August 2010 Rads
Comments
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I'm halfway through my radiation treatments (18 out of 34 done) and like the post about a glass of red wine everyday. I'm a red wine drinker, so I think this gives me "permission" to drink a glass everyday. It also helps calms the nerves when going through such an exhausting 5 months of dealing with this disease. I thought that radiation would be a walk in the park compared to chemo, but am learning about "fatigue". I have never felt this kind of tired in my life. Counting down the days......
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Carolyn, I'm sorry to hear about your mother. I see what you mean about not having to tell her...I think my own mother might be taking this harder than I am.
As for husbands, mine has been pretty good. His father died in the middle of all this, so that made for a pretty rough summer while I was in chemo. But we both did the best we could.
Hugs,
Jennifer
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Getting ready to to go start my boosts today. So very tired, but can't sleep very well. My emotions are a mess..I want to cry all the time. Yesterday I was a ball of anger, frustration , and tears.
The paper was great...and so on the mark on so many levels. Just can't recall what the papers title was , but it was the one mentioned in the last few postings. I don't want to look or I will lose this post.
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Hey Girls -
You know as I read the last two days posts I'm more aware that what we're all experiencing is the result of the Tx we've just gone through over the past months. And there is little we can do about it. I Identify with each of you on some level regarding this illness: the fatigue, the weepiness, the irritability, frustration, pain, and disappointment. -- just choose your own adjective. I want to be encouraged and to be encouraging as well but most of the time I am neither. I love this site because it's here that people truly understand what it means (in relation to BC) to be tired, weepy, frustrated...... Maybe we should share ways we let up on ourselves and give ourselves space to get through this. I know I could use it, I'm forever wandering what I did to make myself so tired or what I can do to be sure I am getting the proper tx. It's a control issue and I am no longer in control. I need to stop worrying about the 'little things' and not put myself on a guilt trip if the laundry is not washed and put for example. Our job (my job) is to heal, why can't I be satisfied with taking care of myself and let the rest be? My life has changed and it most surely has changed for the better, it's just going to take me a while to get used to it.
Thx for letting me ramble on this time .....
Carolyn
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Along with all this radiation crap I'm waiting impatiently for my hair to come back. Finished taxotere tx June 3 and I've only got a few eyebrow and eyelash hairs, little teeny hairs on my head and it's starting to get cool here. I'm so sick of ball caps. I'm always cold. Going to see a dermatologist about another issue, maybe he'll know something to speed it up. Anyone else in the same boat?
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Hi! On Monday I had treatment 18 of 36 ! ! ! ! I am really fair-skinned but so far I have had no problems at all - my skin is healthy, I have not had a moment of fatigue. How can this be, I asked myself.... I am wondering, and this may have been posted somewhere at one point, do we all get the same dose of radiation each day? I get two forty-five second zaps to the left side of my boob and then the machine moves over my head and I get two forty-five second zaps to the right side of my boob. In total I get three minutes of radiation per day. How about the rest of you? What do you think? Do we all get the same dosage? I am sure the second half of treatment will be a lot worse than the first half.
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Wow - I'm so sorry that any of us are in this boat, but it IS nice to have understanding women to share it with. Thanks for being so honest, everyone. They really should prepare BC patients better and let all of us know how overwhelming that fatigue and depression can be. We are not wimps - we are beating cancer's butt and we are strong and brave and amazing women!! Big hugs to each of you!!! Keep fighting!!!!
That article Latte posted was wonderful and it is good to get that "professional" validation. Now if they would just quit saying all these other things (nausea, achiness, etc.) are from chemo or from our imaginations but not from radiation. Yes, I wouldn't want them to have to experience cancer, but maybe a dose of the "cure" would make them more understanding?? And when people say we're "lucky" ... that gets my goat too. And looking down at my pink boob in the shower and crying, and thinking of this as the "summer that never was," and that I never want to wear another scarf or hat in my life .... I want to go back and comment on so many of your posts about things I can relate to, but then I'd be rewriting half of this thread. Seriously, you ladies are wonderful and I appreciate you all!!!
