Lost my will to live
Comments
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I remember hearing "chesticle" many years (decades) ago as a euphemism for breasts - think it was an early feminist joking play on the word testicles.
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Jadedjo, I had been wondering how you have been doing, and am glad I found this thread.
I appreciate that you tell things as they are, and don't suger-coat things. It's honest. And that's a gift.
I relate to you a lot, because I too feel like I'm pretty well abjectly miserable most of the time. I am very much alone in this world. I just lost my best most treasured cat companion of 16 years and am devastated, as much as if a person had died.. I don't know how I can go on without my soul cat, she was my anchor. I think of just ending it all
You know one HUGE problem in Canada. The lack of mental health resources. I am crushed by severe depression, and I wonder just how long I can suffer like this before I give in and give up. I am on various wait lists of 6 to 8 months, and most of those are for ONE-TIME consult visits, after which my idiotic inexperienced family doctor is supposed to somehow take over my mental health care, all with her rushed 10-minute appointments. One wait list is two years long, I didn't even bother signing up. Even people in ONtario who have tried to committ suicide, have to wait 6 months to see a psychiatrist for follow-up. It's ridiculous. They would never treat cardiac patients this way; oh, you've had a heart attack, you can see the doctor in 6 months. But a mental health crisis is just shunted aside. It's a funding problem. There are so many affluent people in Ontario, I would much rather see a $10 co-pay for office visits, for those who can afford it, and improve the system here. And my shitty sad excuse for a Cancer Center offers no support groups, and a one-time visit with a nasty dismissive social worker.
Anyway, you are in my thoughts, and I am wishing you well.
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Hi JJo, wondering how you're doing and if you ended up having to go to the doctor's for the open wound??? ((((Hugs!!!)))
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Ceanna
Thank you. I am lucky if I can get 4-5 hours a night and then at some point in the week my body goes "I ain't got nothing left girl" and I sleep a full ten to twelve.hugs back.
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JJo, oh, I do know that same need to "catch up" on sleep. Back when I could sleep better, I would sometimes crash for 10-12 hours at a time also!!!! Now, I'm just usually chronically short on sleep and wake up even though I'm still tired. How you feeling girl? Did you get word from the doctor's office? Blessings and hugs.
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Alicebastible
Ya when I came back and reread it I'm going that sounds more like chest testicles which is so not what I was going for.
Amica
Man I thought my province had it bad but I think your area is worse. At least we got some support just not easily accessible. There are plenty of counseling places here ..if you have the money.which I don't so I go on super long waiting lists.
I'm so sorry about the loss of your beloved cat. You are already going through enough,you shouldn't have to deal with this too.
Ever since I first saw your post I've been hoping that you would be able to get the help you need, and it saddens me deeply that you aren't.
Ctmbsikia
Thee a reason you posts the link cause I'm very much aware I have the warning signs and have had them for awhile now. Still here.
Ceanna
Sorry I didn't see the new post til just now.
Whelp I didn't see anybody til late today, the surgeon himself actually. They say the open wound is a dissolvable stitch that didn't dissolve and decided to make the great escape out the scar line. I basically have to keep an eye on it. Sadly as I was getting dressed today I noticed the right side is seriously rippling. So I got one that's popping holes and another that's rippling like a underfilled baggie. In the grand scheme not that important but for someone who is already having issues accepting the new body parts it was a hell of a emotional blow and I had a crying breakdown in the clinic exam room when she said except for the hole everything looks great because to me nothing looks great. I got a boob with big crinkles, I got another one that is oversized and pushing out sutures that should have dissolved and it's happening 6 week good to go mark so it's not good to go and giant angry red scars. To me nothing looks ok.
So not released to wear daily regular sports bras ( but I'm doing it tonight anyways cause all my other ones are hang drying and not even close to dry)not released on the weight restriction, not released to workout. Which I have been looking forward to since end of week one as it helps with the anger. And they don't want to see me until next year.
I'm NOT waiting two more months to start workouts again. I'm going to start first week of December no matter what. Nothing intense and not with weights but I'm done with sacrificing and getting screwed over every time.i lost almost ten pounds but feel like I gained 20 because I'm losing muscle mass.
they told me I would be back to my usual physical activities in less two months and I'm holding them to it. 2 weeks should be enough time for the hole to heal.and it will be two months dec 2.
