Winter RADS 2012 Club...Please come join the fun!
Comments
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ODSpot, I'd call your docs 24-hr. number about the drainage, just because you will be out of the country, and it may indicate infection. The itching is fairly normal with new skin & nerve growth and healing.
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I finished day 2/16 of rads today. I am hoping my skin holds up. I wrote done Tazzys recipe for the Saline Compress a while ago.
Boil 1 litre of water
Put water in bow add 1 1/2 to 2 tsp of salt
Cool to room temp.
Get a soft washcloth and soak it in the solution
Put on boob/chest for 10-15 minutes, resoak if necessary
Hope this helps some of you. -
I'm 2/3rds done, actually only have 9 left! out of 30. I'm sunburned, itchy, and even getting a little sore in the breast and pec but I'm not peeling or such. I'm just using lotion a few times a day still. Also, I remembered last weekend about "oil cleansing" and I put a good layer of almond oil all over that area before I showered just to keep it from drying out more in a wamr shower. I hope this holds.
cider8, I'm so sorry for you and your family's loss.
Congrats aliyahgirl!
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Cider8, so sorry. I can't imagine what your family is going through.
Congrats to all those who are done. It is encouraging to see some of you finished as I felt like we started about the same time. I still have 12 more to go, but that's mainly because my RO tacked on my missed appts at the end.
I had the intense itching for only about 3 days. Hydrocortizone cream actually made me itch even worse. Ack! My rad nurse told me to take Benadryl, either the cream or the pills. I tried the pills and it really did help. Only took them for about 2 days and then I guess my skin had healed enough to stop the itch.
You know the sharp pain you sometimes get in your breast? I've been told numerous times that it is just the nerves knitting themselves back together. When does it stop? I mean I still get pain that almost doubles me over and its been two months since surgery. Its always in the same spot which is about 2 inches to the left of where my tumor was.
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jennsmc, my lumpectomy was over 8 months ago and I still sometimes get those. I also had chemo though so that probably slowed down some healing. I've had abdominal surgery twice and it always takes a while for all the nerves to get settled back down again. I'm sure it varies some from person to person but I fully expect to get weird twinges in my breast for at least another year. maybe I shouldn't expect that but I do. Not doubling-me-over kind of pain but sharp twinges nonetheless.
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Hello! I had 25 rounds of radiation with my last one being on 12/31/12. It was a great way to end 2012. Besides mild fatigue, I really had not had any side effects. But since my last radiation, I have had my skin get a lot darker and have been experiencing alot of tenderness on my breast, arm pit and on my side this week. I figure that is to be expected but I am also feeling pain in my back, near my shoulder blade. Has anyone else experience shoulder pain/tenderness from radiation? Just trying to figure out if this is a normal side effect or if it could be something else.
Hope all of you have a wonderful 2013!!! -
Sylndan - I have days where my whole shoulder hurts but I take some Aleve and it goes away. Or I do some stretching and that helps.
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Hey guys, do you think sea salts would work better than regular table salt in the soaks? I am going to try them. My skin is doing great so far, slabbing on aloe at least 5 times a day. I almost hate to start back in tomorrow since all looks so great today. My armpit is less pink and doesnt hurt since the hair fell out so maybe it was inflamed hair follicles.
I know I am only at 11/25 plus unknown boosts at the end, but radonc said that bolus pad doubles the skin effect. Maybe that is why the pit hair left early? What are the boosts like? Do they use some lead barrier to cover the untreated area or what? Can they do more than one a day? -
I am just wondering if I am the only one experience this during my cancer journey.
