Am I a survivor or....what am I?
Hi everyone...I have an unusual struggle that I'd appreciate input on...My family has BRCA mutation. My dad even had breast cancer. I've been screening since 27 and started having "changes" on my Mammograms and MRIs over the last 3 years. (I'm now 37...the magic age for my family). It started wtih microcalcifications and went to enhancing lesions with recommendations to biopsy and increase screening. Screening was recommended to increase from 1 MRI/year, 1 mammo/year (6 months apart) and sono as needed (which always followed each new finding on Mammo) to each every 6 months, 3 months apart. Really? Enough already! So...when what used to be microcalcificaions showed up as enhancing lesions, that was enough for me. I did what my doctor and I had agreed upon (in a time of non-crisis) and set up the bilateral prophylactic mastectomy 03/07/11. Pathology revealed columnar hyperplasia with atypia and atypical lobular hyperplasia. My doctor told me this was basically a step before ductal carcinoma. So...whew! I got it in time! No cancer! Affirmation that indeed I did the right thing! Yay! Healing is underway...but there is suddenly a great amount of angst. My family members who were diagnosed with cancer have "rejected" me. They have been aggressive with me to the point of making sure I understand clearly that I AM NOT A SURVIVOR. First, I never called or represented myself as ANYTHING but lucky. But that leaves me all on my own here. So...I grieve the loss of my breasts. I deal with the funny looks. I am coping with the disfigurement. I am dealing with the pain. All knowing how very fortunate I am and wishing that the others...everyone...had the same chance to prevent that I did. I understand the fear...I work in a cancer hospital...I've lost family members...ones I was robbed the privilege to even know....I get it...that fear is what brought me to where I am today. But...where do I fit? I don't get to wear pink shirts and walk the walks because that is offensive to those who had a positive diagnosis...but I feel the same loss, and pain....what am I? Where do I fit? Why do I offend them so? Has anyone else dealt with this?
Comments
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Well, consider this. You dodged a major bullet. So that makes you a survivor.
Who gives a flip about wearing pink, walking as a survivor, or sporting a ribbon? Those are pretty lame "gifts" for enduring cancer, really. I purposefully took off my "survivor" cycling jersey in my last cancer ride, because I don't feel any glory about my role in the whole thing. I had DCIS, and didn't have to go through nearly as much pain and anguish as a Stage II, III, or IV victim. Yes, I had cancerous cells. Do I feel gratified to be in the cancer patient "category" of life? NO. I just want to be cancer free and worry free, like I used to be. I am me, not something that the Susan G. Komen foundation has created. Just me, wounded and grateful for life.
As for your family, you don't need any negative energy, so put it behind you. Consider yourself LUCKY to have gotten the hyperplasia out, before it had a chance to mutate into cancer. Yes, hyperplasia is a pre-cancerous change to a cell, not guaranteed to turn into cancer. But you were cautious and probably made the right move, considering your family history of cancer.
Don't buy into the hype of being a "Survivor". Save your energy for the big fight in life, and just enjoy every moment on this earth, because we are losing women each and every day to diseases such as cancer.
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I have often heard women in your position called "previvors". I am sorry your family is treating you in such an odd way. Maybe they are feeling sorry for themselves not to have been given the same treatment you had. Anyway, they will adjust.
Meanwhile, you did the right thing all the way and good on you!!! Relax and heal. You might want to check out the FORCE website (brca+ people) for tips how to deal with your family members.
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Marianna,
Thank you. And honestly, I am not in need of any designation as survivor or not...It is just the exclusion with venom by the people who are supposed to support me most (my first fail...having an expectation). I just don't understand why they discount and discredit everything to the degree that they have. And I too feel that I have not suffered like others. I just don't know how to deal with their diminishing and negative behavior. Beacon...thank you. I will check out that website. It is all such a personal and difficult experience...totally different for everyone. It is just so shocking to me to have to deal with that negativity on top of all of it. I guess...it is only negativity if I allow it into my life, right? It is kind of hard coming from my own blood...Blah. it will pass I suppose. I am super lucky. I get up and drive my kids to school every day and am thankful for that more than words can say. :-)
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It really shouldn't matter one way or another. My oncologist has always told me that you are a survivor from the minute you hear "you have cancer". Not sure why your family is acting this way. They should be thrilled that you have never heard those words.