On Monday I did my last rad. Got kind of choked up when my tech summoned me, and then as I was lying there alone in the room with the eye shields on, thinking of all that I/we have been through, the tears started sliding out and down into my ears. My techs are great, though, and started cracking jokes when they came back in and gave me hugs to send me on my way ... along with a little Certificate of Completion they both signed. Thinking about it later, I wondered if my fondness for them is somehow related to Stockholm Syndrome? After I left the clinic I went to see my sister, cried in her arms for a few minutes, visited at her home awhile longer (until my eyes quit leaking), and then we went and had a celebration lunch together!!! If we hadn't had to deal with picking up kids from school, I think we would have had a few celebration Margaritas too, but now that is on the calendar for one evening next week - two celebrations - yippee!
I am still in my PJs and it is 1:30 p.m. It is really nice to not have to jump up and get dressed and run out the door to my radiation appointment. For the past two days I've been puttering around the house taking care of little things that I've been walking by and ignoring for the last couple weeks. It feels good to get stuff done, but it is almost nap time. I know it has only been a couple days, and maybe it is psychological, but I do feel less fatigued and overwhelmed. I will be getting back to work next week and am anxious about that. I work from home as a medical transcriptionist, but between the chemo neuropathy, brain fog, and the overall fatigue I haven't worked for several months. Wish me luck (we sure need the money).
I will continue with Herceptin infusions every 3 weeks through March, but other than that, I am "done" with this ... hopefully forever. Scheduled a mammogram (doesn't the thought of that squishing just make your boob cry out in pain at this point?) for six months out. Strange to be flying free ....
Hang in there, pink ladies!!! You can do this!!!!
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Annebear: I don't think we all get the same dosage. Some are lumpectomies, one MX and some BMX. I know mine are different each day. Some days the zaps are short-long-longer-short-longer and some days its a different pattern and I am LMX. I think we are each calibrated to our needs depending on where and how much cancer there was. Love that word WAS. But that's a good question to ask a nurse or a tech.
Janabanana Congratulation on where you are now. I remember you from chemo Jan. You got eye shields?? I think I will take in mine from the tanning days, is that what they are like?
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annebear - I too noticed the length of the blasts of radiation sometimes seemed to be longer and asked the tech - she said they were adjusted daily depending on the barometric pressure, that I got the same amount daily. So happy for you - no fatigue or skin problems!!
bubbalu - has you skin improved this week - how's the tx going? And LadyM - any news on your cousin?
Congrats janabanna, pj's till 1:30 - nap time - margaritas for celebration time. These are good ideas on how to be good to yourself. Thx
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Hi Ladies! It took me awhile to read all the posts to get caught up. It's so comforting to have this website to connect with people in the same boat, but sad at the same time that so many of us have to go thru this. Big sigh....
I have 3 more tx to the entire breast & 5 boost left. I can't believe I'm in the single digits! Still just medium-rare looking, no pain, no open skin. I feel a little more tired though! I start feeling really tired at about 1pm or so. I've been in bed by 8p lately. That's ok! It's just temporary. I went to yoga tonight & that felt great. It's uncomfortable to do any of the poses that require me to lay on my stomach, though. The boob doesn't want to be squished!
I've been wondering about followup since I'm close to being done. If this tumor wasn't found on a mammogram, I'm going to be a little worried if that's the only scan they recommend. Not sure what the protocol is... I'll ask tomorrow.
Nite Strong Pink Ladies
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Bubbalu: I only had eye shields for the boosts. They were kind of like round weights attached together with a wide band that they just set over my eyes. Not like the tanning bed kind. Hmmm... must be a different janabanana in the January chemo board (I have two n's at the last "n" 'cause the correct spelling was already taken). I wasn't diagnosed until February. I finished taxotere and carboplatin June 15, lost all my lashes and most of my brows a couple weeks ago (seemed late, but when I read the hair, hair, hair board it isn't uncommon). They are starting to come back now, but the lashes more slowly. The hair on my head is about an inch long now but there are some very thin areas where I can still see my scalp. I think the Herceptin is inhibiting some of the regrowth, but from what I read that is pretty common too.
