Chemo June 2010
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Hello ladies, im so very upset, i was to start chemo on Thursday the 17 of June, AC x 4 T x 12 i just had my port put in today, the 15.. its been 5 in a half weeks out from surgery, The DR calls me today and tells me the drugs are not in and i cant start chemo Thursday, says it has something to do with my INS, they approved the A but not the C, makes no sense to me... i know my ins will cover everything... MY ONC said they are probably out of the other drug??? i was so upset and in tears cause i was ready to do this but the scary thing is if i have to wait! The ONC said i need to start chemo within 4 to 6 weeks after surgery? she said if there is a cell floating around in there we need to kill it!! I could tell she was irritated with me cause i was in tears when she called to tell me i couldnt start yet.. but she is the one who scared me?? do u think it will make a difference??? i feel like i cant take anymore..
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Hi everyone:
Kittycat: Wahoo for you baby! I read your post a little earlier about having to wait a few days for the MUGA results and was going to post a suggestion to you, but you got ‘er done girl. Good luck tomorrow. I had my first AC last Wednesday, and it went well. The steroid pre-treatment made me kind of hyper the first night though-FYI
A few things ladies: I would like to share what my experience has been regarding pre-meds, etc. Since I do not know the details regarding where everyone is going for their chemo, I can tell you that I am one lucky girl who goes to a top notch facility in Grand Rapids Michigan, which is associated and right across the street from where I work (I'm currently on STD though). Please don't think I'm trying to be a "know it all" nurse-I didn't know squat about cancer, until I got it. Rather, since I'm lucky enough to have some major competent people working with me, I just thought I'd share. My pre-meds before the chemo included 1) Decadron (steroid), 2) Amoxi (for nausea), these were both IV-I was also given a Rx for Emend (which I filled prior to going). This is a pill that I took when I got there, and was instructed to take 2 more doses on the 2 subsequent days. I was also given a Rx for compazine. I did not have any nausea until about day 4, and that was very minor. Day 5 was probably my worst day (yesterday). Just fatiqued, a little nauseated. I did what I could, and layed down in between. My kids are old enough now that I can do that, thank goodness! I know that the above mentioned meds probably aren't an answer for everyone, but at least you can ask about it if what they're giving you isn't working.
Mimi9186: I'm talkin' to you girl, with that last line. You are doing everything you are being told to do-drinking lots, exercising, and yet you are still feeling like crap. Call whoever it is you need to call in the morning and let them know! You may be suffering needlessly. You sound down-I'm so sorry you feel so bad. I'll be thinking about you.
Twinmomjackie: OMG-the breath cancer is a gem! I cracked up out loud when I read it. I love it that you are messing around with your twins on funky hair cuts. I told my girls that we'll have a shaving party when mine starts to fall out. They are all over any kind of "party"!
Designermom: Love you humor missy! When I can, I try to laugh at it all- because.....I just plain love to laugh.
Few more things: Bowels....Even before I had my mastectomy, I started to take Miralax daily, in addition to my regular fiber. Knowing I would be on pain meds, I wanted to prevent what happened with child #4 after a C-section. (thought I was going to have to go to the ER, seriously, after not pooping for days). Even doing that, I struggled a little bit post op. I haven't had any problems so far, but I do take a dulcolax pill almost everyday because of my shingles pain, TE pain, and occasional pain meds. My nurse also suggested Senekot D which is not only a softner, but has a little laxative in it as well. OK-enough about poop.
I have a question: How many of you have a port? If you don't, why not? It was not a given with my Onc., he really didn't even talk about it much but I figured with only one arm to draw from and poke for an IV, even though I have good veins, they wouldn't be good for long. Just wondering.....I even have a Rx foremla cream, that I will place over my port 45 minutes prior to numb it, before blood draws and chemo. Every little bit of pain avoidance, or comfort is worth it, I say.