I'm just tired of all of it. Looking like Frankenstein, not being able to do my previous activities,the fact I now have no boobs but skin covered silicone baggies in my chest.
And that's also my new update,sorta hidden in my answer to you.
Hugs back and take care.
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Hope everyone is having a good week.
JJo, hope that errant stitch is healing. Sorry you are not happy with evolving results. Things will continue to change though. I know my doctor told me to give everything at least a year before the body adapts to a new normal.
((((HUGS))))
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Jadedjo
Well one of my long-awaited psych appointments is finally coming up. In early August my onc did make a referral to a psychiatrist. The PRE-assessment, not with the psychiatrist, is on Nov 30. Then I wait from 6 to 8 weeks to meet with the psychiatrist for the notorious ONE-TIME consult. It's pretty pathetic, but at least it is something. This evening I found out I have some kind of heart problem. I had an electrocardiogram and there is some of kind of blockage, so I am being referred to a cardiologist. I honestly feel like I have nothing but problems, that have all fallen on me like some kind of avalanche.
I hope you are doing better, it takes time for the body to adjust to all this abuse we heap on it in the attempt to heal it.
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JJo, hope your stitch is healing fast. Let us know how you're doing.
To everyone, ((Hugs)))!
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Sending you hugs my friend. Hope you are managing to stay warm and toasty in your new sparkly scarf and perhaps with the extra warmth of Le Frankenboob Scarfarama!
((((JJO))))
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Ceanna
It appears to be healing, there is not as much mess on the bandage as there used to be but I've been having a GERD flare up this past week and spend most of my time with nausea so mostly been watching DVDs and trying to read as much as I am able.thanks for thinking of me and the hugs, hugs back to you.
Amica
Thanks.
Man it never ends does it, seems like when it rains it pours. I'm so sorry you now have to deal with a heart issue as well as the recent diagnosis. Hopefully the heart stuff can be dealt with without major surgery, your body is dealing with enough right now. Take care of yourself and hopefully at some point they will pull their heads out of their butts and give you the mental/ emotional supports you need.
Spoonie77
Thank you.Finished the scarf last Tuesday and gave it a wash, now sitting on the hook waiting to be used. Haven't been feeling well recently I had to stop buying plain activia due to it not being on sale anymore and my gut took that as permission to act up big time.
I'm also dealing with the holiday despair that usually hits upon this time of year and it's been doubled because of the breast cancer, surgery and recovery. I've had so little to hold on to all these years and whatever small amount I had left was killed by those three words "it's breast cancer". I hope things have improved on your side, has the meds levelled out? Have you switched again? Hoping for the best.
Update:I see the oncologist this week and I don't want to because I already made my decision. I don't see tamoxifen as the Miracle drug they tout it to be I think it's just like cancer, a roll of the dice if it works or not and the price I would have to pay for that roll ,that may not even be a winning roll actually it's me it ain't gonna be a winner , is just not worth it in the end for me.i struggle to survive each day with the illnesses I got now. Adding on side effects and the aftermath of the estrogen suppression.? Screw that. Healing seems to be ok, I'm starting workouts first week of December healed or not because I'm just damned tired of my life being destroyed by my body betraying me all the time. Doctors (PS)can't even be bothered to do a check up for another two months ( I feel like they don't give a crap as long as I'm not in implant failure) and I'm not sitting on my butt those two months waiting for an ok. I'm starting light and very low impact but I'm starting. I will stay at that point until the appt when they better give me the full go ahead. I'm barely going to survive next month as it is I need the physical release and I need to build up muscle again because what I had built up turned to jelly. So this is where I stand right now. Barely surviving each day, quality of life even worse then ever thanks to a flare up and holidays and starting my own path cause the doctors can't be bothered with me. Or I can't be bothered with them. I think it goes both ways at this point.
Hope it's better for everybody else .
Blessed be.
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Hi JJo. Glad to hear from you and that healing is happening--albeit slow! I also chose not to take tamoxifen or an AI for a few reasons. I heard the oncologist out, got a second opinion, and then decided not to. It is a choice and the doctors are offering their best opinion.
