Putting On That Happy Face!!!!
Why do I feel like I always have to put on that happy face????? When all I want to do at times is curl up in cry!!! I am so tired of people saying you look so good! All I want to say is you know what I don't feel good! Or you must be so happy this is all behind you. WHAT??? I live in fear everyday this is going to come back, I have permenate nerve damage, I just finished with Herceptin weekly, I am on Tomoxifen, and a big you know what needle that gets stuck in my butt every 3 months till I have a hysterectomy, never mind all the joint aches and hormonal flares and lets not forget the 10hr surgery I have up coming for a Diep. God get a clue. But I just smile and say Thanks!!!! Sometimes I feel like I am going to explode. They think once your hair grows back that your done!!! They don't want to hear about all the other stuff we all need to go through or deal with, we are suppose to go back to normal.
We just did a huge benefit for one of my goodfriends who was just diagnoised with BC this past week-end. We live in a small community but we raised 35,000.00 for her and I could not be happier for her. I had a few people come up to me and say "Does this make you feel bad cause you didn't have a benefit?" God No it does not bother me. #1 I was asked if I wanted one but declined thankfully. But I can't believe people have the gall to even ask me that. I was their for my friend and I am so pleased that we raised that much for her cause she is really going to need it. But some people just don't think before they say something.
I just want to let everyone know and I really wish I had the guts to do it but I know I never would, that NO my journey is not over or will it ever be over for me and my family this has changed our lives forever! I will be in TX for the rest of my life thanks to my hormone status. And I will have reminders for the rest of my life thanks to Chemo. I will live on numerous pills for the rest of my life.And I hold no illussions that this won't come back due to my stage and diagnoisis its not never its just when!!! But I will be the one on the street with that smile that says yes I am doing good!!!
Thanks for letting me vent!!!!!!
Bridget
Comments
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Bridget, I know I'll hear from others about this post, but here I go. One of the reasons I have not gotten a reconstruction is the fact that if I have to live with my cancer every day, so should those around me. My flat chest is a constant reminder to those who "think it's all behind me". My breasts are not going to grow back, so next year, they will still be missing. I get very little feedback this way as people just don't quite know what to say! They can't exactly criticize me....except one guy I used to work with said I should "wear a falsie, breasts are part of a woman's shape". Oh, I agree! But, I don't have any!
The other reasons are physical and financial, but I admire those that can brave their journey. In no way am I saying to do it my way, just that this way, people are constantly reminded, just like me every day....
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Bridget and barbe, I think we all get frustrated with people who think once the worst of treatment is behind us, we are "all better" and "back to normal". I think that mostly people mean well, they just don't get it. I don't know if you CAN get it if you haven't been through it. Our lives will never be the same. Everything has changed for us. Our bodies have betrayed us and we will always be looking over our shoulders.
I think people say some of this stuff because they don't really know what else to say. they are just trying to say something to alleviate the awkwardness they feel or maybe, if they are nice, to make us feel better.
Cancer scares the heck out of people. I think the people who act like they think life is back to normal for you, hope against hope that it is. If they are your loved ones, they can't bear the thought that cancer could come back any more than you can.They are just trying to push that possibility away. For acquaintances and such, they know if you got cancer, they can get it too. They want to believe you can be cured and then just merrily go on with your life, because that's what they hope would be possible if they were in your shoes.
Angela
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You are all so right!! My problem comes from my own family. I went through the bilateral mast and chemo with flying colors. I was a "brave girl". After the initial shock of diagnosis and the many, many tears, I just did what I had to do and tried not to upset the family routine. That was my big mistake! Now, I am just supposed to be just like I always was, but I can't. I can barely keep up with my job. I don't sleep well anymore at all. I am just so very tired. I honestly don't feel good. I am tired of chasing the American dream and worrying about "what I look like". This whole experience has aged me beyond belief. The lines in my face are deeper, my hair is thin, and I look like Uncle Fester with the circles under my eyes. I am no longer the multi-tasker that I used to be. If I do one thing and I do it well, I am pretty darn proud of myself. But, every day, I get up and trudge through the day smiling as if none of this matters. I wear my foobs so that I look like I have always looked. And, I hide behind the false smiles and the false boobs. Some day though, I may just lose it and let everybody know that I am not what I appear to be.