Okay: one more thing for the night-just really looking forward to losing the nose hairs like everyone is describing-I love a good drippy nose
I better lose these annoying chin hairs as well, or I'm going to be ticked. Someone mentioned something for mouth sores in an earlier post and now I can't find it. Can you repeat it?-I think it was directed at me. I got my stitches out of my mouth today (the girls in the office were nice as pie this time
), and that area is raw. I just rinsed with baking soda, salt, and water which was recommended on a google search for chemo related mouth sores. Good night everyone. Laurie
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joanngil ~ I had my surgery April 27th, and planned to go back to work within a few weeks...HA!!! That was a laugh as my body was not ready to go back that quickly!!! I tried to work after 1 month, but ended up with a complication with my port (blood clot) and had to take another couple of weeks. I finally went back to work for two long shifts (12 hour shifts) this past weekend, and I did 'okay'...I was tired and it wasn't easy, but I was glad to be back doing something more normal again. I think everyone is different. I am working a little less than my usual schedule while I go through the chemo, but for me it was important to try to have as normal a routine as possible. Everyone is sooo different, and it's very personal when it comes to working or not working. My SE's have been tolerable, and so I would rather be working rather than waiting for my next wave of nausea and thinking about my cancer. I am on intermittent FMLA, so that I can take days off if I need to because of the chemo. My first 9 weeks will be 'okay' I think, but the last 9 weeks I will be receiving FAC, and I may need to take more time off for that.
Sorry, I'm rambling.....I did really good with my chemo yesterday, then WHAMMY the nausea hit, and I got sick late this afternoon & couldn't keep my supper down. I think it must be when the dexamethazone wears off, because that is exactly when I got sick last week. I took some Phenergan, now I'm getting sleepy. Guess I better head to bed.
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June 17 AC x 4 three week cycle T x 4 three week cycle + radiation
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Chey-I'm so sorry you are so upset. I would be too. It's horrible to have your head set on something and then have it delayed. Try not to be too upset about the 4-6 week thing-the chemo is going to nail it once you start. I'm sorry your Onc. seemed irritated with you too-that's not fair since like you said, she's the one that told you that info in the first place. Try calling the office in the morning and talking to a nurse. Some Dr.'s, although totally competent, don't have the best bedside manner and you may get some reassuring answers from someone at the office. I hope you feel better soon. Laurie
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Janny99,
I really liked doing the 'Look Good, Feel Better' seminar b4 starting my chemo as I was totally impressed with how great all the other ladies looked, it made me really hopeful. Some there had been battling for a long time. It made me feel better prepared for what's to come. Where is Florence? I'm sure i should know but I can't place it. I'm just outside Denver.
Cheyanna, I'm sorry you're going through all this stress, but I don't think starting chemo a couple days later will make any difference. I'm not starting until almost 8 weeks post surgery, didn't think I was going to be having chemo at all. My onc. and surgeon both said it probably took years for my tumor to get big enough to see on a mammogram, so i think if there's any little cancer cells floating around I have a little time to zap them!
Julia
Julia
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I am working through chemo. I just stay home on the bad days and go in on the good days. That is about all we can do. I am hoping to get more good days as I go along! Number two treatment today. So not looking forward to the nauseau that will hit me on Friday and last for a few days. However at least I know there is an end. Good luck today kittycat. Glad you are finally getting the show on the road.
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Ladies, I can not describe how much you brighten my day. I am feeling better this morning and no longer think I might die at any moment. I will always think of my breath cancer and those darn nymph lodes forever more. I finally got off my "stubborn" seat and made an appt. to look at wigs next week. I choose not to work thru chemo. I am a retired nurse who now teaches nursing at university full time. the students are out for the summer and I will still be doing chemo/radiation when fall term starts. I have a five hour drive each day for radiation trmts. so teaching is out. I appreciate those that continue to work and make their life normal. I have even more appreciation for those with younger children at home. You are amazing.
Hugs and blessings, Mimi
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Beanius- Are you okay?? I'm hoping the "Aaaarghhhhh" is just a respons to the dog tale from Akita.
