Chemo starting in December 2010
Comments
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Hello everyone-
It's been ten days since my third treatment and I've begun to feel the barest sense of this cycle's rebound. This cycle has been challenging with lack of appetite, hot flashes, weepiness, and the general feeling that the sum of the treatments has taken a toll on me. Nausea has not been bad --except for the hour between when the Ativan is wearing off and taking the next one. Just that bit of time reminds my of what could be and I am so grateful for the medication.
I'm trying and have been successful at keeping a good perspective on this part of the journey. Boy, surgery seems like a cake wake compared to chemo. Whenever something gets me down or frustrated or self-pitying, I reframe the situation to its simplest form--this treatment is to rid my body of cancer cells that left on their own will kill me before my time. I don't want to lose those years because there is so much I want to do and see. And I want to deepen the relationships and I know there are incredible people out there that I want to meet and be friends with.
I have also been focusing on how having cancer has reframed what is important. My relationships with my family and friends are the most important thing to me but for a lot of my adulthood I have not given them the proper nourishment of attention. Cancer has driven home the idea that I do not have endless decades to waste. I am firmly committed to not allowing cancer to take that time, but I need to sharpen my ideas of what I'm going use that time for.
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Hi Everybody,
I have really been bad about getting on the computer. I have still been trying to work full time, and the last chemo I had made me really, really sick. I keep posted on everybody. Starting January 20th (my next treatment), my boss is letting me go on short term disability until the end of March, which is my last treatment. It will be hard to get 60% of my pay for a while, but it is worth getting some rest.
I wanted to let everybody know I received my free scarf from Good Wishes the other day. Sunflower71 posted the link a while back, and I decided to give it a try. Let me just tell you how beautiful the scarf is! And it is embroidered with a Swarovski crystal angel, and comes with a card signed by the people in their company. For those of you that joined our group after Sunflower71 posted the link, here is the link again:
http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html
Also, the last you guys heard from me, I was having a really hard time with not only the chemo (horrible body and leg pains), but with the Neulasta shot. My onc even reduced the shot to a half dose last time, and I still could not tolerate it. So she is switching me to Neupogen. Is anyone getting Neupogen instead of Neulasta? Is there bone pain with that as well?
Happy New Year to everybody!
Kim
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ShelMel: For your allergic reaction to wigs and caps. I had the same problem. So at night I put tea tree oil on my head which really does reduce the bumps on your head. Smells and if the smell brothers you get a good moisturising lotion and add it to it. Then what my daughter told me who is in the hair industry is to put baby powder on your head. It works! I was amazed. I am thinking about getting me a stocking cap as well. Best to you!
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Elizabeth - I'll try the baby powder, too. I'm going to the health food store soon, so I'll check out tree tea oil. I'll try anything to get rid of this. It's driving me nuts!
Oh, and I think I read somewhere about using head & shoulders shampoo. I've been using baby shampoo but I may try the head & shoulders.
Kim - I'm glad you stopped in. I must have missed that link - so thank you!! I don't know about the neupogen...sorry. I was so scared to get the Neulasta shot on my 2nd round, but the pain wasn't nearly as bad as the first time. But, I also had pain pills on hand this 2nd time, too. I hate you're having such a rough time of it. Chemo sucks! Hang in there sweetie.
spartina - Amen, sister!! I love your perspective.
Marcia & Karebear - How are you two feeling with the shaved head? I feel kinda liberated in a way.
I'm feeling tired and achy today - took a pain pill this afternoon. Next round is next week (Tuesday) and I just want a few more days of feeling good to get some things done. The most I've accomplished today is dishes and cleaning the kitchen floor. Definitely not typical of my pre-chemo days.
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Joy I was a jock in school. I have good esteem so I just pick a "golf-cap-for-the-day" and head right out the door. Of course right now I am not working. I am getting used to the look. NOT so used to it I will keep it this short when it starts to grow out!
Today is the bad "N" shot day. However, I agree the "C" pill did help. Thanks for the tip!
Bambi
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OK ladies!