Good for you about the exercising. You can always walk and climb stairs while you take it slow in picking up upper body exercising. Don't overdo!!!
Sorry about the GERD. I find I have a touch of it if I lay on my right side too soon after eating--our stomachs curve off to the left and if we lay on our right our stomach contents want to head back up the esophagus. Sounds like this is not the cause of yours, though.
The holidays are hard on many of us. Our tv shows, movies, social media, and advertising make it sound like it is glorious with ever pleasant family and friends. Not so. Try to establish your own traditions. I have over the years and it makes it easier!
Blessings and hugs!!
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Hi Jo! Just checking in. I totally know how you feel when you say the surgeon says everything looks good but it doesn't to you. I hate my new foobs. They just look wrong. But every time I see a doctor or nurse at my cancer center they tell me how great my reconstruction looks. I know what I hate about them now, specifically, but I'm worried I won't be able to get a satisfactory revision at this point and it's stressing me out. Stay warm and good luck at your meeting with the oncologist. Hopefully he/she puts your risk of recurrence very low, in which case you wouldn't get much benefit out of the tamoxifen anyway.
As for exercising, I feel like all the post-surgical advice I was given applied more to people with sub-pec implants. Pre-pec is completely different but I don't think most surgeons have enough experience with it to know what to tell us. I was told I'd be in terrible pain and too tired and feeling too crappy to do anything for two weeks, and then around weeks 3-4 I'd have enough energy to want to go out and do things but something like going out to dinner would wipe me out for the rest of the night. I took none of the serious pain meds, all I used was tylenol and advil, and even then only a few times. I went out to eat 2 days after my BMX/recon and wasn't wiped out. So my PS had no idea. They cleared me to work out after 5 weeks but I waited six because I still had undissolved sutures, though I was doing PT exercises from two weeks post sx. I don't know how your surgeon did your operation but mine sutured up the pocket around the implant and that was really the only thing that needed to dissolve before I could lift things again, because the pec muscles weren't cut or stretched to fit an implant. So maybe wait for your suture situation to resolve itself and then I think you'll probably be ok to start resistance training again. I think as long as nothing hurts you should be ok to do some light cardio.
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Ceanna
The holidays have already been hard for me for years but this year is a little worse because the little things carrying me through each year have pretty much been murdered by the cancer. I think the stress from holiday despair, stress from the implant issues etc is just feeding the gerd issues right now.
Saw oncologist, total waste of time. Apparantly here once you are done treatment or choose no more treatment like I do they wipe their hands of you and put everything on your family doctor. The same family doctor who didn't have the balls to tell me I had cancer let's just say his actions since diagnosis have left a lot to be desired but it's so damned hard finding a new one I'm not even going to bother.
She didn't give me any numbers in my survival other then to say tamoxifen would help 30% more on reducing reoccurrence. I wasn't gonna do it when it was 40-50% so to hear it's even less just cemented my decision. I would lose too much for so little. She says if I change my mind contact them but otherwise don't bother coming back ( not in those words much more politely and medical but the gist is the same). She did say it was very early breast cancer stage 1. And no eveidence of any in the node or lymph vascular.
She supports the diet and exercise lifestyle change. Says supplements don't work also says since I got the double mastectomy I am essentially "cured" of the cancer because by all evidence it completely removed what I had I replied with no not cured. As of right now I see myself as NED until shown otherwise.i also hold the knowledge that the otherwise could happen at any point.
Blessing and hugs to you also
Hapa
I trust me I know the hate. Right now the right side of you feel the bottom feels like a half filled baggie under the skin,like I can feel the implant crinkling and everything i will probably contact the nurse next week to ask if that's normal or if something is wrong with the implant. Honestly it feels and looks like two different sizes where the right only got a half filled implant and the left got over filled. The other side feels like an actual boob when you feel around it. The right you can actually feel the plastic of the implant crinkle in and out(it's also the rippler). I'm seriously wondering if the right side sprung a leak. I feel like the right side is collapsing.
I also hate them they don't look right in any way shape or form like the doctor said but every time I go there they say everything is ok nothing to worry about. Sometimes I wonder if I should have just gone flat but I think my reactions would be even worse.
I don't have much faith in doctors before and my whole experience with cancercare and my own family doc since diagnosis have killed what little I have left.