Hugs,
Molly
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I have a feeling that everyone here is a survivor in one form of another even if they never get breast cancer themselves. There is seriously not one person here, no matter what their connection to this hideous disease and even the thankfully not personally connected who has not been incredibly helpful -- to me at least -- with every issue and question I have had over these past four weeks and some have been just nightmarish for me. That is what a survivor is to me at least: as much as someone who survives an illness, someone who conquers fear. I hope oneday to be that kind of fear conquerer!!
PS After my June Medical journey: mammo, sono, MRI, two biopsies, annual visits to every single doctor last night was la piece de resistance: I walked into the side of a table barefoot and broke my toe in two places. Well, they say it comes in threes: two b9 biopsies and one toe in three pieces. OW
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I would say you are one lucky survivor! Or lucky bastard, as some in your family are seeing you....
. That is just horrible. Why they would want you to suffer through chemo, etc is beyond me. Stay away from these toxic individuals! I wish you continued health in the future!
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I am so sorry to read this but I totally understand. There are several "previvor" groups out there and TOBY is leader on one of them...Last year was the first Congress recognized "Previvor Day"!! I was in that category, and the first MRI showed cancer so I knew what I would do but still shocking! It was soooo small. There are studies in a Social Work school at a University studying these dynamics. It can be isolating. My friend had chemo and is considered a "cancer" patient, and I had surgery and did not have chemo and I am a "surgical" patient....who the f--- cares? I take support where and when I get it. Shouldn't we be celebrating life instead? Congrat's on your dx! You have really taken the "Bull by the Horns" and caught this beast EARLY! Good for you!
One other thing...:you are a survivor from the time you hear cancer?" Those of us who carry the "cancer gene" hear it evan before! That is why i did not even get tested until my childbearing years were over
My journey but yours may be different
Here is a link for ya http://previvorsandsurvivors.com/page/2/
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This isn't something to argue about. You survived. You are a survivor. Tell you family you need their support. It's not a pissing contest. OMG they sound like 13 YO boys comparing penis sizes. Not important. What is important is you are all alive and healthy.
And you have every right to morn your loss. You gave up a lot to dodge that bullet. They should be happy that you didn't have to hear those words "you have cancer."
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MRDRN wrote:
One other thing...:you are a survivor from the time you hear cancer?" Those of us who carry the "cancer gene" hear it evan before! That is why i did not even get tested until my childbearing years were over
My journey but yours may be different
I'm not sure if this was in response to what I wrote, but my oncologist was the one who stated this- not I. FYI- I am also BRCA1 positive.
Molly
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Girl, you just plain BEAT Breast Cancer's Butt. Don't feel guilty for that. We all wish we had the same story, God knows I tried. In2006 I had a nipple discharge (very strong family history), had all the tests ordered, al neg., went to my GYN, I just knew she'd order a biopsy, well she didnt said everything looked great and just put me on an ATB for ductal infection. I just knew it was cancer. Make a long story short in 2009, diag Lobular Breast CA. 3cm, no nodes, had to do chemo, 35 rads. then had expanders and reconstruction, still need 1 more surg. to improve looks of breast/God I wish someone would have listened to me. I worked in the medical field for over 20yrs and started mammos at 25yrs old. I would have done bilat 15 yrs ago if I only knew what was to come. Believe me I was sooooo upset. You are one of the lucky ones LIVE IT UP GIRLIE/debi
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AJ251, God, if my story, or anyone else's, could prevent other women ( and men) from enduring this nightmare, that is a GOOD thing. Your story is a success story because you took precautions and they WORKED. You are still "entitled" to support and be part of this stupid breast cancer "cause."
Maybe, a family discussion is in order. If they still have issues, just go on and live your life. Pay it forward, somehow. Maybe, you can help someone else. All the best. -
Absolutely you're a survivor! You've been battling the threat of cancer for over ten years... waiting for the results of all of those tests. And instead of cancer dropping a bomb on you, you dropped the bomb on it -- a premptive strike! Just call yourself a cancer butt-kicker and never mind anyone else. They've got "issues".