2nd round of chemo today.... took almost all day! Between the blood test at 9am, the chat with the nurses and onco at 10, time to eat and the fact there were many patients at the unit today. Worst part: needed to wait on the chair for about 40 mins or so before I got my FEC cocktail, at 1pm. Oh well...
It's almost one in the morning here in Oslo, so far not SE to report. tho I do feel this time nausea is trying to haunt me but with the medication all is fine. When I came back home I just holded my precious baby in my arms, gave her the bottle and put her on my flat chest (the MX one) and oooh we fell asleep together. Was so nice and relaxing!!!! I love these moments....
I'm not very hungry.... my dinner was super simple boiled carrots and integral rice. Wanna take it easy this time...
About hair... I do have threads of short hair here and there and bald spots everywhere! But not gonna shave it, it will fall when it wants... I hope! Used the wig almost all day, since is winter it worked perfectly with a nice knitted hat on. Almost no one noticed it was a wig, even the girl next to me at the chemo unit was sure it was my own hair. THAT made my morning. Now scalp is a bit itchy, ebann I'm SO gonna try the baby powder now!
Good nite everyone hope you all are doing fine....
Joy
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i ate stupid fast food last night. first time since before chemo. we were in a rush to get somewhere and that's what we had,. it sounded good at the time. mind you i am week out from 3rd cycle, so i normally feel pretty good. oh ...my...god.. i had 2 glasses of wine in the night and something did not mix right, at all. i had the most awful heartburn then i puked up acid all night. seriously all night. still do not feel well today but at least got the heartburn down to a dull roar.
ugh... this is supposed to be the "good week", it's not quite working out that way!!!
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Have any of you taken prilosec otc? Yesterday, for the first time since last Thursday, I had acid reflux and indigestion...This morning, I took one and felt great all day! Then I got home and got the mail...a "do not pay this bill" bill...were any of you flabbergasted at the cost of 1 day of chemo? Unbelievable! Thank God for insurance.
klynnwayman....
I'm up here in Carson City... sounds like we were diagnosed about the same time...my next chemo is Jan 20th, too. Sorry to hear about your pain with the shots, my dr. is not giving me any shots...so far, so good.
Be sure to go to gailafund.org - they sent me a beautiful head scarf...soft, black velvet and a really nice note from the girls at gaila!
Have a warm evening!
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Just wanted to respond to Kim re: neupogen. I am on the second week of round 3, going into round 4 of AC DD. I take neupogen, or rather my husband gives me the shots everyday on days 3-10. I usually get a bit of bone pain in my lower back on day 7, but did not last time. Had a bit of pain in my arm, but very minimal like over exercizing. It's probably alot lower dose than neulasta since it is spread out over 8 doses.
Warm wishes to everyone.
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Went to chemo this afternoon. Checked my blood counts wbc are low 1.6. They went ahead and did chemo. I am to show up on Monday for another blood count to see if I need to get a neupogen shot before I have chemo on Wednesday. I did have some aches and pain. Onc nurse told me to talk Claritarin and Alieve the day of and a few days after. It did make differences. The neulasta I finds causes you to ache all over and have more pain. Here is hoping I can do chemo next Wednesday to make my full round. Did not get to finish it last time. They reduced my chemo by 20% too. I just do not want this to be prolonged out longer.
Do your best to hang in there this week you never know what next week is going to bring ya!
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joystars - how are you feeling now??? Hanging in there??
bambi - Hope the Neulasta shot isn't giving you too much trouble.
hdanglebaby - I was craving Taco Bell like crazy last week. I finally convinced my hubby to go get me some. It tasted horrible but I didn't have any of the problems you had. I'm so sorry you threw up so much! Ouch!I hope you're feeling better now.
Elizabeth - I'm sorry your WBC are so low...but glad they decided to give you chemo anyway, even if it was a lower dose. I think the neulasta shot has helped me keep my numbers high. Do you think they could go ahead and put you on that shot instead to see if it will keep your numbers up so that you can get through your treatments without missing any or reducing the dosage? Keeping you in my prayers hun and sending you big, big hugs!