Akita-Amazing story. I remember when my dad was sick with a brain tumor. His dog became a downright pest. She would NOT leave his side. We would kick her out the front door. She would go around back and scratch hrough the screen door. We would find her at his bedside "guarding" him.
About those prunes. Mandy gave me the prune tip. I can tell you after my ordeal with constipation during my first treatment, this girl is going to go for her second treatment FULL of prunes! I stewed them to get moisture back in them and then served them over plain yogurt with Grape Nuts and honey. Yumm!
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lauriez- I also only have one available arm become of my "nymph Lodes" being removed. I asked if I needed a port. As I am getting CMF, my Onc said perhaps not. I think it is not as hard on the veins as some regimens. She said I could always have one placed down the road if needed. I chose to try with my veins as I wanted to avoid another surgery and anesthesia. I might ask your chemo nurses what their opinion is. These are the hands-on, pros. My Onc actually called one of the Onc nurses in to look at my veins and give her opinion. These nurses start IVs all day long. In this area, they know more than the doctors. The mouthwash that was recommended to me is over the counter Biothene. You want to avoid anything with alcohol as you are at risk for mouth sores. My Onc nurse said swishing with salt water was great. Heal well!
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designermom: thanks for the info on the mouthwash! I had my port placed under "conscious sedation" Versed and fentynal. Outpatient procedure just so you know for the future. I will ask my onc nurse about CMF. I start IV's all day long in my job-but at some point you may have some difficulty and then wished you had the port placed in the first place. Trust me, I'm not being paid by the "port vendors" to advocate for them, just giving my opinion. They can do blood draws from it also. I see that you have the CMF x 6. How many down for you? take care! Laurie
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Cheyenna - I'm sorry to hear of your delay and I totally understand as I was supposed to start June 6, then June 8, now maybe June 22 or June 29. My delays are for different reasons, but it's hard to be all psyched up and then no go. I had a big melt down yesterday. I'm no expert, but I've been told by several oncs that the window is 4 to 8 weeks after surgery.
Lauriez - thanks for sharing about your meds, very helpful. My onc didn't recommend a port for me due to that it involves a surgery in and a surgery out versus only 4 to 6 treatments every 3 weeks, I guess the tradeoff wasn't there to warrant it.
Janny99 - I agree to try to keep everything as normal as possible is a good thing. Glad to hear you SE's are tolerable. Take care and let us know how you are doing.
Julia2 - Glad the Look Good Feel Better seminar went well. I'm going to one of those early July.
Jenweg - Congratulations for getting to #2!! Hurray! Hope you continue to get to work and don't get nausea.
Mimi9186 - So glad to hear you are feeling better. Hope you find a gorgeous wig next week. Wow a 5 hour drive each day for rads will be a challenge. I'm thinking of going 3 hrs each way for chemo to a better facility than there is locally.
DesignerMom - thanks for asking, I had a meltdown yesterday and that's all I could get out. This is a recap of what happened. I went to chemo class on Monday and it set me off. The "class" was just me and a nurse. The nurse was very kind, organized, knowledgeable and competent...and she seemed like one of the most depressed people I've ever met. To go through all this stuff about SE's with the grim reaper was a major downer. Then she took me to the infusion room which is extraordinarily drab and has no windows. It just hit home how awful it would be to have treatments there. Then yesterday, the onc in charge of infusions called and seemed annoyed that my surgeon didn't take the drain out last week and she started telling me there's no point in getting the oncotype test and that I have to start next week even if I don't have the results. I have more confidence in my other onc from the cancer center (3 hours away) who ordered the oncotype test. I was weepy in the morning, but by afternoon yesterday, I took myself for a walk and got a cell call from my DH while walking and when I heard his sweet voice I just broke down like a baby and was balling my head off all the way home. He was really nice and came home right after and opened a bottle of wine for us to relax. Quite honestly I have NEVER openly cried in public before. I can only wonder what any neighbors who saw me must have thought. I think I was a good 20 minutes from home when I melted down. I'm seriously thinking of driving 3 hours each way for chemo to the nicer place. The depressing place, all these delays, doctors not saying the same things, all this confusion just caught up with me. I also can't stand when the doctors sound annoyed with me when I am really following all the instructions. So for now, I'm just waiting till I see my surgeon and onc on Monday to see what they say. BTW I was so glad to hear you got past the constipation. I'll take the "full of prunes" tip when I get there - thanks for that!