I know what you mean too because I was pretty much recovered by 3 weeks all I had was twinges I wasn't taking painkillers anymore and almost had full movement. Now I do have full movement and It hasn't been two months yet. I stopped wearing the surgical bras they weren't doing anything not even support but still wear bras 24/7 because it feels awful without them especially with mr. crinkly.
I talked about the oncologist in my response to ceanna but I can say I'm as even more confused now then I was before.i was given no survival numbers nothing was calculated and the number I was given for the tamoxifen was 30% which was even worse then I thought. I just straight out said nope not doing it, price is too high for so little. I'm not a 100% sure but I think she was saying since I got the bmx I pretty much took care of it because it was so early and hadn't knowingly spread.
I will be starting December 2 I should be fully healed (escaping stitch) by then. Hopefully I don't make mr. Crinkly worse.
No weights until after my jan appt just to be safe.
Really hoping things get better for you and you are able to get what you need in regards to the look of your foobs.
Best of luck and health.
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Jadedjo - where do you live? Canada or US or ? It sometimes seems like 'too little, too late' but where's there is life, there is hope - no??!! My Cancer Center offers many forms of support both pre and post diagnosis, which has been greatly used by me...Is there anything we can do to help (apart from virtual, healing hugs)? Those hugs go to all of us in need on our very twisted, unwanted journey
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JJo. sorry you got such little information from your doctor's visit. I remember trying a couple of online risk calculators and just looked them up for you. Remember they aren't a certainty or guaranteed, but might help you figure out your risks. You can enter your specifics and then ask it to calculate with or without tamoxifen, or other treatments.
https://www.predict.nhs.uk/tool
http://www.lifemath.net/cancer/breastcancer/therapy/
https://reference.medscape.com/calculator/breast-cancer-recurrence-mastectomy
One thing about percentages--you have to know what numbers they are using for their base. For example, if you say 30% of all people who get BC, versus 30% of all people who have a mastectomy, versus 30% of all people who don't use tamoxifen, you will come up with very different answers. Perhaps playing around with the variables in the calculators will give you a better idea of what that 30% number really is. Sorry she was not clear. It sounds like you have low risk factors however--no lymph nodes, mastectomy, early stage.
Sorry, too, she was so negative about supplements. Old time doctor!!! The only way to raise Vit. D3 levels is either sunshine or vitamin supplement. Remember, most doctors have zero hours of training in nutrition and vitamins!!!
Sorry about the crinkles!! But glad you can exercise some.
All the best and extra hugs for enduring a less than valuable doctor's visit!!
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Janky
Thanks I live in Canada in a place that is a cancercare hub for most of the province so it's pretty much get better so we can close your file and get rid of you. Not a lot available even less after cutbacks.
Ceanna
Thank you deeply for the calculators. It pretty much said that using tamoxifen would just add 1.4 years to life expectancy then without treatment not worth the Hell I would be going through those years.basically what I seem to be getting is my risk is low but there is a slightly bigger (like an added 5% then if I take tamoxifen )risk because I'm not doing conventional treatments after surgery. Maybe if I had a child or a signifigant other that I would want to be as low risk as possible but I got nothing worth living for and cancer took away what little hope I had so I will just take what I got left and deal with my usual life ruining health issues instead of adding to them with medications. Could it mean I won't live to senior citizen age.Yep and I'm totally ok with that.What irks me is that the people around me said the oncologist will clear things up and I'm actually more confused then when I started. Sadly it's going to be awhile before I can afford extras like cut D and turmeric supplements because the small amount money I had put aside for it to start in Jan had to be used for new winter boots because somehow while sitting in a closet after I checked them in the spring and they were totally fine my old winter boots developed a tear the size of my pinky along the part the sole connects to the boot and eveytime I went out in the wet snow I ended up with wet soaking feet.
I literally cried because it took so long even to build up that small amount for the medical fund and it had to be used for boots instead because wet cold feet = getting sick on the regular for me. Also it leaves me shivering non stop until I got them wrapped up in fuzzy socks and warmed up. Just when I think I might get ahead I get slammed back down.
Such is my life.
Thanks
Best of health and life to all.
