Starting Chemo, November 2013 Group
Comments
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my sister took a photo of balding me and my kids decorating cookies. Had her post it on my Fb page so people can see the new look and get over the initial shock in their own way. For some reason I'm just preferring naked head.
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i prefer it too Quirky. My head was never hot with hair but is with hats. I hate them. I was shopping at a local,store and finally whipped my hat off. I ran into a neighbour and could tell they were uncomfortable. I almost put the hat back on but didn't. It is so easy being bald.
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I complain like a champ about the SE's that I DO have, but I consider myself extremely lucky so far. Will be seeing my onc's nurse practitioner tomorrow (onc is on vacation,) and I'm going to see if we can't just go ahead and assume that my pattern of spiking a fever and developing bad mouth and throat soreness exactly one week after infusion will hold, and plan some medication for that ahead of time. I mean, I'm armed with three different meds for nausea and have only been truly nauseous ONCE so far, so it just kind of makes sense to medicate for the SE's I *do* have.... We'll see how that goes over.
Tonight I am TIRED! We held our family's Christmas gathering today, so it was a long time from leaving home til getting back home tonight. A good time was had by all, so we'll count it as one of our better Christmases.
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Hi Everyone~I'm STILL here but just barely able to sit up and read...posting is difficult but I DO have everyone on my mind and in my heart.
Doing a bit better, as this day, Monday is day #6 post-chemo and per last cycle, the day I start to "see the corner" and "begin the turn," ie: feel semi-human again. Pretty much had the same set of side effects and symptoms per Cycle 1 with one episode of up-chucking this time (like a mini-vomit...sorry for the details) after taking a bite of some type of peanut toffee stuff. I hadn't eaten much...cannot remember the day...and I woke famished. So I grabbed this stuff, inhaled it and it apparently didn't sit well.
I'm so happy to see others are doing so well. We will get there ladies. For those of you who can, get out there, enjoy the day, enjoy the Holiday, enjoy your children, spouses, families, friends...simply enjoy your life today!
It saddens me to read that people feel invisible out here. No one is invisible, not in my eyes...and I do not think anyone is invisible in ANYONE ELSE'S eyes, either. It's hard to keep up on all the info and all the people out here.
I, too love to give back specific replies to people and their concerns. Sometimes it's simply hard to keep up on details and post back in a personalized way.
I know northwinds had chemo a day or two after I did and we are on a similar cycle...I think you did Cycle #3 and I just complete Cycle #2 Could really relate to your side effects and your husband's concern about taking you to the hospital. You sound about how I've been feeling...and I am NOT able to receive Adriamycin along with Taxotere and Cytoxan...can only imagine. Take it slow, rest, please feel better, one-day-at-a-time.
jab...nice to see you out here again
veronica...please do not ever feel guilty about anything, certainly not feeling well! I ENJOY reading all the posts, even if I don't post back frequently...I try when I can.
Virginia hang in there...we are with you. Some folks have connected differently than others on the thread and that's just the way it goes with this cyber-stuff. Please don't feel left out.
wallymama...you make me laugh...I shouldn't be gripping about the husband...he is trying so hard, he really is
Have Gayle aka ellischestnutgirl on my mind 'cause I know she is ill with infection...was supposed to have her port and TEs out today...hope we hear from her
hugs to everyone else...amazon, Melrose, smrlvr, BigT, ellen, Paulette, PatAlameda, Bec65, audra, lisa, inks, wrenn, phebe38, quirkygirl, bluegrass...hugs to anyone I forgot!
Uggggggghhhh...gonna go back to reading & lurking ladies...tummy is feeling upset as I try to stay on top of my fluid requirements. May need to ingest a Compazine
Hang in there, everyone! You are in my thoughts.
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hi all the big girl chair today. was down for the count last few days...hope to read up and talk later!!!!
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Sending prayers and good vibes to Gayle as well for her surgery!
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Feeling so much better today. Oh, not 'normal' (I think I remember normal), but better. Sure hope Gayle did ok today. As if everything else isn't bad enough, poor thing had to have surgery to UNDO surgery. So not fair.