ECT: Yes, control issues for me too!!! Great insight! (Wish we could all meet up for those celebratory magaritas.)
Julieee: I asked my med onc about a full scan or some sort of screening - all I've had is mammograms and a bilateral breast MRI presurgery. He said that in my situation he didn't recommend it, as it tends to raise more alarms, cause more anxiety, and lead to further (unnecessary) testing. I guess that is because my tumor was so small (6 mm), but my grade 3 and HER2+ status alarm me. I'm going to go with the flow for now, but in another 6 months may push for a body scan ... can't imagine "more anxiety."
DH and I made reservations today to go to a resort on the coast mid-October to celebrate both the completion of this treatment and our 17th anniversary. We're bringing our bucket lists, and I'm hoping my boob is healed enough by then for a nice long soak in the soaking pool overlooking the crashing waves. Can't wait! (Yes, I am "into" findings ways to pamper/celebrate whenever possible!)
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Got treatment number 24 of 33 today - only nine to go. Not as tired today but my armpit down to my SN incision area is raw and painful. It had started as the little capilaries bursting but now has worsened. The rad onc said to expose it to air as much as possible and slather on aquaphor. It isn't possible to expose it to air when I work or most of the time at home unless I stay in my room. Hopefully it will hold up for the last 4 regular treatments and then I just have the 5 boosts. I am tired today but mostly irritable instead of emotional. Seems to change day by day. I really had a lot to think about after reading the article Latte mentioned. I am trying to keep to myself a lot and just get through these last couple of weeks. Janabananna - so glad to hear your treatments are done. How wonderful to celebrate and the trip sounds wonderful. Lady_Madonna - Hang in there - you are still you - but you are going through a lot right now - it is normal to feel like you do. It is part of getting through this. Carolyn - I agree with you that we need to lighten up on what we expect from ourselves. One day last week at work someone was talking to me about how were things going and I just started crying and she joined in crying too. I am not that person - I've always kept things to myself - never let people see me cry but wow now I cry at the drop of a hat. And I now think that is ok - if I feel like crying I cry - if I'm grumpy I stay away from others or warn them that I'm iritable. If I am tired I say so. I just listen to my body and emotions and try to be kind to myself. If I dont feel like cleaning house I don't. I try to think of things I enjoy doing and do them if I have the energy. I really think as women we are so into caring for others and being strong for everyone else we are afraid to let people see what we really are or show how we really feel. Maybe the best thing I can do for myself right now is to be me and honestly own all the emotions and feelings I have. Have a good night everyone!!
Carole
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One thing I have learned from this experience--with the help of all the sisters here at BCO -- is that it is OK to not be "strong" at all times and to show emotions other than happy or at least content.
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ECT- My cousin is stage IV triple negative, cancer is spread through lymph system and chest wall. She has brain MRI tomorrow, starts chemo Monday. She was a bit overwhelmed, couldn't remember all the chemo names yet. She's in Burns, Wyoming. I think she has a bit of a drive to get to the cancer center for her treatments. Please keep her in your prayers! Oh God I pray we find a cure for this dreadful disease soon!!!
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Lady Madonna - I will definitely keep your cousin in my thoughts. She must be petrified, and I hope she has all the support she needs. Makes you wonder why this is happening so much. Mo
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Lady M - I am so sorry about your cousin's diagnosis. Does she have someone near the cancer center she could stay with occasionally? And hopefully family nearby? I am praying for a cure too - please God, soon.
For most of my life I only heard about cancer from afar. Suddenly, in the last few years I am surrounded by it. I don't know if it is an age thing (I am 48) or what, but I hate it. That "Stand Up to Cancer" special last week gave me hope that they ARE getting closer to finding a cure and that the different hospitals and drug companies are finally pooling information and working together. They ARE getting closer ... Herceptin wasn't even available a few years ago and now look at all of us being helped by it!