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I found this thread. I want to add something my friend told me years ago. She watched as my abusive marriage ended. She has never married and never had kids. Her quote was, "I will never complain about not having married. Being single is so much easier than being in the kind of relationship you had". That was a sad comment on my life at the time.
I hear your pain and wish I could reach out and tell you "this to shall pass" but I have not slept well since I had my first surgery in May 2018. My non Boobs look like a painting done by Picasso. And to top it off I have lymphedema in my left arm and trunk. I had a lymphedema person tell me that I really didn't have lymphedema as it was all in my head and gave me two numbers to quack type people that will use voodoo type stuff not covered by insurance. I might be crazy but I do have lymphedema.
I cry and feel like this can not get any worse and wait for the other shoe to drop.
I have no real words of wisdom other than as sisters in this mess called BC it truly is BS. To be honest I have nothing to add and don't know why I felt impressed to even type this much.
{{{hugs}}}
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JJO -- Uggh what an awful, depressing setback to have about your boots!
I'm so sorry that that happened and sucked up your reserves you worked so hard to squirrel away for your supplements. It's devastating to have it taken away like that by unforeseen expenditures. While I don't know how you're feeling exactly, I can guesstimate. I've lived month to month for years and years, with little more than $10-20 to spare each month as living on SS Disability is a tight fit indeed. Ha ha ha, all those people that say I'm out buying lobster and Versace' on government aid....ya right. Anyway, I squirrel it away too and hope that nothing happens, just like you. It takes months and months to recover. So I know what I slap in a face it feels like, to not even have the safety of a "safety net" financially, or to even splurge for the little things every once in awhile. I hope you found some warm boots and are staying dry and toasty again when you have to venture out in the wintery weather.
Thanks for asking how I've been doing. I wish I could say better. SAdly, not so much. Still feeling "alien" and "not myself" and angry/aggressive on this new anti-depressant (Pristiq) they switched me to so I could take Tamoxifen eventually. I hate it. And am also not having lots of additional issues after finishing my RADs. Diagnosed with Radiation Fibrosis, Breast Lymphedema for which I'm seeing cancer PT 2x week for. And just for kicks, now have some sort of "rash/not rash" spreading in a linear fashion around the borders of the radiation field. Have to see my RO tomorrow for an impromptu appt to see what's going on. Fingers crossed it's not an infection or something worse going on....ugggh.
Anyway, enough of that complaining of mine, thinking of you and sending you warm hugs. I wish I lived nearby, I'd come visit with my pup so she could give you a kiss or two and persuade you into throwing her ball endlessly for her. I'd bring some nice warm coffee or tea and we could just enjoy the silence together and know someone in the world understands and cares. Lots of love my friend.
((((((JJO)))))
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for people who are struggling w depression -- please take a look at Neurofeedback.
"Neuroptimal" is the kind I know about-- very easy, you listen to music while hooked up to sensors and the "feedback" coes through small clicks in your music. Developed by a Canadian. Its very effective and quick. in about 10-12 sessions you will feel distinct changes and in about 20-30 you will be done. GREAT for insomnia. I know about it because I am a court appointed special advocate for a youth in foster care who it really helped. It works with the right brain which talk therapies do not. My youth had had years of CBT to little effect, and then NF worked incredibly rapidly and well. Because her results were so good, I tried it too-- though I was not depressed, it definitely improved my sleep, and increased my patience.
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JJo, glad you found the calculators useful. I think they showed it added about a 1/2 year for me but other medical reasons also kept me off tamoxifen. Not worth it for me. So sorry about your boots. I wish you were closer so I could help you out. I don't have much but would love to get you some new boots! Hugs, Ceanna
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ceanna what age do you put in the calculators? Dx or current? Tia
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Rosabella, I'm not sure, but I would guess that using the age at diagnosis would be more predictive, especially if a number of years has passed since diagnosis and treatment. Try it both ways and see if the numbers change much! I know I tried it with many different combinations and treatment options. Interesting, but no guarantees!!!
Hugs to everyone here!
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How's everyone doing? Extra ((((((hugs)))))) for the day!!!
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Kandy hunt
Sorry to hear what your going through sadly I know through experience it CAN get worse,these days I just expect it. Hopefully things are looking up for you if not now very soon.hugs to you.
