies for longer than 10years that he knew of. He promised to research possible pros and cons and said we will discuss it in June in 2022 when I go back. So I'll let you know how that goes-let me know if you get to go on year 11.
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Becky--I'll be thinking about you tomorrow and keeping everything crossed for an easy, successful surgery for you! I know you'll be dealing with a lot this week so check in when you can. Take care and my best to you! Big cyber hugs.
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2friedeggs, just wanted to offer my condolences on the loss of your husband.
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Becky--thinking about you today and hoping you're feeling OK. I imagine you are quite sore and dealing with drains; hopefully all that will pass soon and you'll be on the mend!
I had my first mammogram today since my diagnosis in January 2021. I was nervous but it came back clear... so yippee!! Also saw my radiation oncologist for the final checkup; she said everything looks great. I'm very thankful.
Hope you all are doing well. Check in and update us.
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Mara51506, Thank you for your kindness & condolences- they are much appreciated.
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Nice to meet you, everyone. I'm joining this forum proactively. This morning I noticed a nickel-sized red rash-like spot on my right breast. My left breast has been tender for a few weeks now. I emailed my gyno with a picture of the rash, and her nurse called back telling me to come in first thing Monday. I googled my symptoms and found IBC, so here I am. I'm trying not to freak out, but I can't stop looking down at the red spot and anticipating what's in store for me.
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Hi there and welcome, FraidyCat! Hopefully you won't have IBC and won't have to stick around for long! IBC is rare so chances are good that you don't have it. That said, my original symptom was exactly the same... a pink "bruise" on my breast about the size of a quarter. Thankfully I never got any of the horrific symptoms that you might see if you google IBC... so please don't Google. (And if you do, stick to websites such as the major cancer institutes for the latest information.) I'm glad you are getting in to see your doctor ASAP. I hope you'll let us know what you find out on Monday, and my prayers and best wishes are with you. Take care.
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fraidycatgirl, Welcome to the group. Ive been here eight years and have seen so many people come here with your symptoms only to have their fears allayed after a clinical examination. Keep us posted.
PS, ignore my crazy signature, this site's forum has been broken for months now.
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Thank you so much lw422 and traveltext for the kind messages and hope! I'll definitely keep you updated and am thinking of you both and everyone here.
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fraidycatgirl, definitely stay off Dr. Google. I never had a bruise, the skin under the breast had thickened, regular doctor had felt it and sent me. By the time it was diagnosed, my breast had started resembling an orange peel. Still, symptoms can be lumped together. Once you have more information with testing, the better you can be but until them, stay off the google and even if you do wind up with IBC stay off the survival stats. Go day by day in any event. I hope you do not have it too and that it is some kind of benign issue as well but know that if you were dx, it would be scary but is also very treatable. Always, deal with the next thing in front no matter what, whether cancer or life in general.
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Hi everyone, just wanted to post an update since having my surgery. Unfortunately it seems as though a nerve in my shoulder/arm maybe was over stretched during the procedure (that’s what im being told) so I’ve been dealing with a lot of numbness and tingling down through my forearm to the tip of my thumb. I have a lot of weakness and can hardly lift my arm/flex at the elbow. So I’ve been wearing a sling, doing recommended exercises and will see PT in a week, probably be referred to a physiatrist as well. Aside from that, I also got a call from my surgeon yesterday, my path report came back. What we thought was going to be very little to no residual turned out to be a 0.4cm remaining tumor in the breast, extensive intralymphatic and vascular invasion, and 10 (yes TEN) out of 24 nodes positive! All of this when my breast exams appeared “normal” prior to surgery and my lymph nodes “resolved” on my presurgery CT, and multiple doctors telling me I had an “excellent response” to NAC. Talk about feeling blindsided, sucker punched, and completely defeated. I’m a wreck. I meet with my MO Tuesday to figure out what the hell I can do now. I am in so much pain, and I don’t mean from the surgery
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preciousbecky, the arm will be fixed with time and attention, but your remaining tumor needs a plan to keep the cancer localised. 10 out of 24 is an impressive score, but the nodes have been removed, remember! That puts your diagnosis at Stage 3C. Radiation must surely be on the cards. It worked following my no pCR result after chemo and my 2/23 node result. Only a full full scan would show if there's any regional cancer spread, but I'd make sure your team gets you on a plan for treating the local situation.