Try not to let this sidetrack you from healing yourself (physically and emotionally), and when you are better you can be helpful to her. {{Hugs}}
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Well I'm back in the same situation I was before. After the last 4 txs (as it did after the first 4) my neck from ear to ear has reacted to the rads with burn/redness and the radiologist doesn't think I can continue. He said if I'm doing this in a non radiated area after 4 txs he would not be doing me any favors by continuing. I could end up in the hospital for months with a serious infection. So Tuesday we will make a final decision on continuing rads. The 8 (out of 33) will not even be beneficial to me as they are cumulative. He still thinks that I have a chemical in my body that is making me sensitive to the radiation. It's a case where the treatment is worse than the disease. So if I have to discontinue the txs my chances of reoccurence to the breast area (LMX-TN) are 30% instead of the 10% radiation would have given me. He did say that even with radiation txs there is no guarantee it will not come back to the chest wall. The radiation txs also will not prevent it from coming back to a distant organs.
I'm considering checking out on of the top ten cancer centers closest to me which would be the Abramson Cnacer Center in Philadelphia to get their opinion on what's going on with me.
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Hi, Bubbalu - I go to the Abramson Cancer Center in Philly and I love my doctor there - Dr. Fox. I would highly recommend him. Since I live about 40 minutes from the city, you're welcome to stay here if it would make your trip into town any easier. Just let me know. We're all here for each other and I would love to help you out. Take care - Mo
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Well, I finished my 16 treatments and today went in for my 1st boost. Again, I was a little nervous but everything was over in a flash. The positioning took very little time and it was just one zap. I had to go to a different section for the boosts and I really missed my regular team. My skin is holding up very well, only slightly pink. The only area which is a little sensitive is where the scar from the SNS is located. Fatigue hasn't been that bad either. Once in a while it hit me.......it was like suddenly being hit by a brick wall. My husband has been really supportive throughout all this #$**. He actually made dinner most nights.
Then there is the story of "who will be my doctor". My original doctor moved to Miami, the next one that was supposed to take my case never showed up for my appointment and I now have a third different and permanent doctor, I hope.
bubbalo...I'm so sorry to hear about your situation. I do hope that they'll get to the bottom of this.
sharonraew...... I feel terrible for you having to cope with a spouse who also has cancer. No wonder you feel depressed. You have gone through a lot these past few months and this just adds to your burden. Perhaps your family doctor can prescribe something for you. Have you had any results regarding your pancreas? I hope everything will turn out OK.
By the way, who is your radoncologist?
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mofend: That's wonderful of you! I've spent the greater part of the afternoon looking up the website for Abramson and requesting an apt. online. They will call in up to 3 business days. I don't have a lot of time to wait but as my surgery was 7/8 and I don't think they like to wait too long before rads. I've had 8 but the dr. said they won't be effective, they're cumulative. My husband has an aunt in Jenkintown. As soon as I hear from them I will let you know. I understand from the website that they have host housing around the hospital area as well. When they call I will ask for Dr. Fox, your radoncologist I presume. Are you done with rads?
Initally I need to find out if someone somewhere can answer this mystery about my getting burns outside the rad area after 4 txs twice. Surely someone knows! Then we will go from there. I just don't want to give up without a fight as I (like all here) have fought my way this far and done so well considering.
Again, it's awfully nice and gracious of you to do this. I know I would do the same in this situation and will for anyone needing to come to Pgh. We are just outside Pgh. Abramson is rated among the top 10 cancer centers in the country. They must have an answer for me!!!