Smrlve, hope your travels are safe uneventful. take it easy and have a great time with your family.
tonilee, glad you're feeling a little better. Don't apologize for the 'mini-vomit', everything goes here, remember?
Amazon, has your weather cleared enough for you and your son to get out any? Sort of cold here but not too bad. I have been able to sit on the back porch a bit today. Just to watch the dogs chase squirrels. But hey, every little thing helps.
Lisa, glad to here from you and that your family Christmas was so good. The MOs need to just listen to us about our SEs. Who cares if 90% of people get nausea, if your problem is fever rather than nausea, then medicate for the fever.
Quirky, Wrenn, I'm loving the bald head so much I believe that my hubby is sort of afraid that I won't let it grow back. When I mention how much I like it, or how easy a shower is, he just stares at me. And Wrenn, good for you. If your neighbor was uncomfortable that was on her, and certainly no reason for you to feel out of place.
Melrose, thank you for your words of experience. Right now it's hard to believe that things will ever again be normal. I keep wondering if I will think cancer every time I have a problem, will this hang over me for the rest of my life? But you give us hope. Hope that one day we will be right, and able to look at a future that doesn't scare us.
Hope EVERYONE has a calm, quite, restful day with no SEs to bring them down. Wishing everyone the very best Christmas they can have!!!
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hi all...haven't been able to read and catchup yet...driving home from round three. so far so good but you know how that goes. I did what the share something that really helps anemia....its called H EMAPLEX you get at health and vitamin stores. my red went up from 2.5 to 3.26 in two doses....will read how yall are doing and touch back later. prayers and
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Hi,, ladies. Thinking of all of you, where ever you are in your chemo cycle. I am having foggy brain and can't remember. I hope all of you are feeling well and that Gayle does well today.
I felt much better today. Not normal, but well enough to go out shopping and make Christmas cookies with my girls.
My daughter is making dinner so I can relax.
Thinking of all of you, my chemo sisters.
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We were finally able to get out of the house today. We went by car to do some shopping and experienced the aftermath of two days of freezing rain: roads covered with a thick sheet of ice, broken trees and branches everywhere, neighbourhoods without electricity, intersections without lights, closed shopping areas, but hey, at least we were able to stick our noses out the door for a while.
My nurse came today to pack and change the dressing on my wound. Actually, there was nothing to pack anymore, since the wound closed up already. I feel that it is still quite tender, though. Fingers crossed it will continue to heal.
I am going to see my MO tomorrow. We'll see what she has to say about my next chemo date.
Aunt Flo popped in for a visit today just in time for Christmas with the usual presents.
I hoped she would forget where I live, but no! She has a darn good memory and didn't want to miss this opportunity! I think I want to change my address so she wouldn't find me next time round.
Gayle: I have been thinking of you throughout the day. I hope that you are doing OK. You will get through this. You are in my thoughts and prayers. (((( hugs))))
Wallymama: I also like the fact that my hair washing is now a breeze and my hair drying is just a quick wipe with a towel. Overall, I find that the hair issue doesn't bother me as much as I originally thought it would. Although I like to wear something on my head all the time just to keep it warm. I find scarfs great for that purpose. I wear my wig only when going out, so I wouldn't freak anybody.
However, two days ago I had two of my colleagues visiting me at home. I happened to share with them my new look minus the head covering. The first reaction of one of them was that of a shock when she saw my sparse stubble. When she recovered from the initial shock she quickly added a compliment that I do have a 'nice round head'.
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Amazon, I got a similar reaction a couple of weeks ago. I was staying with friends for a "mini-vacation" in their gorgeous house, and was packing my things in their guest room. The phone rang, and the husband came to the guestroom door, and I opened it without thinking that I didn't have a hat on (I don't normally wear anything except when cold when I am alone). He did a double take, and like your friend quickly recovered to say how nice I looked. I think it was a shock to both of us.