Here is my story.... In Oct I found out that I have IDC Stage 2, grade 2. The doctors then sent me right away for surgery. After recovering from surgery, the doctors sent my cancer tumor for testing to see if chemo would be effective. I only rate a 17 so chemo would do more damanage than good. Thus the doctors on Dec 21 sent me directly to radiation ( did not even leave hospital... Got test results at 11 am from chemo and then got set for radiation simulation and tatoos at 2pm the same day. Then started actual treatments on Jan. 2) Anyways the people around me are now acting differently toward me because I do not have to go for chemo now. They are acting like I do not have cancer anymore. It is weird.. When they thought I was going for chemo.. They were like oh how can we help you... Now that I am JUST having radiation and taking meds for next 5 years... I seems like no one cares anymore. People have been actually getting mad at me if I ask for help.(husband, extend family and close friend) Yes, it is good do not have to go though the Hell of chemo.. and I may not need as much help now... But I am not cancer free yet... I still have daily trips to hospital, side affects of radiation, etc. I am still on this journey to full recovery. It is going to be a while before I am back on my feet like normal again. Why are people being so rude when I tell them.. I am not feeling well, I need some rest or just to slow my life down a bit so I can recover. I just do not understand. I feel so alone in this journey of mine. All I want is a friend to talk to, a shoulder to cry on if needed and maybe a bit of help if I happen to have a really hard day. I just do not understand the people around me.. It seems like once the doctors said no chemo..that they though that means I have no cancer and they have all turned their backs on me. Has anyone had this happen to them. How did you deal with the loneliness, feeling of hopelessness and sadness of you having no support from anyones. I feel like I could curl up in a ball right now and no one would care if I died of this cancer. I just feel so lonely and depressed. I am usually the one looking after everyone else and their needs. ( to the point my health was effect my Bell Palsey and cancer in 2012) Now I must rest and look after myself. Just because I do not need chemo does not mean my journey is over and things are back to normal. I need to pace myself in what I do as I know I do not have the energy I did before I had cancer. I just do not under the people around me turnong their backs on me now that I am not having chemo. It is just so weird...
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Sachar, I dont know if sea salt would be better, but its worth a go. Let us know what you think. My RO just gave me a bottle of saline, so no fun experiments for me. For the boosts I had, they made a lead template with the treatment area cut out like a stencil. Think playdough fun factory. They lined the template up with pen lines on my chest- looked like a worm on his side, propping himself on his elbow! One zap and you are good to go. Since I had the bolus every day with the boosts I dont think more than one per day is probably an option?
Sylndan, I had shoulder pain too, and it was relieved by motrin. It really has improved since I started PT for lymphedema, as they evaluated everything that is common for bc. They noticed I had lost range of motion also, which I did not see at all. I dont know if you would need PT also, but its worth a thought, just my two cents:) -
Thanks cowpower! I never considered that I would also have the bolus during boosts. Uhg! I thought maybe they would boost more than one area and then zap two a day or something. Unfortunately, I get the daily bolus pad but it is better than the alternative. Thanks for all of your help and encouragement!
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Mother4Life - Ireally don't think people are turning their back on you, they just don't realize that radiation takes a lot out of you. Just the word Chemo makes people "nervous" - they think that's the end. Now they know your going to be ok, the slack off. I am so glad you didn't need chemo. I had a score of 34 and I'm 65 years old, Tuesday is my last chemo treatment, then off to Rads like the rest of you. People think that because chemo is almost over I'll be home free and feel fine in a few weeks and radiation is no big deal- hell, just the daily commute is enough to exhaust you. I haven't expected much help around my house and I didn't get it either. I watch my husband lay on the couch while I make dinner, do the dishes, wash the clothes, etc. I don't vacumn and he doesn't either - had to call in my daughter.
Now you rest and if you need a shoulder, I'm here (resting also), if your caring for young children that could be very hard. The best place to find a friend is on these boards...Day/night, there's always someone to talk to..Don't be so hard on yourself either.... Don't worry about the people who don't understand, just take care of yourself....Your strong, your a survivor, your a woman.!!!! Now put your feet up and go relax!!!
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Mother4life, I too had a similiar experience. Diagnosed in October, surgery in November, and was told no chemo just radiation. At first I didn't tell anyone until I was sure what I was up against. After surgery is about when people started to find out. I still don't think a whole lot of people know. My teenage boys didn't tell anybody. They just don't know how to talk about it and I didn't know how to tell people. Post in facebook or what? However, not a lot of concern expressed here, except the family and close friends. I made the mistake of one day saying I wished I had a mysectomy instead. My husband got mad and said he couldn't believe I would say that because I would be still experiencing and going through it. My response, "you think I am done now?" I am glad that I did not have to have chemo, even though this is no party, I have to remind myself that it could be worse. When I go for my daily treatment, I try remember to pray for strength and for those there with me as well that there for chemo. I have felt those feelings you wrote about, but you are tired and we will get through this. tell your husband and or family you are tired and need help. Sometimes you just have to ask. It's hard for me as well, you think they would know to help. But they dont. but if you ask, I am sure they will be happy to make dinner, etc. Hang in there! Right there with you!