I think back to before I was diagnosed, and no, I do not think I would have understood all the emotions and body changes that happen with a cancer diagnosis. That is why I still come here almost three years out from diagnosis. You guys get it! I can validate my feelings and know that they are real. I can be among my own kind, so to speak. I do get so tired of pretending everything is okay all the time.
Cheryl
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Bridget:
You are not alone in your frustration with people who do not want to see how dramatically we change after treatment. A friend of mine always focuses on the mastectomy thing..when that is the least of my personal issues. Losing the sense of being safe in your own body, losing the full use of my hands due to lymophedema: those are the things that are not possible for me to shake. A therapist told me yesterday that shaking these feelings is probably not the way for them to take a better place in my life. I know I can't go around as angry and frustrated as I have been, every time a person makes a comment on my mummy wrappped arms. My favorite this week came by way of an older woman who held a door for me in the mall: " looks like somebody has been beating on you!" No ma'am, but I could give you a smack or two........
No answers here, just letting you know that you are not alone and that your post made me feel less alone tonight in all this mess...
Moogie
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Moogie, you nailed it! People tend to focus on the visible changes and not the inner pain! No one know what we feel like every day wondering if another cell is changing into cancer. Wondering if our bloodstream is taking a cancer cell to another organ...
I know anyone can get cancer, but we've proven that our bodies already know how!
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I too get frustrated by people's insensitive, but more often, simply unthinking comments. I also live in constant fear that it will come back. So I "get it". But here are some of the things I try to do to get me out of the ugly place.....
- Yes it may come back, but truly odds are better that it WONT than it WILL. I think we all feel like if our bodies betrayed us before, it can and will happen again and we are going to be prepared this time by thinking the worst. BUT that doesnt and wont help us - all it will do is ruin today with fear. So what I try to do is live like it MAY not come back and allow myself some HOPE. The worst that can happen is I will be wrong but that could be years from now. It makes today more bearable
- There are people with worse side effects and worse diseases than me. I think bc sucks and I hate everything about it - every reminder, every pain, all the hormone issues and pain that come along with it but I have to remind myself a diagnosis of a brain tumor (which happened to my brother in law right before I was diagnosed) or pancreatic cancer or even a heart attack or stroke and I would probably be dead right now. There are people who are paralyzed, live in constant excrutiating pain, people who are blind, burned, etc. It helps me keep it in perspective
- I dont think we can put this behind us and move on and forget it. Ever. But I HOPE we can learn to live with this as part of our history and what makes us who we are.
- As far as how to deal with others - I let them think its over and I beat it. Why ruin their day too? I am here and alive now and doing pretty darn well. If this has taught me anything, is you just dont know what the future holds for us or for them. None of them are gonna live forever either and I pray we all live a long life but for now I try to focus on today and the immediate future.
I have a friend with a stage 3 diagnosis and 5 postive nodes who is in her 10th year, I have another friend Stage 3 with 4 positive nodes who is in her 5th year. That gets me through some scary moments.
I want to live til I am 80 and I may but for now I make my plans about a year out at a time. When my kids say something about "When I am in college...." I make a concious effort not to flinch and just smile and agree with whatever they are saying. I pray I am here but if not they will be ok - why worry them now.
Im not saying I don't understand and dont feel the same way but ESPECIALLY if my time on earth is limitied - I want to be happy, I want my kids and hubs to be happy. I have watched two family members die from stage 4 cancer in the past 5 years and the best moments and memories for me, as the survivor and caretaker, have been the moments that I watched them laugh and enjoy the day and really live. I am sure they were both scared to death (of death) but they also taught me how to live.
Feel free to PM me.
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Everyminute, very sweet post and so heart-felt.
I think the point of this thread, though, was that yes, we are living and doing very well for the most part, but there are times when we both want and need a melt-down. Unfortunately we feel we must "keep a happy face" for those who don't really want to hear our fears. The people closest to us that could/should be able to give us the best support don't want to hear that we need it!
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I completely understand.
Although I'm pretty good at not only putting on the happy face, but actually feeling pretty happy. (keeping in mind of course that chemo starts May 8th) My DH however has a really really hard time, anytime I say anthing negative. I came back from my post-op appointment and was surprised that I was at a stage IIIb & his first comment was that the stage doesn't mean anything & you'll be on herceptin - I know he's scared but it's really hard knowing I can't ever have a moment to feel upset.
I also know there is a heck of a lot worse out there & I'd take this 50 times over than anything happening to a child - so it's all in perspective but once in a while it's nice to just be able to articulate the worry.