I'm finding myself getting kind of depressed about going back in to get my 3rd round next Tuesday. . . I'm sure that's normal but it does suck. Elizabeth, I don't know how I would deal with as many treatments as you've got to go through, but I guess this cancer crap makes us all stronger in it's own way, huh?
Let's keep kicking cancer butt!! - Shelle
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Good morning All!
I took prilosec otc yesterday for indigestion and acid reflux...felt great all day. Today, I woke up, took the prilosec and now I have HIVES! I took an antihistimine since it was hours before the docs office opened up. Anybody else get hives from this? I looked it up and it is a common side effect! Who knew!?!?!?
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ShelMel: They have had me schedule to get the nuelasta shot but I never seem to make it to that point so they have to plan the nuporgen instead. Nuelast is given after chemo and I have to have chemo every wednesday for 3 weeks with 1 week off. The 3 week is when I am schedule for nuelasta. The nuporgen can only been given to you if you have not had chemo yet. So they plan on giving it to me on Monday because I will not have any chemo in my body for a few days and will be able to get the nuprogen instead cause I am only on my 2nd Wednesday. Thanks for asking. How are you doing?
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shelmel, thanks. i do feel a bit better today. just now if i want a hamburger or something, i think i will just make it at home! but boy, it did taste good going down,just not coming back up!!!
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Well, treatment 3 done, but not without issue, I had a reaction to Taxotere, started feeling my breathing more labored and I guess in two seconds my whole face, including the whites of my eyes turned red. They stopped treatment, added more benydryl and some pepsid ...then slowed my drip...took an additional 1 1/2...hope this isn't alook into how this round is going to go!!
Hope everyone is well, take care.
JoAnn
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Hi all, I'm a little late to the party but I thought I would join in anyway. I have my first treatment on December 31st, woo hoo Happy New Year, not the cocktails that I had been planning on. Anyway, one FEC down and 2 to go followed by 3 Taxotere. So far so good. The few days after were unpleasant but not unbearable, fingers crossed for more of the same.
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shelmel, thanks for asking! Doing better today than yesterday.
Today I slept all the morning and most part of the afternoon, no nausea or headaches at all. DH and mum were helping me with the baby, they were in charge of the bottles and nappies and I was in charge of cuddle her until we both fell asleep... love these moments, seriously! I do feel like she is giving me the power and courage to keep going. She certainly does honour to her name VIDA= LIFE in spanish.
dac, welcome to the FEC wagon! I SO know your feeling about starting treatment just on time for the big holiday celebrations.... I started on the 22nd, perfect for Christmas! Let's keep fingers crossed, so far I'm happy with all the anti nausea meds I got. They are working perfectly!
hdangelbaby, sorry to hear your dinner didn't last long.... but glad to know you are feeling better now.
To everyone, yesterday the nurse tried to insert the IV on my right hand, however the same vein seemd to be "used" not long ago when I had my c-section and was still a bit "bruise and hard" from then. So she tried in the forearm veins and was fine.
But during the cocktail session I really needed the loo, so stopped the process and went there with help of my DH. Today there's a big bruise on the area... a big purple and red spot where the needle was in and a big purple bruise around it... it also feels hard but is not painful. any recommendantions on how to stop the "hardness" of teh area??
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Wow you were all so chatty today!!! I tried to catch up but kids are wrestling so I don't remember 1/2 of what I read!
Spartina: AMEN!!! I have also seen that new perspective as I watch my kids. I take things in so much more than I use to. I is funny how much you take for granted when you are healthy.
Hair: I feel so much better since I shaved my head. I had buzzed it before and just shaving that last bit off has felt so much better. I can scratch my head with out a full hand of hair coming out.
hdangelbaby: Sorry you got so sick. I found that every time we have fast food I get really sick. I don't vomit just feel awful. I made bacon and pancakes yesterday since we had a snow day and the bacon was just nasty!!! I took 2 bites and that was it. It is the first thing that tasted awful!
gailafund.org is great! I got a nice moss green velvet scarf and it is so so soft!! I am waiting on my scarf from the other place. I can't wait to get it!!