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I started chemo yesterday 6/15. I am taking Cytoxan and Taxotere. 4 treatments. One week on and one week off.
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Ok 1st day after treatment i am still doing ok. Went for my Neulesta shot. It burned a bit but otherwise ok. I am really not having SE's yet. Tired but was up to my morning walk. I only went half the distance I usually do but at least it was a walk. I am not looking a gift horse in the mouth so I am just thankful I am holding my own so far. For all you ladies with the SE's - I hope you get back to feeling better soon. I know a day is coming that I am going to be right there with you. Althought, I am "pruning" up cuz that is one I can definitely do without!
Cheyenne, I am so sorry you are having the rough time. I had my bi-lateral mastecomy on 4/19. I didn't get the last two drains out until week 4 1/2. I actually saw the BS that week before the drains came out and asked him when the chemo should start - he said 'with your cancer we should get you started at 4 weeks." I looked up at him sweetly and said "well, we have a little trouble with that time line since 4 weeks is today". He then backed up a bit and said well, we need to get you healed first so don't panic. The chemo will work even if it is 8 weeks. Good thing because it was! I didn't start until 6/15. So, not that I am minimizing your anxiety or frustration but I can assure you that the delay won't change the effectiveness of the chemo. I am sorry the Onc took frustration out on you. Hang in there and keep us posted - we will offer whatever support we can. Hugs!!
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Hi Ladies,
I just found out I will be joining you. I start treatment on June 23rd. Taxotere/Carboplatin/Herceptin X6 with Herceptin continuing on for a full year.
I had a BMX on May 26th and my pathology showed me to be cancer free. All nodes clear. Whew! Now on to make sure no pesky rogue cells snuck out anywhere.
Looking forward to getting to know you all. There seems like so many of us.
Jen
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Hi everyone, question: I know that with ER+, they tell you to avoid eating soy... does that also mean to avoid products like lotions that contain soy/soybean oil? Or is that totally different...?
PS designermom- great idea about stewing the prunes with the yogurt, sounds great, I tried eating them dried and... gross.
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Hello my fellow June Chemo ladies!
Well, it's been one week exactly since my first treatment and I have to say, I must be the weirdo. I have had diarrhea every single day since treatment! Also developed "thrush" (which may be why I have the diarrhea - all things are connected, aren't they?). MD gave me Lomotil and Diflucan and they have helped. My tongue is at least getting back to a normal color!
Now if my bowels would just cooperate!
And like so many of you - I'm breaking out! 58 years old and I have pimples! Not too bad, but still, how embarrassing! I even have a pimple on my eyelid! Ouch! And as I've had very oily skin/hair all my life, I'm actually looking forward to drying out from the treatment. I feel like an oil slick. I did buy some witch hazel and Seabreeze to help keep my skin clean and prevent pore blockage though.
Last Monday went for the Look Good, Feel Great makeup seminar. As I am not a "girly" girl, having all this make up around is kind of overwhelming. I'm just a blush and mascara kind of girl. But I guess eventually I will need to use this stuff. Some of the cosmetics are very nice and feel very luxurious on my skin, but I'm sure I won't use 3/4 of them. Can't make a silk purse out of a sow's ear right?
Saturday I go for my wig fitting and every day I look at my hair brush to see if it's starting to fall out. Not yet! Then I have to wonder if I'm having SE so different from everyone else, if my hair WILL fall out? I sure would hate to invest in a wig and shave my head to find out IT DIDN'T fall out! That would be horrible!
Keep your chins up. We'll get through this together!