On a happier note I told him to hold on to his hat because I'm going to be complaining up a storm when I have to shave my head !
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Moogie,
I just posted a question for the ask the expert: why can't I move past this? The LE is a daily reminder and has compromised my ability to work, and I so resent the lasting changes in my life.
I think the therapist gave you good advice: I'm getting really tired of the advice I get--"This is your opportunity to make positive changes in your life." Hmm, with a swollen hand that stops me from working, hard to see the positive side. Don't diminish my grief,it's real.
My husband would like me to move on, and I'm just so stuck.
Kira
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Kira, why do you have to "move on"? I hate that term! That's like ignoring all that has happened. You can still grow and live but you'll forge ahead when you're bloody well ready! We have to mourn, grieve and all the other stages of death before we can even begin to heal.
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Barbe - I understood what Bridget was saying. The point of my post was to explain how I, personally, deal with things. Not how she or anyone else should. I find I (again just me) put things in perspective and have HOPE I am a happier person and can better deal with the stupid things people say :-)
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The emotional changes we experience are inevitable, but I do think we need to tell others what is realistic to expect" from BC news forward". I know I will never be the same. Change is natural. But when we get overwhelmed by too many changes, too quickly, I think that is where we all have the hardest time.
Kira: The positive changes in your life " spiel": it is not helpful to anyone in grief or adjustment from my point of view. It places a burden on the person struggling to simply slam on mascara and get out the door without a major meltdown. I am trying to make a map of what in my life has changed without " my choice" and what I would like to change in my life " having choice". Getting out some markers and a big sheet of butcher paper. Going for broke and listing outlandish possibilities with realistic ones. Firing up the stereo, pouring a glass of something good, and seeing what results. My hope is that finding just one thing at a time I can "take charge of" and change gives me some power back." Loss of power" is rough for me. I feel like a deposed dictator......Give me something I can control!!!
Moogie
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Moogie,
I wrote in this writing class I'm taking : "If this is my new lease on life, then I want to sublet."
Last October, I was reading this Oprah magazine, filled with stories about women who found that bc enriched their life, and I hurled it across the room. No pink vacuum cleaners for me...
Moogie, I think the markers and figuring out what you have control over is genius. I struggle with loss of control as well.
Barbe, thanks--I'm obviously still grieving and having a hard time--especially with a LE flare that has me spending my evenings wrapped like the michelin man--finding this an opportunity to create a new life. I was kind of okay with my old one.
Thanks for understanding.
Kira
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I don't know if I'm going to be able to articulate this very well, but here goes. HA! First, I acknowledge that I haven't had as scary or life-changing an experience as so many others have, but I certainly have had my times of anxiety and fear and resentment and... I also get comments about how well I handled things, and thank goodness it's all over. Well, I DID think it was all over after my first bout of DCIS but here I am again with a new diagnosis, with all that implies.
Here's where I'm going to have trouble making sense, I think - I think it's only fair for our loved ones to really understand our journey. And the thoughtless or clueless can use some education. So I try to be open about what really is going on in my head. If someone says, "Gosh, you were so brave," I gently say, "Well, not always...." and then offer some insight for them. Just a quick statement, not a lecture. Then if they want to honestly talk more, we do. If not, we move on.
I don't want to wait till I'm all pissed off and take someone's head off. I want to keep my own sanity by being open and honest. And it's also true that I like to be acknowledged when I do manage to be strong. But I think it's OK for others to see that there is a price with all that.
And at bottom, I kind of want people to know what it's REALLY like in case, god forbid, it happens to them. So that if THEY feel they can't be brave and upbeat all the time, like I supposedly was, that's normal!
And honestly, I don't want to have to be responsible for keeping everyone else's spirits up ALL the time. Mostly, yes, I do want to keep IT from leaching into my home life. But there are days I need to be very real with my husband, and he just has to go there with me (and I must say, he does - he's been so great). And I need to be real with my sister, because our mom had BC, too (18-year survivor!), and my sister may be next. (Hell, ANYONE could be next; a friend of mine was dx with Stage 1 IDC a week after my last dx.) For her, I definitely want to demonstrate that you keep on going despite the fear. It's working for all of us thus far. I don't make it All About Cancer very often - but when a dose of reality from me is appropriate, I provide it.