Melissa(met her on the CT board) sent me a ton of hats!!!! She was so sweet to pass them on to me since she didn't need them anymore!!! I will have quite the collection to pass on when I am done with them!
I just got new meds for the sores in my mouth. I hope it works!!
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Well, last AC down. Guess that means I have graduated, from the AC at least. Too bad I don't feel like celebrating. The Onc doc said the emend in pill form wasn't being made anymore so they double dosed me on my IV instead. Sure can feel it today tho- I am eating compazine every 3 hours. Last Neulasta shot today too. Doc says no more neulasta for me. Taxol starts on the 26th for 12 weeks. Doc says it is a cakewalk in comparison to the AC. I hope so.
Was really down yesterday and Tuesday, weepy and no reason why. Must be the hormones so screwed up with the chemopause. Doc says I am doing great. Numbers are perfect etc. Sometimes, I just wanna run away tho. My sister inlaw went thru chemo about 5 years ago and quit halfway thru. I can see why. It can really get to you after while - knowing you can stop the madness whenever you want. I am trying to keep my thoughts on the other side of the tunnel as I like the numbers better. My oncotype score was 30. Gonna start counting down to when I can get this port out. Doc said I can get it out as soon as they are done! yay!!! One step towards freedom.
Hope everyone is ok, or getting better at least. Gonna go rest my weary head.
Hugs to all.
Lisa
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sammolisa!!! congrats on your final AC!!! I get my last one on the 18th. And when I feel better from that I will be celebrating! Not sure how yet, as it all depends on how I feel!!
joystars, do they not do port-a-caths in Norway? Or did you not choose to do one? I know it's about 50/50 at my cancer center, but I have one, and I am so thankful I did cause it is one less thing to worry about, only one prick and that's it, and you can move around pretty easily cause it's in the chest. Alot of the older women at the center did not want it so they do the IV.
karebear76, thanks for the good thoughts. I'm making cheeseburgers tonight. sound really good. but i'm definitely doing them at home. not running the risk of the exorcism puking again! lol! although i think it was caused by heartburn, again, from the greasy fast food. but tums seem to be keeping that under control. I have this awful taste in my mouth since it happened. i think all the acid that came out somehow burned my mouth. now it tastes funky no matter how many times i brush my teeth or swish and spit salt and baking soda. tart grape juice helps, but only for as long as i drink it
msjag, i pray your treatment goes better next time, i start taxol in a few weeks also. i get real nervous when i think about something like what happened to you, happen to me. hope you are at least with few to no side effects!!!
well, going to go try a new salad recipe, corn with roasted red peppers, green onions and cilantro. homemade cheeseburgers too!!!
way better than arctic circle, and if you are in the pacific northwest, you know what it is. a fast food chain. better than mcdonalds, by far, but still fast food, and i am swearing off it till chemo is done!!!
(((HUGS)))- angel
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Lisa - YAY!! Congrats with getting through the AC!!!! You have graduated!!
I hope the Taxol treatments go much better for you.
Hang in there sister!! You're doing so great!! It's okay to have breakdowns, cry, scream, rage, vent. Just know that you're fighting this cancer and kicking it's butt. You WILL make it through this. Sending you big hugs!!
karebear - I hope that new mouth med works, too.
joystars - I love your daughter's name!! Vida! That's gorgeous. I'm big on my kids names meanings too. I think names are important. What a special name you gave your daughter during so much turmoil of her being brought into this world. You have a miracle baby sweetie.
DAC - Welcome to the boards. Ick. Sounds like you rang in the New Year with a bit of a fizzle, huh? It sounds like you're holding up okay. Stick around and tell us more about yourself.