Spoonie77
Thank you, i knwonthe month to month struggle to be able to cover not only things I need but food to feed me through the month is a huge struggle. I'm going to be scraping by this month big time. Another reason I hate the holidays. Turns out I bought the boots just in time we had a two day snow storm and at points walking outside I feel I need snowshoes more then boots.
Best of hopes and caring to you that things right themselves so things aren't such a struggle. Hugs back.
Santabarbarian
Never even heard of it, not sure it's an option here. I can't even get in to talk to shrink so getting alternative treatment from one is pretty much impossible. I would try it just for my sleep issues alone. Thanks.
Ceanna
Thank you. I know the difference between taking tamoxifen and not taking it wasn't a huge one at least for me. The risks of side effects that I was likely get due to my sensitive system just wasn't worth any of it. I might have risked it if I had something worth dealing with the possible risks and side effects but I don't so to me not worth it. Between that and the doctor saying tamoxifen would only be 30% effective I wa pretty much NOPE!
Small update:Physically healing ok but my right frankenboob has crinkled like nobody's business and my chest now looks like a total freak show. I noticed lefty is starting to do the same too.so it looks like surgical revisions in my future.
Mentally I've fallen into deep holiday despair and am keeping myself away from people (just don't want to deal with them and am sure they don't want to deal with my grumpy cat resting face either)I spend my time right now watching mystery science theatre 3000 (on the return now) and playing multiple free word game apps mainly word Crossy by mind drift. It's keeping my mind off the fact I won't be celebrating the holidays and will be sharing it with something new this year a cancer diagnosis and the threat of a cancer reoccurrence. Not anything I want to share the holidays with,really.
Thanks to all for the hugs and caring, sending back to all who need it.
Blessed be.
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JJo, glad you made it through the big snow with your new boots! I joked with someone today that spring is only 4 months away!! Not funny, I know!!! Sorry!!! Extra hugs for the weekend!
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Crinkled? You mean rippling, or the implant is too small for the pocket?
I got a consult on a revision a few days ago. The PS here said she thought she could put in flatter, wider implants no problem. I will have to wait six months after radiation is finished (it finishes on Wednesday).
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Ceanna
Thanks.Actually by the time the snow melts around here it will prob be 5 months. We are having a weird winter this year, really freezing one day, surprisingly nice the next. So I have no clue what spring is gonna bring us.hugs back to you also.
Hapa
Yes it's rippling big time. It looks like waves. My doctor never said anything about revision but I'm seriously going to say my chest is a freak show, you put the worst kind of implants in and I look like fat ugly Barbie. Did you miss when I said I wore sports bras because I hate the way my real breast protruded?!? Oh and I sacrificed my nipples for nothing because I'm still huge I never went any smaller. At two months I should be seeing signs of swelling going down and instead it's basically horrific Barbie tits that are indenting all over thw place.
I am not okay with this. It's bad enough I had to amputate my boobs to give myself a chance of living but now I'm a freak show ogre on top of it. I hated my body before,didn't think it was boossible to hate it more but it is because I totally do. The only thing that goes through my mind is after two spots instead of taking what I WANTED into consideration the doctor did whatever the hell he wanted and gave me what I said I wanted the least when we talked BOTH times.he used the implant I didn't want because of how far they protruded out.
I'm giving it until feb just to see if it's going to go down or right itself (but doubt it will) and if he doesn't fix it I'm filing an actual complaint with cancercare and whoever else will listen. My life sucks enough I'm not going through what little is left (whether it be a few years or a couple decades)with this freak show on my chest. It's not like anybody but me is going to see it, I've given up on being in a relationship or meeting someone really, but as someone who's hated their body even before having to amputate their boobs this freak show is a bigger nightmare then I expected it was going to be.
Unfortunately we don't get to choose our surgeons around here so I'm stuck with him.
Congrats on being able to do revisions that you want. Hopefully the six months go by fast and the revisions go very well.
Blessed be.
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Hey JJO - Just sending hugs. Having a really rough go here and am in the pit of despair basically, so thought I'd take a field trip and join you in yours if there's room? LOL. So move over, I brought coffee, tea, chocolate, warm fuzzy socks, and my Hulu password.
At least if we can't make our lives better, we can spend it in good company, am I right?
Hugs my friend.
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