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RS711, in regards to soy products and ER+ tumors. There are different opinions out there. Dr. David Servan-Schreiber, M.D. (and cancer survivor) states that women who have had breast cancer restrict their consumption of soy to moderate amounts (no more that one soy yogurt or one glass of soy milk a day).On the other hand, concentrated extracts of isoflavones sold as dietary supplements for use during menopause have been suspected of promoting tumor growth and should be avoided. I figure, as in all things, MODERATION is best.
Mimi
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Beanius! I am SO sorry for your experience. It's hard enough having to do chemo. To have to do it in "Stalag Chemo" with a miserable nurse would be torture. My first experience was SO doable because of my kind, funny, experienced nurse. Also there was a fresh-faced art therapist with lots of craft project diversions. There were lots of windows (10 floors up, no view, but light). I can't imagine doing this for months and dreading the facility too! Do not question your intuition. Your gut is your protection and speaks to you. If this does not feel right, you WILL find a better alternative. I don't know where you live, but there MUST be other facilities. Are there any of those Cancer Treatment Centers? I will keep you in my prayers...and now I am going to google where Grays County Harbor is!
All you newcomers. Welcome! These girls are the best, best, best!
All you ladies with skin breakouts. I don't know if it would be of any use, but I dabbled with aromatherapy and essential oils for years. At one point I had mean breakouts from rosceascea. NOTHING worked. Then I experimented with pure essential oil of lavender. It cleared it up overnight. DO NOT put lavender oil on the skin undiluted . I would clean my skin as usual. Then I would wet my palms with water, drop 1-2 drops of lavender oil in my palm and spread it on my face. Don't get it in your eyes. Perhaps try it on a small area to make sure you don't react. Chemo changes everything.
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Thank you girls, we have been dealing with this all day today and still have no answers, im sorry im complaining but i dont think my sister and husband can take any more of me im so afraid!!..lol my sis drove 3 hours last night to get here by midnight cause i was a wreck..God love her.. ive been working in the yard all day with her to keep busy. Im not thrilled with my ONC or the office anymore, im so trying to stay positive so i can get right through all this... thanks for listening, or shall i say reading?
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Lauriez - good info on the meds. When did you start taking the Compazine? They told me to take it when needed. I tood Emend and Protonix (for acid reflux). Just wondering if I should start taking the Compazine right away or if the Emend is enough. I really don't want to get sick.
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By the way, the chemo went well today. It didn't take a long time. We were there for a couple hours. I sucked on ice chips and ate red hots, when they gave me Adriamycin. I got a little sinus pressure after the Cytoxan. Other than that, it was pretty uneventful - thank goodness! Now let the fun begin!
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Hello ladies
I am not going to attempt to 'backtrack' and itemise wishes for everyone so please forgive me and accept a huge, generalised 'all the best, hugs and love ' for everyone from me, here in New Zealand!
Cheyenna, I hope I can put your mind at rest a little about the delay in your chemo. I know that different countries have different regimes but like you I am on AC chemo (first cycle was 10th June, having 4 cycles one every 3 weeks) and my oncologist said that the ideal starting time was 5 to 6 weeks after surgery and not later than 8 weeks. Mine started 6 weeks to the day post total mastectomy with immediate TRAM recon. So while I realise the delay (especially if it is due to having not got the drug) must be awful I do not think your treatment will be being compromised at all.
I read lots of the posts with interest, puzzle over some, especially the ones that discuss your US funding, research, insurance etc - we are fortunate here in NZ that our BC treatment is top notch and state funded so are free of one major worry that it seems many of you have.
My first treatment went well. For me the main side effect has been fatigue - the first 4 days after the chemo I could barely wake up for more than a couple of hours before needing another nap. Bit of low grade nausea (the anti nausea drugs seemed pretty effective), slightly sore throat and just today a tingling scalp (goodbye hair??) and a few big adolescent pimples on my chin brewing up! I waged a full on battle against constipation as I'm prone to it anyway with fruit, fibre etc and managed to keep that at bay!
As so many of you say, not a walk in the park but not as bad as I'd been expecting either.