My looks have never been my strong suit, so the hair loss hasn't affected my much. I am kind of fascinated to see the stubble growing a little bit, and seeing that I have some dark spots. Wondering what color it will come back. -- Ellen
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gonna write in a bit on the decade in high...gonna use it!! bought three gifts ...first ones! had them slow the drip.....last time the Nazi nurse pushed EVERYTHING IN 1 1/2... NO WONDER I WAS SICK from day one. my neulasta delivered tomorrow along with iv toradol for pain! continuing daily iv fluids! a Godsend!!! ALWAYS HELPS TO PERK ME UP. it flushes the crap out quickly! ! sometimes we do it twice a day. if u are having hydration pbms get MORE to prescribe. will share more in a bit plus some interesting stuff! huggs to all...gayle special huggs!
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Hi everyone,
Trying to stay caught up.....
Amazon, I'm glad you were able to get out, even if it was treacherous.
Tonilee, I hope tomorrow is better!
Smrlvr and Wallymama, I'm glad today is better!
Paulette and everyone else in the BGC today, I hope your SEs are minimal.
Gayle, I've been thinking of you today and hoping things went well.
Ellen, I'm wondering what color my hair will come back too. The stubble that I have left has so much grey! I've highlighted my hair for years; I guess it was really masking how grey I'd become.
Everyone, good vibes!
I saw my MO today for my pre-chemo appt. All systems are go for my first Taxol on Thursday. Yay? I'm sticking with dose dense as long as I can handle it. She said aches and pains should be worse than if I did weekly, but neuropathy should be less. I guess I'll find out! I have February 5 circled on my calendar as my last chemo, so fingers and toes are crossed.
As it turns out, I got the hand/foot syndrome SE from AC, but only in my hands. I thought it was just winter dry skin issues, but now it's obviously more. I didn't realize it (b/c I never compared them to anyone else's), but the palm sides of my hands are REALLY red. My MO's hands looked shockingly white next to mine. I definitely have been feeling the tightness and swelling, and also the major cracking and peeling in the creases of my finger joints. So, I'm off dish washing and fish tank cleaning duty for the duration (drat), and I'm to keep them cool and heavily moisturized until they get better.
I would love a glass of wine right now, but I guess a cup of tea will do. I'm saving my ration for Christmas.
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Praying for Gayle! Hope surgery and recovery going well!
Everyone sounds a lot better! Yay!
Paulette- did you Dr recommend or ok the hemoglobin supplements?
I am wishing I had same side effects as you all...seems I feel ok first few days and then it hits day 5 or 6 til yesterday which is day 18??? Just tired that whole time....not counting neulasta pain and other ailments during the tired phase....
wishing you all well chemo sisters!
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hi tomorrow is my #3 chemo and my port is not healed. I put cream 1/2 hr before blood work. I was really uncomfortable when she gave me the needle. She couldn't find the spot so she was poking around on the sensitive area. I hate needles. She ask me if I want to keep it on I said no. Then she said put the cream on 2 hours before chemo. Make sure you put a large amount. Coming to the city I cry a lot for my hair. My husband said is the sun bothering your eyes. I got mad and told him how much I hate being bald. For me my hair is very sensitive so I like wearing tourbans. I also have a wig but I can't wear it. I just bought a partial wig and I like wearing that. When I go somewhere I wear it along with a nice head scarf. I very emotional this time around. I hate this port. I know it will heal eventually but it's taken it sweet ol'time
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hi tomorrow is my #3 chemo and my port is not healed. I put cream 1/2 hr before blood work. I was really uncomfortable when she gave me the needle. She couldn't find the spot so she was poking around on the sensitive area. I hate needle. She ask me if I want to keep it on I said no. Then she said put the cream on 2 hours before chemo. Make sure you put a large amount. Coming to the city I crya lot for my hair. My husband said is the sun bothering your eyes. I got mad and told him how much I hate being bald. For me my hair is very sensitive so I like wearing tourbans. I also have a wig but I can't wear it. I just bought a partial wig and I like wearing that. When I go somewhere I wear it along with a nice head scarf. I am cry emotional this time around. I hate this port. I know it will heal eventually but it's taken it sweet ol'time
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Hey everyone....please dont take this as thoughts not from my heart...if you desire to hear more I will gladly give it with love! We are all at a very hard point in our treatment. Some have had hard roads...myself included. Others feel that they are unable to voice an opinion because they may cause hurt in those who are hurting. THese thoughs are given in love!