This is a great place to be!
msjag - On no!!! That's scary about your reaction!! How are you feeling now??? Are the whites of your eyes still red? Is that a common reaction? That sounds frightening! I hope you're okay. Please come back and let us know how you're doing when you can. Saying some special prayers for you.
hdangelbaby - LOL. Hadn't thought of that. . . I made my hubby go out for sushi tonight after I ruined supper because my taste buds are still out of whack. This makes the 3rd or 4th supper I've destroyed... *sigh* I'm waiting on the sushi to retaliate, but I hope it doesn't. All that salty soy sauce was soooo delicious!
ebann - Thank you for explaining that to me. I hate that you're going through this - again. And with your diagnosis - I'm worried about you. You've been such a wonderful champion here and elsewhere on the boards, I'm in awe of you. Thank you for being here to help us out. I wish we knew enough to help you in some way... I'm keeping you in my prayers too that your numbers stay up and that you don't get off schedule. Blessings my sweet sister.
Raising my glass of ice water to all of you! - Shelle
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Hi Everybody, Just checking in before I go crash. It is good to see everyone so chatty.
Joystars, my 'baby' is now 16, but I still treasure those moments that I snuggled with her. I had a c-section with her, and we would just hole up in the bedroom and snuggle. Those times she fell asleep on my chest were so precious! Vida sounds perfect!
Lisa, I got my 4th A/C today too. Tomorrow the neulasta shot. I have been lucky and not had much trouble with it. Some aches and pains. I think the 3rd treatment was really difficult for me. Today now that I have gotten it I am so glad I do not have to see the red Adrimicin coming at my veins! Wicked stuff!
I also have the taxol 12 weeks once a week, and they are telling me it is much easier to cope with too. The nurse thought at first I would receive it in a 2 week dose and said to prepare for feeling like I was hit like a truck, but said it won't be that way if given once a week.
Today a gal from the American cancer society stopped to talk to me. She said she is a stage 4 survivor-9 years out! It was so good to hear that! She was very helpful to talk about everyday things. I have kind of forgotten about some of the things they offer with feeling so crappy, but she inspired me again to take advantage of some of their activities. I missed my look good feel good- but I got the new schedule and will go.
Ebann, so sorry to hear your chemo has slowed up a bit! Hang in there!
Oh, this might sound funny, but reading about the taco cravings and hamburger cravings made me wonder if the body is craving it on purpose? I have wanted a big juicy beef sandwich in the worst way! If you ever come to Chicagoland you must get one!
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Lisa - Hang in there you are through the toughest part...so they tell us. I am so ready to just be done and have my freedom back. I feel that everything is so tied to how I feel every minute physically and I have no control over it, except the lil bit of mental control that seems short lived.
Now I am struggling with the radiation portion (I know I still have 1 more AC and 12 taxol), however, this controversy with left side radiation and the potential heart damage is a huge concern. I feel like the doctors only concern is getting rid of the cancer because by the time the heart gives out in 10 years they won't be seeing us anymore. We are already living in fear for the next 5 years. Add the heart issue and that stretches it out to 12-15 years. I have done everything right in my life to ensure that I have a healthy heart and so to just roll over and say go for it is a bit overwhelming.
I hear the standard treatment with MX is chemo and radiation generally is given with a lumpectomy. Why do I get the trifecta of mx, chemo then rads.
Anyone else going into radiation following chemo hell? Any thoughts would be appreciated, I have been researching like crazy.
Leigh
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Hi Leigh,
I am going down the same road- AC, 12 weeks taxol, 6 wks of radiation 5 times a week.
I have been starting to have the same concern you are! My sister and I were just talking about hospital tests and how much radiation there is just with a simple CT scan... My radiologist talked about letting my breast being radiated while laying face down so that it is in a 'hanging position' away from the body. She said she was unsure if the position would work and she would have to see when the time comes. :-/
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Wow, we are all thinking alike here about rads. I had my appt with onc yesterday and brought in different research I saw about rads, the seeds, the balloon, and the traditional. She explained that there is research going on saying that three weeks is just as effective as 5-6 but that she believed was in Canada, not in US. I see the rad docts to ask questions in two weeks, I won't start rads until March.