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Thank you for letting me know that others are having shoulder pain. I was starting to get worried that it might be something else.
Mother4Life - I agree as others have said, your friends are not turning away from you but just don't realize that radiation still has side effects. Most people have heard how chemo affects the body but no one seems to talk about radiation's side effects. I know that I thought radiation was going to be very easy but I was wrong. I feel at times that I have hit a brick wall all of a sudden and just want to lay down wherever I am. Hopefully, with time your friends will learn more about radiation and know that you still need their helping hands. -
Hi Mother4life,
It sounds like our cancers are very similar, but I'm a little behind you. Diagnosed 11/4, IDC stage l, grade 3. My oncotype Dx was 18 and I found out the day after Christmas no Chemo. I meet with my Radoco tomorrow a.m. and following that my mapping CT scan. I'm assuming I'll start radiation within a week. (Do they only start on Mondays?) Will I get tattooed tomorrow? who knows? I guess I'll find out tomorrow?
Everything has been such a blur up to now. My husband has been a trooper (and he has MS!) My 18 year old daughter is home on break from college, but she is working quite a bit. My 16 year old daughter is such a typical teenager, so self absorbed. I've been prettty calm about the whole thing, but i feel like it's really just now hitting me. I have Breast Cancer. I'm kind of scared about radiation because it's my left side. I feel alone even though i know I'm not. Are there phases cancer patients go through? (Denial, acceptance, etc?) I know I don't ask for help for myself very well, and I tend to minimize things. But yeah, I guess think it is so easy for people to move on with their own lives. (Your husband needs a wake up call, though!)
I can relate to the loneliness and I guess I feel more helpless than hopeless. I'm so sad for you that people are brushing it all off. (((HUGS)))
If your feelings persist though, don't be afraid to ask your Dr. for an anti-depressant, or sleep aid, or anti-anxiety, or whatever it is you think you may need to help you get through this!!! This board has been something I can really relate to and I'm so glad I found a place where I can voice how I feel with women who can relate to what I'm going through and how I'm feeling. Except for the health care professionals who live this everyday in their jobs, I think only someone who has bc or has had it can truly know what it's like. Please take care of yourself, mentally and physically. If you need a nap, take it. Treat yourself to a pedicure. Hire someone to clean your house once a week for a month or two. Take a walk in nature. I'm trying to stay positive because I know it will help me heal better and faster. You definitely don't need MORE stress right now!!! Take it easy sista! Sending good vibes and prayers your way!
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Slyndan, Yes. I had the same. A couple months after rads finished I had pain on the treatment side of my back, like an ice pick was lodged right next to my shoulder blade. I reported it to my primary care doc, just as back pain. He took an xray, but it was normal. I later mentioned it to my MO and he ordered a bone scan for me. Normal. I had already finished with RO by then, but what would he have done anyway? I kept showing up as "healthy on paper." So, I just lived with it, did stretching (both sides, to try to restore balance) and got myself a few massages and over another three months or so, it settled down and I haven't had it since. I don't know, I just always thought of it as an "exit wound" of rads.
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I actually did ask for something to relax me as everything was happening so fast.. Did not have time to process it and was not sleeping. Dr at hospital refused to give me anything. He told me I needed to talk to family doctor... Only problem is my family doctor is getting old (she has been my doctor for 35 years) and is close to retirement. She takes alot of vacation time off now. Anyways she is on vacation from mid Dec to the end of Jan. So I am S.O.L on getting any help. I talked to a social worker at hospital and she was the one the recomended I ask the my chemo or radiation for something.
As fair as friends/family... I have been left to feel like I am alone. Not much I can do about it. Just take one day at a time. I just worry as I get in more treatments that the side effects will get worse.. Start week 2 and I am already red, sore and run down. I still have another 4 weeks to go. Need to keep up with my 4 young kids. Cross my fingers and pray that someone hears my prayers. I have asked for help.. But people have gotten mad at me for asking. Hopefully that will change. Thanks for listening. Just having someone to chat with has helped. Thanks everyone!