For whatever its worth I would like to share a common
problem that we all share as human beings in overcoming the battle with our
thoughts and minds. Generally we tend to become ensnared in what I call the
“WOULD HAVE, COULD HAVE, WHAT IF’S and WHY ME” of life. No one can ever believe
that difficult situations would come upon them but when they do it seems that
at times our minds become our greatest enemy.We spend countless nights endeavoring to figure out “WHY ME
and IF ONLY” to explain why such difficult things have come upon us. Most times
there is absolutely no definable reason why these things have occurred. Whether it is
sickness, disease, accidents or calamity there is generally no reason
why such situations have befallen us.What seems to be a common thread in humanity is that our
minds become our greatest enemy. So often one has sleepless nights thinking
about the past and worring about the the future. All to no positive effect!
When we allow our minds to overcome us we can become our greatest enemy!Many spend sleepless nights as the thoughts of “If only
I….If I could have…I should have…What if ….and Why me” rattle through our
brains. There is an endless stream of thoughts poring through our minds, as if
somehow it could change things. The fact is that we cannot change the past and
for the most part what we are enduring has ABSOLUTELY nothing to do with the
situation we are endeavoring to overcome at the present!Day after day we go through difficult situations and look at
others who we think have no difficulties. The reality is that everyone has the
same battles. Perhaps they have different names but the bottom line is that no
one walks through life unscathed! Everyone has difficult battles, though we may
not see it! We may thin that some have silver spoons in their mouth and never
have insurmountable difficulties. The truth is that we all have battles. The
Key is how we hand the battle in our mind! Our mind can be either the greatest
allay or the worst enemy. If we allow our mind to overtake us , it can totally
sabotage us in all our efforts!The importance of taking every one of our thoughts captive
and aligning it to peace cannot be understated. Our peace will only come when
we begin to maintain a thought practice of living in the “NOW” . When we allow
our minds to carry us into the past and dwell upon the negative situations and
thought patterns, we will be plagued with guilt and condemnation. If we allow
our mind to control us and carry us into the What ifs of the future we will
loose out on seeing the beauty that resides in the present!Our power remains in our ability to NOT allow our minds to overpower us in the what ifs...shoulda couldas ...and every other horrible thought that comes upon us during trials and tribulations!
How often have your EVER had those nasty thoughts come true that you have spent LONG countless nights and grueling horrific days REALLY come true! It is torment!
Stand firm in the peace that lies deep in your heart...especially during this holiday season and enjoy your life...enjoy your family and KNOW that the outcome rarely is a bad as your imagination! Despite what presently appears to be in front of you!
WIth LOVE,
Happy Holidays! Huggs to all!
Prayers for the best of health and futures to EVERYONE! Enjoy your NOWS!!!!!!
T're!!!!
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Pheobe....I will be sitting with you in the chair tomorrow! Make sure they slow down the drip! It sure makes it much better for the day! Hoping for the following as well! My port is finally feeling better. I actually have to have a needle all the time because fo the daily fluids.. Make sure you put the cream on hours before and cover it up! Reapply is frequently and in volume! It helps! Also if you have any pain meds or anxiety stuff TAKE IT!. If you do not like the person who stuck you last time ASKI SOMEONE ELSE!
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As far as the hair goes....the longer I dont have hair the more jealous I am of the guys! Now it takes me minutes to take a shower and run out the door!!!! I take my makeup with me and apply it on the way....WHAT A COOL CONCEPT! FOr the first few weeks it was SOOO odd...I would stand in the shower feeling like I was missing something....and after because it took me FOREVER to do my thin hair with a fortune of produces..then I stepped outside in Florida weather and all my efforts went SOUTH...! generally do not wear wiggs. They are totally hot and itchie! I have found that if I have small band with cool decorations they are soooo comfortable. Yes...I miss my hair at times...but the freedom I am gaining with not having to deal with hair at the moment is actually kinda neat! In time we will have our hair back...but for now have fun! Get hair bands, hats, or whatever! Got to the craft store and get BLING BLING....flowers and whatever! Jazz them up! Be differant and enjoy it! It is a real charge to have people look at you and at first be perplexed...but then they come up and say COOL!