I am much better from the taxoterre reaction. had a great afternoon/night, just been up since thre, thank you steroids, but I will take the steriods without cutting down because of the reaction.
Lisa, Not sure what is meant by the emend not being available in pill form, I just got three pills yesterday to take, one each day. (one was the day of chemo, then for two days after).
Congrats to all who are done/almost done with your A/C.
Got my beautiful wrap from gaila, nice note too. Thanks for the site. Gonna try some coffee, taste is actually ok........so far!! Take care everyone, we will get through this and kick cancer to the curb.
JoAnn
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I am awake tonight due to hot flashes and the ativan wearing off at the forth or so hour!
Joann, Today when I received my last AC, they were going to give me the emend in iv form rather than pill form. Ironically my drug company sent me a box of emend pill form packets, so that was what I took. It must be leftovers from the change over. I am not sure I will be taking these with the taxol?
I got back the results of my brca1&brca2 tests- they are negative.
I showed one 'slight abnormality' on one of the genes that they could not identify. The ONC told me that they are the only place in the country that does the testing, and she said someday if they figure out the significance they will call me. She made it out to be nothing, and I can't worry about something I don't know right ? lol
Cathy
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Good morning ladies
Thanks for the thoughts on Rads, Glad that I am not the only one with concerns on the Rads. I am not sure what the answer is or how much value there is going to be after a dbl mx and chemo but I guess more questions are needed and once the decision is made it is made and we can't look back.
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I'm in a similar position.... because there was a little bit of cancer in the fat around my one positive lymph node, they are recommending rads for me too, even though the RO said I was a borderline case. I am not looking forward to it..... though my acquaintances who have been through it have all said after chemo, rads is much more tolerable, and I do hope they are right.
For me, I am a complete worrier by nature, so anything that helps me feel mentally as if i have done EVERYTHING they throw at me to reduce the risk of any sort of recurrence, helps me sleep at night, I don't even look at the stats, which may be naive. For me, I tolerated the BMX and TE placements just fine, so far so good on tolerating chemo, it's only the second treatment so we'll have to see how that goes.... but what this has done to me emotionally and mentally has turned me into a different person, so this is the path I need to do for myself, even if it might be overkill. I find of all the nastiness of this disease, it's the worry, stress and anxiety that are worse than the treatments and surgeries themselves......
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HI All - had my Day 4 Round 2 dose yesterday and seriously miscalculated my need for anti-nausea meds. By Day 4 of Round 1 I felt pretty good without much but yesterday was awful - it took a long time to get the drugs back in my system and get the nausea under control again. Today is better. I have to admit I am feeling like I have such a long road to go and you guys are all approaching the end of the AC part of your treatment - I'm jealous!!! How wierd is that? I won't finish this trial until end of April, then about a month for scans and lump/nodes out, THEN I can start AC/T.....But, at least I am fully armed with lots of info from all of you guys and that makes me feel like I'm prepared for what's coming.
Like LisaMomofFour I want to do as much as possible so I won'tdrive myself crazy wondering 'what if I'd done more'. I am assuming I will do rads as well given that I know I have 1 positive node and 3 others that are suspicious. Have to admit i haven't done much research yet on rad options and have seen alot of terminology here that i need to go google....at what point in the process does one have to make a decision? I'm assuming post-surgery/pre-recon?
Hoping for a good day for you all!
dlcw
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dlcw -- I chose to have my consultation with a radiation oncologist way in advance.... i will probably start in late April, early May, but I met with him two-three weeks ago. Just wanted to understand what it would entail, for me, the more "knowns" i have in front of me, the easier I can deal with everything. also could pass along the info to my PS so I better understand how rads changed that timeline, which changed significantly since they want to irradiate lymph area AND chest wall (even though they indicated may be overkill) then my PS wants to wait four months after rads are done before even considering doing the exchange surgery. Thank goodness that I am now used to the TEs even if I don't find them comfortable, I certainly find them tolerable, and that definitely was not the case a month ago.
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