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Just wondering how you're doing, my ordeal was in 2009 thru 2010. Just had Tumor marker labs today. so far so good BEST WISHES
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Hello everyone! Thank you so much for all of the support and encouragement! It is really wonderful and good to hear coming from people of all scenarios and circumstances. I noticed that I put the wrong surgery date...it was 03/07/11...sorry! I'm doing okay now...done filling and waiting for 9/9 squishies. I work in research at a cancer hospital in Tampa (Moffitt Cancer Center) and have enlisted my entire team of co-workers to start a drain pocket set up deal (we haven't figured out a name for it yet....pockets for patients or something) so that we can set up new mastectomy patients with a shower solution for the drainage bulbs as well as something to velcro them into under clothes. It was one of the biggest struggles for me on my own with this...management of the drainage bulbs. I'm also working on establishing a clothes closet to offer clean, unstained mastectomy tops with said velcro pockets and whatnot. SO...trying to do waht I can to help others. Finding ways to turn the bad into good as best I can. My family...who knows. I guess i just have to blow it off and let them do what they need to do. Even just the other day, one of them sent out a big mass email for an upcoming walk detailing those SURVIVORS in my family and not ONE WORD was made about me in any way shape or form. The isolation is what hurts the most I guess. Oh well....it will pass. Thank you all for your amazing words and support. You are an amazing group of women and I am so so sooooo sorry that we've not found the cure yet...and sorry for all that you have each endured.
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AJ251 - I feel kind of like you. I was diagnoised with atypical lobular hyperplasia and decided to have masectomies so that hopefully I won't get a cancer diagnosis. I am soooo thankful that it was caught before it turned into something else!!! But I kind of do feel left out - because not really a survivor, but did have major surgery, worry...... So previvors we are - there aren't too many of us -especially that are BRCA negative - but the number is growing. I personally think all the walks should have a special shirt for us that says "previvors", or not I don't really care
I think we made a hard choice - choosing drastic surgery when others probably wouldn't have done so. Good luck to you - keep us posted.
Hugs, Valerie
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Glad you are doing better.
We all do what it takes to ensure a long, healthy life. You got a "heads up" so you were able to act sooner. I would put you among the "survivor" group.
Loving your drains solution. I think this project will help you form friendships with new people. So important. What about "Shower Me! Post Breast Surgery Care". Because lumpectomy patients could also use this.....mine just dangled there.
One of my two sisters didn't email me ONCE during treatment to ask how I was. Not once. Forget about the phone. I am still furious.
But not surprised as she almost missed seeing our mother alive as was "too busy" to come before the very end. So sorry though. I know how much this must hurt. - Claire
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Technology keeps advancing and more is available now than when some of your older relatives were diagnosed. It will continue to advance. I LOOK FORWARD to the day when they can prevent bc altogether or cure it by smelling a lovely perfume or something like that. (I can dream, right?)
But when that happens, I will be THRILLED that others will avoid having to go through the intense treatment that I had to. Begrudging you is a very strange response coming from those who are supposed to love & want the best for you. I don't get it at all.
My father in law had a heart bypass back when they were very new. He lived 3 awful months and then died. Nowadays, they have it down to a science and people go through them much more easily. His timing was just bad. I don't begrudge those who are having bypasses now and living a full healthy life afterwards.
PLUS bmx is nothing to sneeze at.
Please don't worry about the labels or the bizarre reax from your family. Just go forward, live every day to the fullest in honor of those who have gone before you. That is what I try to do.In support and SISTERHOOD -
Amy
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I know it's easier said than done, but you should just blow it off. You don't need the negative energy, it's only bothering you not them.
There was a time when my brother disowned the rest of the family & his kids when he married his next wife. I was angry with him for a long time until I realized he was hurting himself. It took me a few years but I did finally let it go.
He is back in the family now but still doesn't have anything to do with his kids. I have contact with them now throught facebook. It's sad, but it was his choice not mine.
You are doing your best to help others. That's kind of what I feel like I am doing here. I didn't have anyone to compare notes with while in treatment. So you just keep on surviving, previving or whatever you want to call it. Just keep trucking on!!!! NJ
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Hi. It isn't clear to me if your family is acting in a hostile mannner to you or if it's a matter of interpretation. This is a stressful time for all of you. It seems that most families have issues where they differ in opinion and if the issue is volatile or personal enough sometimes misunderstandings occur.
In a family where several people have experienced similar illnesses it could be easy for personal boundaries to get blurred. Maybe people forget that "the walk" is a highly personal one and that what applies for one person may not apply for another. Maybe in their desperation to help you they are being intrusive and offensive to you? I can't see from here.
At any rate I hope in time that your family is able to adjust to your decisions for how you view yourself and your walk to wellness. And let's hope also that hurt feelings and misunderstandings don't get in the way of being able to see the ways you each can support each other. That's my wish for you and them.