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Wrenn, Amazon...you are starting to understand! Hairless can be cool!!!!!Audra...yes my doc did recommend the HEMAPLEX...and it really seems to work for the amemia...I am beginning to feel much better and was surprised how quickly the red count/hgb etc raised! My head is much clearer as you can see. I know part of it if from the steroids...as it also helps my autoimmune/lupus etc problems!
I spent sunday...a total zombie. Couldnt wake up for the life of me! THe whole week was like that. Worse than ever. My counts kept dropping and found out they generally dont transfuse till your hgb count goes below 7...but when it drops below 10 many people are symptomatic with ringing in the ears, dizzy, lethargic,...etc...It hit me bad. I tried the HEMAPLEX first...and it did wonders!
I get hit bad from about day 3 plus this..dunno...first time I rebounded the last week. I did not do well from day one on the second time but I really think it was NAZI NURSE dosing me so fast. TOday I REQUIRED they slow it down and I feel pretty well so far. I know it is only for a time but at least I have a few days to recoup before the neulasta and other drops. My doc warned me that my counts will most likely drop faster and longer this time. Especially with my co-morbilities. Many of the meds I must take do not react well to the chemo meds. It takes longer to jump back...but I will endevor to take my IV daily fluids...which are great by the way...even though I have to keep the needle in all week!
At least I know 'NN" is NO LONGER on my case. We kicked her off!!!! YAHHHHH!!! I have my favorite on all the time!
I had a wonder total body massage today as well. Did wonders!!! If you have available...DO IT!
Another funny thing happened......Im sitting there....half way into my 1 hr 15 min PER dose today....had to peepee....got up and said...ummmmmmmmmmm.........the floor is all wet....so is my purse.....and um.....the IV tube is not hooked up!!!!!!!!!!!!!!!!!!!!!!!!!!
We found out that someone did not hook it up! THe floor and my purse got half my chemo dose!!!! THey had to scramble with gloves, special cleaners, gowns and all and clean up the mess!!!!
Well my purse and the floor will be cancer free!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I think Ill sit in that chair for the remainder! I KNOW it is TOTALLY clean of bugs!!!!!!!!!!!
I am gonna write in numerous posts because I am reading back! Ill write for a bit...don't feel slighted if I dont get to you yet! I have thought of you all but have not even been able to lift a finger to type. One more day of decadron energy...then pray for me!!!!!!!
Gayle...how are you!
Huggs to all!
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Bec what is hand foot syndrome? I think I have had that for a while...I also have raynauds....my poor finger tips are splitting open and my hands and feet are red, old looking and dry...like they are sunburned. My feet are burning with neuropathy pain like a ((#&%&#*($&#(h.....adding to the injury from 2005 incidents. I look at my hands now and feel like they are a hundred years old! I had not looked that up before!
I was glad to see numerous of us FINALLY got out today. I was a bit frustated at first...left chemo and was hungry. Asked for the childs menu...which they abliged...but when I ordered fish nuggets with fries...they cooked them in soooo much oil it DRIPPED off them. I had to leave before I got sick. I did not want to hate one of my fav places! Im glad I did not wait around for their "remake" because my hubby said they messed them up just as bad.
I didnt let that kill my mood! I went shopping for the first time and bought a few gifts! Though I had my purple gloves in toe...along with an ample supply of anti-germ gel!!!! I didnt wear a mask this time...but will in a few days! Not taking any chances...since my counts drop QUICK! I know today I was ok...but still watched and listened for the horks and snorts of people! I do not touch money or stuff without gloves right now. So far so good! I really don't give a freak what people think!
When my RN hubby and I go out to eat we go earlier...when less people are in the restaurant...ask to be seated AWAY from others and if anyone is sick....get someone else to help us! EVERYONE has been great!