Will be in touch................ Linda
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Hi, Linda - Dr. Fox is not my radiation oncologist - he's my oncologist, but he's fantastic. I actually had my chemo done at the Abramson Center at Penn and I go to Lankenau for radiation with Dr. Marisa Weiss (founder of breastcancer.org) and she's my radiation oncologist. She's fabulous, as well, and has written several books (Living Beyond Breast Cancer, etc.) regarding bc. Sorry if this confuses you at all, but you're on the right track either way. Great facilities, top notch docs at Abramson (Penn). My invitation is serious - if you need a place to stay during any or all parts of any potential treatment, our doors are open - we're here in a lovely part of the suburbs - rolling hills, horses (other people have horses - not my things!), fields, calm surroundings - great for rehab! Please keep it in mind. I have just finished my 31st treatment - have two more boosts to go and then I'm done on Tuesday! Woohoo. Skin is holding up well - thank goodness. I'm very lucky in that regard. Mo
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Hey all,
As we just got through our busy season at work, I haven't posted in a few weeks. I finished with 33 rads this past Monday 9-13. I was a complete basket case, had the most difficult time fighting tears all day at work that day, and collapsed into those hiccuping, body wracking, gulping for air sobs for several hours that night. LOL I did take a peek in here and saw janabanana's post about the baggage of bc. I think it saved my life as I thought I losing my mind! And, of course, that day and all week everyone is "Oh GREAT! So you're all finished now!" and if they don't understand, you have to try and be all upbeat as if you're SO happy and thrilled to be done and that's all you have to worry about. And obviously I AM thrilled it's done, but somehow it hasn't translated into how I feel from moment to moment this week. Right now, I'm terrified it's going to come back, but mostly it's exactly what that article described - a definite feeling of PTSD, not that I've ever had that before, but pretty sure I fit most of the descriptions of it! And really this is just like me, I've always been the strong and stoic one in a crisis, then fall apart once it's past.
Hugs and prayers for us all...SIGH
I go back to the plastic surgeon to hopefully schedule my surgery next Tuesday, and the onc next Wednesday. Did all of you continue to see your regular (chemo) oncs through radiation, or did they tell you come back in 3 months as soon as chemo was over?
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Hi everyone! Well 26 treatments down and 7 to go with the last five being boosts. I've had a rough few days. Arm pit down to SN site burned and painful. I think some of it might be my fault. I hadn't been going up that high with aquaphor since I didn't realize treatment field was so high. The area burnt is above where I stopped with aquaphor so if you are in earlier treatments go higher with aquaphor as I am now doing lol. Glad its the weekend as it gives me a couple of days to heal and there are only two more tx to that area at any rate. Last night I slept all night which was a blessing - first time in I don't know when thats happened. I was so exhausted when I went to bed I was in tears so maybe thats why. Took off on Thurs I felt so bad but am working this weekend. Hope you all have good weekends. Bubbalu hope you find a place that can give you answers. Love and prayers to the rest of you.
Carole
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Sharonraew- having a husband fighting too must make the stress and worry so much more on you..my brother is fighting cancer and it tears at my heart daily. Just found out they could not do his surgery (lungs not strong enough and his weight is too much) so now they are back to square one looking for a surgeon who can do it with laparoscopicly.
LadyMadonna- Prayers for your cousin. So much cancer so many places!
Babbalu- I hope that these new doctors can find out whats up with your skin..you need every % of the fight in your favor.
Julia- Oh I understand the emotional mess!!! Anger one moment then tears that can't seem to end. Received a bill today from radiation (the insurance was not on it so I hope this is pre-bill not final) $29,000 so far. Told my husband it would be cheaper to bury me and I went back to my sewing room and cried. Between him and I we just don't make that kind of money in a year! And he is looking for another job and it scares me that I may be out in the cold with NO insurance at all. And I have more appointments to go. Friday go to my Gyn for possible hysterectomy.(thanks to Tamoxifin)
Carole- Hope your skin heals fast! Its no fun being so sore and we can't walk around with our arms up all day! lol It may get some looks though!
Doing the boost take so little time now...seems I am up on the table and back off in a flash! I think I have 8 more to go. Will know more Monday.