Perhaps that's your first decision to make - exactly where you do stand. I'm aware of the need to redefine myself in light of my experiences of the last year and I can see that it isn't an easy or necessarily rapid process.
The word survivor isn't quite right for me. I have two other potentially terminal illnesses and have worked through the healing process with them both. I don't think of myself as surviving anything. As amandabu said, we are all survivors of the perils of being alive in one way or another. And if not yet, certainly we will all face a crisis of existence at some point in our lives.
So survivor seems a bit dramatic for my taste. If it works for others I have no argument with that. Whatever works.
When I was in treatment I called myself a cancer patient. Now that I am hopefully in the healing phase I just consider myself to be a person living with cancer. Living being the operative word.
Whether I chose to share that with another person is highly situational and definitely my business. But I really don't care to ever define myself by my illness. There could come a day when my illness looms so large in my life that that decision will change but it isn't here at present.
I think you've hit upon an issue that seems primary for each of us. And each of us gets to figure it out for ourselves (with a little help from our friends.)
Good wishes sent your way.
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I definitely consider you a survivor and certainly think you have every right to participate in any breast cancer support groups/walks etc... What were you supposed to do? Wait until your hyperplasia turned into IDC or ILC???
I had cancer in my right breast so I knew that we were going to do a mastectomy on that side. Then I found out during the presurgery MRI that I had a suspicious area in my left breast. We did the biopsy and although it was not cancer, it was already hyperplasia (post surgical pathology found a few more other abnormalities and I had to look them all up). So I also had a prophylactic MX on the left side, so I guess that makes me a HALF-survivor, right? Ha Ha...
I think you're brave for doing what you did, because it would have been so much easier to just go into denial. You faced it and triumphed. Go Girl! BTW, I understand about family being weird. My Mom still hasn't contacted me since she found out about my cancer... When I previously told her about my hyperglycemia (I seem to be headed to diabetes) she sent me a weird letter about how I have bad genes and was doomed to die young.
So I completely get your puzzlement and hurt. But I am sure that everyone here considers you a survivor and I don't know how anyone could wish cancer on someone else.
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Anjanita,
It is hostility...my cousin wrote a mass email to rally support for a local walk. She mentioned the people lost to the disease...those whose lives have been touched by it...she included me with those words. No participation of mine, mind you...and my Dad called me to absolutely chew me out for representing myself as a survivor. Remember...my cousin wrote this email. Nothing to do with me. My dad angrily told me that I "don't get to wear that hat"...I didn't suffer...I'm not a survivor...I can't possibly understand and HOW DARE I represent myself as such! I was shocked and bewildered, especially because i had no idea what he was talking about...it was later that I learned of my cousin's well-intended email. My aunt...love her to pieces. She has really been amazing...but she jumped on the same bandwagon because of a shirt my boyfriend got me when I was dealing with the funny "bad boob job" looks at WORK of all places. It said "Yes these are fake...my real ones tried to kill me". She called me up to inform me that I was going to offend people with that shirt and that I don't get to wear that shirt...I'm not a survivor...I didn't have a positive diagnosis and can't say that I got it before me because I can't be certain that my pathology reflects a situation that would have turned cancerous. So...it was a huge diminishing fest and exclusion campaign...leaving me feeling as if I've done something completely wrong and offensive. She, as well as my dad both supported my prevention decision and then seemingly harbor some sort of resentment as a result. I think it is not a matter of bad translation at all...i think it is their pain from watching their mother fade away being somehow disgraced because I didn't suffer like that. I've offended them somehow. Who knows...
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I'm sorry for the hurtful situation you find yourself in, AJ. Hope you can find some comfort in the positive words you've received from posters here.
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Wow. I think your family's hostility is their misplaced grief over losing family members. It's so sad that they don't realize that they could have easily lost you if you had not been proactive with your monitoring and then BMX.
As for you not having the right to wear the hat, you can't tell someone that they didn't "suffer enough". That's just plain cruelty - this isn't a contest on who suffered the most, it's about offering support and love to others that have to deal with cancer and that certainly includes you.
All I can say is that you need to focus your attention on those around you that support you. So keep coming back here for support. I love this site, so many women/men, all with different stories, all with different attitudes and approaches to handling cancer. Don't let yourself get isolated at a time when you need support.
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AJ , sent you a private message...re: FORCE is based out of the Moffitt. Dr Rebecca Sutphen is on our advisory board!