I even special ordered my favorite sushi....NOT RAW...made without roe on TOTALLY NEW clean supplies! with fresh ingredients! They did it!!!!!!!!!!!!! mmmmmm!!!!Forgive my rambles...but I have wanted to talk but my brain and fingers just could not do it till tonite! Hope it give hope to some of you!
Huggs
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Bec....enjoy your ration at christmas...I doubt very seriously it will cause any harm to take a small sip now and then! lol!
And the hair color....that is also an interesting question for me! Last medical crisis...I ended up with curlier hair! Odd since mine was iron board straight before!!! A real blessing! I call it a heavenly kiss...what I always wanted! looking forward to a NICE SUPRISE again!
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Amazon...so glad you are healing well!!!! Praying for the best!
Well I wont bore you ladies any more.....for at least a little bit! I miss talking to you! I
I think Im gonna listen to the wind roll across the trees bringing the cold front out way. Was WAY to hot and humid today! Gonna get a little cooler weather for Christmas! A 80 plus degree holiday just doesnt do it for me!
Huggs and Love to ALL!
Gotta do some more catch-up reading!
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smr, inks, wren, virginia, toni....NW, jab, wally...lisa, quirky and all....hugss and prayers! Hang in there toni....forgive the short names...my fingers are hurting...gotta type more to yall later!
BTW....all you cookie momma....send me some cookies! havent been able to do them myself this time! just putting my hands in ANYTHING burns. I wanna do cookies!!!
Any way...Enjoy them!!
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Also...melrose,,,big t...bluegrass...and anyone else...my brain is getting fried and I have overcooked yours! Keep on laughing! Im with all you ladies later today and the day after christmas! Was there today myself...just make sure they SLOW DOWN THE DRIP! makes a BIG DIFF! headaches like NOTHING today. Well tomorrow is neulasta....
and thats a WHOLE new story! Keep smiling and remember STAY IN THE NOW! turn off your brain! sing a song, pray, go over your whole body piece by piece and concentrate on relaxing! watch a movie...DO NOT THINK! BRAIN OFF!!!
Huggs!
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also for you northerns freezing with snow.....dont laugh when us Floridians laugh or desire a bit cooler weather for Christmas! what I would give to have a white Christmas! Having 80 to 90 degree weather for Christmas doesn't cut it! Lol! Hugs for you with the snow blowers!! Remember us when we have the sand bags with the Hurricanes! What I would give to have a white Christmas! PS no headache tonight with the slow drip! Yea
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anyone interested....im trying to upload total shaving of my head! rather funny if you want to see send me an email so I can link it!! didnt know hubby videoed it all!!!
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this was less than 24 hours after starting to loose my hair.....
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sorry I monopolized the nite but I thank God yall are sleeping when im getting rained on in Florida and its getting rather chilly for Christmas! !!! happy holidays and restful sleep!!!!! big smiles!!! im on the night watch....wet and all!!!! sleep for me now so you can laugh at me!!!!!Buffett and naked head wet! loving it!!!! huggs!!! see what happens when yall dont talk! I chat to myself! too funny in the cold rain w my puppy going potty!! you gotta watch my u tube of getting buzzed for a laugh!!! ok.....maybe sleep.....oh yay but almost time for more decadron. ....sleep.....lol! gotta catch up for to much anemia sleep! go buy the hemaplex. ...it helps! MORE recommended it! now time to hook up to rx fluids with my trusty iv pole for our nightly dance!!!! later....dont laugh too hard unless you need to! which most of us do!! huggs again and many prayers for all who post and all how lerk! if u lerk.....jump in the pond......we WILL embrace you!!!!! best to the BUNCH in the BBC. today my heart is with you for the best! Remember. ....SLOW DRIP!!!!
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goodness....the sun is coming up...roosters are crowing...and ..no sleep...temp dropping...rain dripping.... and yall are either thankfully sleeping or getting ready for the BGc....either way IM WITH U IN SPIRIT!!!!! funny how when im up and going yall are quiet!!! always been my life on the night watch!!!!! happy Christmas eve! anyone have favorite christmas reciepes to share!!!!! one of mine is chrishinkies polish cookies!!!
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