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Hi Becky. I've been thinking about you and wondering how you're doing. So sorry about the soreness and numbness in your arm; that "over-extending" thing happens a lot during surgery, unfortunately. You'd think they'd be more careful with us! But I suppose they have to get to things as best they can. I had numbness and nerve weirdness behind my upper arm for months but it slowly improved.
As for the pathology; please don't freak out if you can help it. So many IBCers don't get pCR and go on to have successful treatment. I'm sorry that you have residual tumor and nodes, but they will hit them hard with radiation and possibly more chemo. So hang in there and take care of yourself while healing; you've got more fighting to do little missy!!
Sending all positive thoughts and prayers for you, and of course a big gentle cyber hug. Thanks for letting us know how you're doing.
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Becky, I agree with TT, the exercises and any pain meds if you have them will help the arm. As far as residual tumour and lymph involvement, you'll get more detail. Radiation is certainly an option. Go step by step in what you handle. You have a lot going on but it will be handled. You have to start with the scans to find out info on the possible spread and there will be options given. One piece of info at a time, one day at a time, stay off of google. Treatments are vastly improved and more options than even a few years ago.
If anything else comes up through your scans, post here and I will check. I have been doing this 7 years. In your pocket showing support. Just a thing we say to each other when scans or whatever is stressing us out, imagine a pocket full of people supporting you.
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Happy to hear clear mammo on your good boobie LW!! Was that Louise or Thelma? Yumm home made bread
Becky, hope your surgery went smoothly, I wish they let me stay overnight, I just wanted to rest & sleep afterwards, nor ride in a car & vomit.
Hope everyone is doing well, Cheers Mara, TT, all.
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hi Becky, being told everything looks ok and then doesn’t turn out that way has happened to me so many times. It sucks. There will be a plan put in for you an how to attack it.
I had similar nerve issues after surgery. Exercises keep doing them constantly even when everything gets better or else things get stiff again. Things will get better hugs
D
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Hi everyone; hope you're all doing well. I'm happy to report that I'm just living life these days; still baking bread and experimenting with rolls, flat breads, etc. Last week I made flour tortillas which was fun. I'm shocked by how fast this year is rolling on by; in 2 months it will be a year since my mastectomy. Thankfully I've made it 10 months with no lymphedema, and for that I am profoundly grateful. My RO notated in MyChart.. "no indications of LE".... woohoo!! I still have random zings and tightness, and I have to keep up with stretching or things go downhill fast.
Becky--I've been thinking about you and hoping that you're feeling better. All of this is just so damn hard and I know your path report was difficult to hear. Have you discussed treatment options with your MO? Gentle hugs to you. Please check in when you can.
Mara--I'm always interested to read your on-going apartment saga and the meals you put together. Hope you're doing well these days.
Mamacure--Haha, I still have "Louise." Thelma tried to kill me so she lives in a jar in some research lab these days. (I signed over all rights to that blob of cells so they can do what they want with her.) Are you done with Xeloda now? How are you feeling these days? Will you have scans going forward or what's next? I hope you're doing well my friend.
I hope all the IBCers will check in and let us know how things are going. Blessings and hugs to all of you.
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LW, I am doing well at this point. Last MRI was fine for the brain as well as the CT scan was still no evidence of disease. Still loving laundry and food of course. My right boob was apparently incinerated after my surgery or so I was told.
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Mara--what wonderful news about your scans! That's just great.
I imagine most body parts that are surgically removed are incinerated. Since I'm a patient at MD Anderson which is both a cancer treatment and research center, I suppose they maintain a significant number of specimens for research. They asked me to sign an agreement allowing them to retain some of my tissue after surgery and I gladly did so. If some of my cells can help in some small way to help future IBC patients that would be great, plus I really didn't care what they did with it!!
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