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Mother4life, I was discussing the difference in the way others react to chemo and radiation with my rads nurse at a skin checkup last Thurs. We were saying that people take radiation treatments to be "nothing" because they cant see the effects like chemo. Chemo is " in your face" when somebody is going through it- you see the wig, the pale skin, maybe even the iv port. With rads, everything is covered up and the treatment doesnt sound so bad- no needles, and you are done in 10 minutes. Anyway, I have found this site to be the place I come for support. My friends and family have been wonderful, but try as they might (I live with all males- only my female cat truly understands me) they cant get what I am going through like these wonderful women. I hope you can find the support you need here also. Also, when you get tired dont hesitate to say the hell with it- I stopped doing laundry 5 weeks ago and guess what? My sons figured it out after a while and did their own. Now they have pink boxers.:)
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Hey all! I am officially in remission. But, I still have 12 radiation treatments to go. HUGS to those who need it (ie ALL of us). For those who are worried if the radiation is in the "right" place. They do have quality control programs in place. I bet they are taking XRays every week for you just like they do for me. They just aren't telling you. Once a week they position me and then take XRays and then give me my treatment to make sure it is being done RIGHT!! So, rest assured. They are taking care of you. Feel free to ask. I talk to my techs regularly to get that additional piece of info and so they are VERY supportive of me. They check my skin every day. I just didn't notice at first because of my anxiety and fear. They will have me talk to Dr or PA if they see anything. Tell them they are looking out for us. For those of you doing it on your lunch break. Make sure they know that you could lose your job if you're late. Be upfront. My center calls me if they're having trouble and we reschedule the time if we need to. I'm just a stay at home mom and they know I have to arrange for child care (my youngest is 2). Praying for healing and no recurrences for all.
Becky
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Just completed #12 and am looking a bit red. I am getting ready to try a saline compress, using sea salt. I used corn starch baby powder under my arm at bed last night and did not wash it off as I usually do because I didnt have time. Armpit looks better than the rest! Also noticed the underbooob doesnt even look pink, the other place I put powder nightly. Hmmmmmm..........
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I had my appt. today with my Radonc and then my CT scan and mapping. I talked with the study coordinator for the phase lll randomized study comparing the 3 week radiation treatment course with the standard 5 1/2 week treatment course. I joined the study, had my CBC done, only to find out this afternoon that the computer assigned me to the control group and not the three week group. Bummer!! I just want to get this over with!! All of this "hurry up and wait" is wearing on me. I have to wait for my radiation plan to be prepared (probably another 7+ days). Then I will be called to set up a time for treatment. Boy, I'd really hate to be an impatient person with BC!!!!!
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Hello Winter Rads Warriors:
I know a couple of you asked me to update you on my internal radiation/interstitial brachytherapy process that is now underway. Things are going well and today I began the actual treatment today. Here is what things are like my way:
I flew in on New Years Day, had my consult last wednesday, and the procedure on thursday. Interstitial brachytherapy uses a series of catheters to treat the tumor bed and 2 cm around the tumor site by planting radiaton "seeds" inside the breast. Tiny little plastic tubes that are capped off with these button like endings. They installed a total of 25 catheters that run top to bottom in the left side, and have a bunch of padding around them. All done with a local anesthetic and uncomfortable at the end of the day, but you adjust to them. I have a pretty high pain threshold so this feels minor to me compared to other experiences, including surgeries.
Within a day, we were able to get out and do things over the weekend for the most part. Which gives your body a chance to get used to the "hardware" before the treatment begins.
The treatment began today, which includes 2 visit per day, about six hours apart. The actual treatment time is about 15-20 minutes and you are there 1 hour or less with all that goes on coming in and going out. The catheters have to be kept very clean and they clean the area when I am there, my friend helped me to take good care of things over the weekend. The actual radiation process is not painful, there is no burning, and no expected fatigue. I do feel tired this evening, but think that just comes from the expectations of the first day and a busy day in general.
I will continue with this process 2X a day now for the duration of the week. They catheters come out right after the last treatment on friday and then I leave to fly home.
That is the high level experience, ask me questions or if you are thinking of doing this type of treatment, send me a message with your specific questions.
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My latest blog where I go from zombies to cancer to "Eat Pray Love". I think I sprained something doing it.
http://diaryofamidlifecrisis.blogspot.com/2013/01/walking-wounded.html?m=1 -
Shachar, sounds like you are doing pretty well, nice and rosy! My RO used to say things like, " As you get a bit toastier.... " I dont know whether it will be the same for you, but after the first half of treatment, and you are so close now, YAY! ! ! , they switched me to using aquaphor. Just something to keep things interesting. I am still supposed to use it for two weeks after my last open area closes. I am down to one tiny line of open skin near my scar. Not bad for less than two weeks healing:)
Jazzy, your treatment sounds fascinating! What we used to call " space age", lol. Can they do it that way if you've had an mx? Hope all continues smoothly.