*question: where the skin is broke open, do any of you seep yellow stuff (lack of better word)
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Bubbalu, Maybe instead of external beam radiation you can try brachytherapy, or internal radiation, where the radiation is implanted into the tumor bed area. It's not done everywhere, but I have a friend who had this method at M.D. Anderson in Houston. It's worth calling around and asking about at cancer centers in your area. So sorry you're going through this.
Julia, congrats on being done! Good luck with the PS!!!
Carole, Hope you are having a nice weekend. Hang in there!
((((HUGS)))) to everyone, and have a restful weekend! We're getting through this! I have two more boosts and then I'm done on Tuesday. I really want to start walking/jogging again- that's my goal! It's finally starting to cool off in Vegas so I think between that and the end of rads I can get back on the "physically active" track.
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Hope everyone's having a nice weekend - the weather is cooling down a bit here in East Tennessee, even the leaves are starting to change - I'm soooooooooo glad.
Lady M, sorry to hear that your cousin will have to go thru tx again. It must be a BIG disappointment esp since it hasn't been that long since she went thu tx. Has she made it to any of these discussion boards? I sometimes check out boards on things like - facing relapse or incredible survivor stories. It's not all doom and gloom, much continues to happen in the medical field that's extending life beyond what we can imagine with this dreadful disease. I think facing chemo again would be the most difficult for me, maybe it's because It's only beens 6 weeks since my last tx. Have been praying for her.
buabbalu, I was hoping to hear your burn was all healed and you were on the way thru your rads. Even with my full radiation, chemo and hormone txs I have a 25 - 27% chance of relapse. Those are just projections to give us some sense of how to make decisions. I'm not sure what to do with that information. And I think it's always great when you can get a second opinion - esp considering how unusual your situation is. And you have an offer on a place to stay to boot, how nice.
Carole, I don't know how you do it - work and take tx's. I'm so grateful that I am not working now. I can come home and nap or take off the bra and air out a bit. I have a high regard for all who work through this process. Makes me want to keep my mouth shut - why should I complain. What courage!!
I have a short vacation planned with a dear friend at the end of the month so I've been having rads on Sat and Sun so I can finish early. I sure hope I don't regret that decision. Only 8 left to go (inclu. 4 boosts). I'm already thinking I need to re-read that article on 'After Tx ends - what next?' Last night I went out to eat and to a movie - it's been months......was fun, even if I didn't understand the movie.
Blessing All, Carolyn
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Carolyn, Let me guess...did you, by any chance, see Inception? Because I certainly couldn't follow that movie with my poor, tired chemo brain!! Next time I'm just going to see a fun chick flick like The Switch!!!
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Sorry everyone for being such a down person these days. Getting out and doing something fun sounds like the best medicine there is!
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Oh, we know each other so well ladies! Or at least our symptoms --- LOL
Yes it was Inception I saw last night Lady M. Called my son to ask him to explain it to me. I went into it cold - no info at all. Spent the entire movie trying to figure it out. Great filming and effects so all was not lost. I'll enjoy it when it comes out on DVD (and I can rewind)....... yeppers on The Switch too. That one I'll get and it looks like a fun movie.
Don't worry about being down here againmine. If you can't be real with us where can you be? Just wish we could all go out for those Margaritas Janabananna was talking about. That just might be some really good medicine ;-)
Carolyn
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I finished my last Boost this past Monday, and on Friday morning, 1/2 way though my walk, I realized NOTHING HURTS, nothing itches, burns or aches. I felt almost perfectly normal for the first time all summer. I was just enjoying listening to the birds and watching the sky change colors as the sun got closer to rising (we have to walk early in Phx this time of year) and I completely forgot about BC. So 2 weeks + 1 day after my last full breast rad, I am feeling pretty all right and hope that helps all you ladies who are wondering when in the heck you are going to start to feel better again. Bubbalu, whenever something goofy happens to me, I always tell myself, I am NOT the 1st person that this has happened to, somebody has an answer for you, you'll find them. Keeping you in my prayers that you find them or they find you! and soon.
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