Certainly those who say, "Thank god it's over" WANT it to be over, because they love us and they are frightened for us, and for our kids, spouses, parents, friends...and themselves. But they need to know. I'm not one to be comfortable breaking down in front of someone but I AM OK with opening up and sharing some of my internal journey. So I like to do that in bits and pieces along the way and not bottle it up. I believe that, for me, it's beneficial - and they can learn something, too. And if someone can't handle it that,honestly, is not my problem. I had to get tough; they can, too.
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I am telling you some people are so unbelievable it is just hard to put it in words how disgusted I was. A person came into where I work which is a restraunt and in frount of a few people he asked me if I had become a dyke do to my short hair!! That I am so proud to now have. You want to talk about a ignorant SOB!! I was so shocked I could not say anything for a minute till he kept going. People sitting around him whom know my situation were shell shocked. Not only was it a rude comment to me it was also towards gays and lesbians which his wording was out of line. When I said know I was not and that I am still married to my husband . He goes on to say well I just don't understand why you would cut your long blonde hair, I had decided I had enough and people were very uncomfortable. I said well you know what I just gone through Hell for the last year and a half due to CANCER! Thank-you very much. He is such a ignorant person he didn't even have the senses to say gee sorry about that, he made the lame excuse he thought I was someone else. He is a recovering alcholic but I am thinking he needs to start drinking again cause man he has no class!!!! I live in a very small town and I find it hard that he had not heard but I am chalking it up to another one of those Putting On That Happy Face!!!! Cause he is the jerk and I am the survivor!!!! But boy people can come out with some winner's!!!! I thought once my hair grew back to a good length I would not hear about it and life would go on! Now its rubbing my head and asking me why I cut my hair or Oh My God Your Hair Looks So Good!!! I am starting to say back yay it does and I have worked real hard for every strand on my head!!!
Okay phew got that vent off my back!!!! Sorry about that but that was bad!!!!!!!
HUGS-Bridget
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Bridget, that scores at the top of the outrageous scale.
Good for you to tell him why you cut your lovely hair....
Kira
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I had someone stop me this am and said "I havent seen you in ages - I thought you died or something"
Um, no.
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Holy cow, Bridget! I'm glad you went off on the guy. What a tool.
And just in general, why do so many people think they have any business commenting on ANYONE'S appearance? Strangers, yet? Rhetorical question, but these things just flabbergast me in general.
"I thought you died or something" is also ...amazing.
Just sitting here shaking my head...
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Hi ladies! This is such a great post. Thankyou for starting it.
Bridget,
I had such a clear picture of what you went thru. I was a waitress at the same place for 12 years in a small town. I didn't have cancer then, but one of my very good friends/co-workers did and I saw what she went thru. The STUPIDEST things come out of people's mouths sometimes!
everyminuet , what do you SAY to that?
"Um....Diid you want me too?"
Holy Hannah!
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I know someone famous (George Barnard Shaw or Samuel Clements, someone) said "The rumors of my demised are greatly exaggerated." I mean, what do you say? How about, "sorry to say, still kicking."
In Lisa's blog she writes "Of course they're fake, my reals ones tried to kill me."
Having a heart attack and deciding you are going to take better care of yourself is positive change. What are the positive changes that stem from having breast cancer? There aren't any. You survive it and go on - not the same, certainly not better (you don't have a part of your body). Hopefully you do survive it. Grieving is certainly involved - and grieving takes the time it takes and part of the grief never goes away.
Someone who had a leg amputated would not be told such silly things. Why is a breast(s) any different?
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Moogie,
I have been doing a lot of crying this past week. I do not know how to "move on". I have to say, I had a good (knowing) laugh when you talk about slamming on the mascara! I went (almost) bare faced to therapy this morning so my therapist could see how I really am feeling. I ALWAYS put on a happy face in front of others outside of my family.
Maybe if we were not told that we WILL always worry about recurrence, it might have made a difference for our emotional well being..then we could feel the happy face we try to put on. Most of us will really live to be old ladies...why should this fear factor be planted into us?
Anyhow, thanks for causing me to laugh!
Saltwater-cowgirl
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Here comes another one that totally drives me crazy!