Hugs,Marcia
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OMG I will add my voice to the many here: you are a survivor! Your family is just being horrible. You lost your breasts for goodness sake. You are lucky you caught it early ... before it became something even worse. I can't even imagine why anyone in your family would treat you badly over this. Sending you hugs and commiseration.
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Hi AJ, You are a survivor to me! Of course you can wear pink and walk the walk and run the races and participate in the events and feel like a legitimate suvivor.. because you are! This disease affects every woman and girl, whether we ever are the unfortunate one to get it or not -- the threat of getting it and the need of prevention is always always there. xxoo
ps. I have toxic family too. You wouldn't believe how they treat me even after all my cancer treatment! When I tell them they should get mamos (which they never have) they tell me I am wishing it on them and hoping they get it! Crazy!
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First of all, I say this with the utmost respect for what you have been through, but here's what I think as a lover of words:
If you survived cancer, you are a cancer survivor.
If you have not had cancer, you aren't a cancer survivor.
The word "survive" in this context means to live through cancer, and you didn't. You did preventative treatment to prevent cancer, and that is a very brave thing to do. You deserve a lot of respect for having the courage to do what you did - many women would not have.
I'm terribly sorry about your treatment and I know mastectomies are no fun, and I know the fear of getting cancer is no fun.
The truth is, you don't walk in my shoes. Fear and imagination and the potential for cancer is not the same as living it. I may never see my son graduate from high school, I may never see my first grandchild, I may not live to see my son's wedding. I am writing the story of my life for my young son, so he will get to know me.
I don't even call myself a survivor because I'm going to die of cancer, I call myself a cancer patient. I've certainly had plenty of treatment - I'm on my 5th type of chemo infusion.
That said, that's just my opinion as a person who loves words and wants to keep the integrity of a word's meaning. (Any word).
I think your family is awful and they have no business challenging you on this. If it makes you feel better to call yourself a survivor, than so what? It's not something I would ever quibble about and your family is being cruel to take away something that makes you feel better about what you felt you had to do.
I read an artticle about soembody who was BRCA positive and had an 80% chance of getting cancer - they called themselves a previvor. Kind of a funny word but the meaning is clear.
Anyway, I'm thinking the issue isn't the word but that your family is not acknowledging the pain and suffering you went througn, and I'm very sorry about that.
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We all have had our lives changed by this horrible disease...us,our husbands,our children,our parents,our siblings....we do not need titles or definitions...we need support, understanding, and peace in any way we can find that for ourselves. I hope my experiences help someone else hurt a little less or be just a little less scared. The wonderful ladies here have helped me just not feel so alone...even when I am surrounded by people trying to help me...it is here I am learning to help myself...and let others help me. it is sad your family has to be so petty...all that matters is how you feel and if there is anything we can do to support you just let us know...somedays this all scares me to the point I can't breathe, other days I am so mad I could scream, and others I thank God I went for that f&!?!ing mammogram that caught this early and I have a fighting chance...I can even start to joke now about how "fabulous" my new boobs are gonna be and planning a trip to New Orleans to
. I say call yourself whatever you want..don't waist your time on those who just don't get it ...and know how your story is going to help someone here who unfortunately will be starting on this life changing journey in the future... I have had several ladies who went thru this before me hold my hand in my early days and I fully intend on paying forward their kindness in anyway I can in the future. You are brave and wonderful...and our sister.
flash everyone..(so not something I would ever do...but now you never know:)) -
AJ I just have to offer my support for you. I am deeply saddened by how you are being treated by your own family. It does not matter whether you had cancer or not, or if it was caught early, or whatever. You did the right thing and you nipped this *bleep* in the bud. It is still quite devastating and such a hard thing to go through. You need love and support, not judgment. I'm so sad that your family is not able to offer that.
I hope you have other family and friends, who are able to give you that right now.
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Oh my goodness...you are all the most amazing women I've ever interacted with! Wow! I mean...just....wow. Thank you so much for all the words of support!
CoolBreeze...Thank you for sharing. I think you hit the issue on the spot...It is not so much the word, but the exclusion, isolation and diminishing of what I've been through. (which openly admittedly is absolutely nothing compared to others) And the weird thing is that THEY are the ones who started making lines in the sand and definitions. I just wanted a hug. lol. And after they started throwing stones and shut the door in my face, it then became "where do I fit". I'm processing through it and still consider myself extremely fortunate on all sides. I am sitting here in tears and so very sorry for all you are going through. I wish there was something I could do to help you.....all of you...all of us. I am so very sorry and wish I could hug you right now.
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