Very best wishes to all of you lovely June 2010 ladies xxx
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Am awake for a few minutes after having my first treatment today (A/C). Nurses were super! Did not really experience any bad effects except I got the sinus headache with the Cytoxin. My head also felt "funny" and I had a hard time describing it except that I felt like I might pass out. They slowed down the drip and reclined my chair some more. My port was great. I was given a shot of lidocaine with a tiny needle first, and that made things much better. It took about 4 1/2 hours total. I ate lunch when I got home and was feeling tired, so I went back to my room and laid down in my recliner. At some point I went into a deep sleep. I woke up just a few minutes ago and used the bathroom but I feel like I've been run over by a Mac Truck. So after this post, I guess I'll take another nap. But - I DID IT! One down - seven more to go.
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Hi all
I am a newbie at this. I had my first chemo recently, and things have been going well. I am on FEC100. Side effects are really minimal: fatigue, heartburn and weakness. The only unexpected thing was chest pain and shortness of breath. I was checked out at the hospital, there's no bloodclot, and apparently no explanation. I wonder if others are having similar reaction?
Also, I was reading other posters about the delay in starting chemo. My onc did not seem to think it was a problem... I had a lumpectomy and sentinel node biopsy on Feb 5/2010, followed by more tests, another excision on Apr 30. Margins still aren't clear so more surgery is needed, but the doc said I should start chemo rather than delay and have more surgery. I started chemo on June 4. I will be getting FEC100, Docetaxel, then Herceptin.
Best wishes girls
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hey everyone: haven't been here for a few days.....but, my gosh so much has happened w/everyone! so many of you are already post 1st round and easing past most of your SE's---congratulations!!!
am still scheduled to start 6/23. jennmarie, looks like we hit it the same day.
haven't ever heard of the chemo bringing back the 'pimple age of life'. what a downer--who wants to be trudging thru the SE's of everything else & then look in the mirror and see zits!
i never thought i'd say that i'm looking forward to chemo, but the deal is i'm just looking to get the 1st treatment past me----it's the 'wait' that's torture for right now. however, in a couple of weeks while i'm sick as a dog, i may absolutely swear that i never said i'm looking forward to chemo!!
it's great to see how everyone keeps the other pumped up about the whole ordeal of everything--guess that's why threads like these are so important!!
hope tomorrow brings a better day than those you've just endured!
deb
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hi everyone!
I am finally starting to like shaved head. I used to have long, thick hair that went midway down my back and I loved curling it and doing it up nice and the last thing I thought I would ever do was shave it! I didn't like to look in the mirror without my wig for the first day because I was so shocked and I felt like I looked like an alien....and the second day I woke up and put on my wig again but today I looked in the mirror and decided I actually look pretty good with a shaved head and I am getting used to it. I talked to my husband about it and he said even when he shaves his head in the summer for the first time, it takes him a couple days to get use to it.
I have been using Nioxin shampoo and condioner in the shower to help with the scalp tenderness, I like it because it has that "minty" tingle and smell to it and makes my scalp feel better. The tenderness is getting better and my scalp hurts less every day. My wig-hair dresser said to use it even when I don't have hair because it cleans your scalp and when you hair does grow back after treatment, it makes it stronger. So if anyone is experiencing tenderness, I definitely recommend Nioxin!
I go for round 2 of chemo this Friday, I really hope it is like my first round with minimal side effects.
I hope everyone is doing well and wish you all the best in your chemo "adventures". We can do this ladies, it is do-able!!
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SKD - what treatment regimen are you on? Thanks for the tip on the Nioxin!
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Hi Ladies,
Re: breakouts. I, too, had some issues with this. A good friend sent me a sample pack of Lindi Skin products, which were developed by dermatologists and oncologists specifically for people going through chemo. I really like them. You can order them at www.lindiskin.com. I particularly like the lavender face serum.
My onc also told me that my skin will be extra sensitive to sun and to wear a minimum SPF 30 everyday.
My hair began falling out yesterday and is shedding at a faster rate today. My scalp is a little tingly and tender. I expect my new cute short haircut will be gone by Friday.
Already dreading the next treatment on Tuesday.
Holli
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