My stepmother who had bugged me every week to find out what I was doing or going thru next by the way via telephone and has senn me once since I was diagnoised but she is so nosey and did not want people to think her and my dad were not involved with this journey. OKAY!!!! Where have you all been???? So she calls me after my last Rads and proceeds to ask me a million question's and I was definatly not in the mood to listen to her so I kind of spouted off at her and she tells me "I have to stay POSITIVE "!!!!! F-you is what I wanted to say. But instead I told her know I do not have to be postive everyday to beat this I was a positive person before this happened and so had alot more good women and we still got BC.And if I wanted to not be positive then I won't be. She is so numb the next time I talked with her was Xmas which was 2 months later and she goes oh its so nice to hear you talking so positive again. I really wanted to wrap my hands around her throat and say did you not understand anything about this whole thing. I still have not seen them! Nice stop calling and don't visit with your daughter cause it might make you uncomfortable. TOO BAD!!! My life goes on whether they are in it or not!!!! And yes I am happy with my life and yes I do have days I feel down but who doesn't!!!!!
HUGS-Bridget
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I know I keep posting this, and this social worker did the recent web conference, and I'm looking forward to reading the transcript: but I think this nails the whole "positive thinking" issue.
reebird: Can you cause your cancer to come back just by being afraid that it will?
Answer -Rosalind Kleban, L.C.S.W.: I am glad that this question was raised, because I'm sure that is on the mind of the majority of people. It is a very popular notion in our culture today that if you have a positive attitude you can get rid of your cancer, or that you never get it or that it doesn't return. If you think about it, that notion is truly an oxymoron. An oxymoron means two things that don't go together-like "jumbo shrimp." The reason I call it that is to think about telling somebody what is the worst news of his or her lifetime and then ask them to be positive just doesn't make sense. Having bad feelings and down days is neither good nor bad-it's just normal. The only people we ask to have a positive attitude at all times are people who have had cancer. I can be miserable all day long and nobody is going to reprimand me about being positive. You only 'have' to be positive if you have cancer.Having that philosophy or notion or belief is like living in tyranny. What it does to you as a patient is that on days that you are down or depressed or sad or anxious or worried-which is normal-you will feel even worse because you have accepted the notion that those are bad feelings. You need to work hard to get rid of that notion. It is not fair. It is putting a burden on the patient, while it serves many good purposes for the people who are saying it. If you are going to be happy and positive all of the time, then I don't have to worry about you. It also leads me to believe that if I am positive I will be fine. The philosophy serves everyone except the patient.
You need to know that people will tell you that you need to be positive. You need to be prepared in how to handle that comment coming at you, and that is something that you want to do in a way that is comfortable for you. What I think works is that when someone tells you to be positive, suggest they walk in your shoes first. And inform them that when people speak to you that way, it's really not helpful. You need to protect yourself as much as possible from that theory because it is burdensome and hurtful. A bad attitude will cause only one thing and that is a bad day. The best reason for having a good attitude is that on that day you will enjoy yourself. But neither the good nor the bad attitude will affect the illness. It will affect the quality of the day that you are having.
Your fear is just the natural outcome of having this diagnosis. It will not cause the cancer to come back. I work with a thousand women a year and I have never met one that doesn't suffer from fear, either enormous or very enormous. It's normal. Not bad, just normal. It will have no impact on the course of the cancer.
http://www.breastcancer.org/symptoms/understand_bc/fears/ask_expert/2002_06/question_04.jsp
I have a friend (?) who told me that she couldn't handle my "negative vibes"--so don't. All I would like is a bit of support--like "It must be tough some times." Yeah, and having to pretend that I'm not effected by any of this is a burden all by itself.
Kira
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I never did accept that "Be Happy" philosophy of if you think positive thoughts, positive things will happen to you. It is stupid and it is definitely NOT true. I know a ton of good people that have lots of bad things in their life and obnoxious people who seem relatively carefree.
I don't think anyone has said to be "it must be tough sometimes." It would be most appreciated.
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If someone says "be positive" to me, I say "I AM POSITVE I HAVE CANCER!" That usually shuts them up!
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Hooray for barbe!
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Good answer Barbe. Another one that someone in chat told me to use is, "I'm positive it feels crappy to have BC." I tried it and she was right, it shut the offender up very quickly.
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I love the article that Kira posted above. I'd read it before when she posted it earlier, but it does make so much sense and says it so clearly. Thanks again Kira!
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Thanks for all the great lines, and the understanding: I am positive that this is difficult, so most times, especially right now, I can't see the bright side of it.
I was teaching with a psychologist, and I said to him: do we ask prostate cancer patients, who may be incontinent, or impotent after their treatment to be positive and see this experience as an opportunity for personal growth???
Kira
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...and he said?....
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