Life, going to check out your blog after these darn kids go to school. -
Thanks cowpower!! I am halfway through normal treatments after my first zap today, 13/25 with two zaps a day. Woohoo! Unfortunately, I dont think they will switch me to anything since I am in their aloe trial unless I drop out. I am using it 5-6 times a day, though. If it starts to look/feel bad I will because I am not planning to fry for science. I am the only bolus pad in the trial so not sure how scientific that is anyway?
Jazzygirl, I would choose that treatment hands down! Sounds like all is going well and will be over very soon.
Well wishes to all of us in groundhog day together! I felt sorry for myself one morning until I met a man in the waiting room getting rads on his rump. Ouch! -
Someone suggested that I edit the topic for this thread and I can only edit my post so I added 2013 to the front. Hope this helps. I need to get a new picture on here with my new hair...it's growing back! I'm so excited!
I took a two week hiatus from work and from the computer. I hope everyone has been progressing well. It sure goes by fast. I've only got 14 more treatments to go so I'm more than half way done! Woo Hoo! Getting a bit red/brown under the arm so I'm hoping that holds up for the next fourteen treatments. Wearing a bra is getting more and more uncomfortable, but who needs a bra anyway! My girls need to be liberated
I'm hating this compression wrap thing for my lymphedema...hating it. Cowpower you didn't tell me this bandage thing would be so horrible! Man I hate it. But I'm a bit claustrophobic so maybe that's my problem. I'm hoping to have my compression sleeve in this week so I can get rid of these stupid bandages.
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Hi
Listening to James Taylor - Fire and Rain - how perfect is that? First of all thank you all for posting here. Sometimes I feel like I am the only one dealing with this - and then there is you. I too have shoulder pain and my under boob is getting itchy. I have 11 more to go - 19 done. It has gone fast. But now I'm getting pink - and I'm hoping that my skin stays OK. I've been using Miaderm.
Take good care buddies
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I forgot to tell everyone that the seasalt soaks were awesome. I did two yesterday and I did have itching during the soaks were I had "fried rash" from the tape. This morning fried rash almost completely healed. Woot woot!
Sonson, glad you are almost done!
Cv marilyn, that cornstarch really helps with my underboob and pit, and I have a big silicine implant on that side. My cornstarch places look the best of all now. I just lightly dust at night after the gel is well dried (otherwise big mess like cake batter). Yep, I woke up one morning freaking out because I thought my pit and underboob were peeling, hahaha. -
Shachar, I think I would have been just as happy to stay on the aloe- Aquaphor is a horrific mess- I have many clothes I dont think will recover. I am interested to see how you make out. I agree you shouldn't fry for science, unless you are Benjamin Franklin:)
Sonson, I have been so worried! Thought maybe you got one of those bandages stuck through a hook or something and were hanging from a ceiling somewhere, just out of the reach of your computer. Really, the bandages suck big time, don't they? The best thing about them is that they make your wrist look downright dainty when they come off, not worth the trouble:) I cant get fitted for a sleeve until I am totally healed from rads. Its coming along, but I think another week before we can proceed. We are assuming the lymphedema attack was caused by rads irritation, so I guess it is wise to wait until all healed, but as you may imagine, I am SICK of the bandages after 6 weeks.
Marilyn, nice to see you entering the home stretch!
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Well met with the radiation onc today and really liked her. I will start 1/28 for 33 treatments, the last 8 will be boosts which she explained are specific site based, not increased radiation. The equipment is 3D which she explained will bypass my heart and only get a tiny section of the lung due to my tumor being below the nipple at 6:00 directionally. I was relieved that the equipment is high tech and she answered all of my concerns about the heart and lungs. I get my planning on Thursday because her baby is due on the 17th. She said she should be back by the week of the 4th which is my second week. In the mean time her associate will fill in. She did say I could use lotion if I wanted to in the beginning, just not an hour before treatment. She said lotions etc would be recommended as they see how I respond. That kinds makes me nervous as she will be out for the first week or so and I really want to be proactive. So is100% aloe the way to go? I have looked around for it but not found it yet. CVS, Walgreens???????
On to the next phase of this diagnosis.
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