After Radiation
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Lestwin good for you I had to do the same thing a couple of months ago. Was not comfortable with the first MO I had, now I love my new guy. My RO scheduled my first mammo, and my MO will do the scheduling from now on. Unless I happend to see my BS and then she will do it. When I go for mammo's I give them a whole list of everyone that wants the results.
Jo sorry you have feeling fatigue. I think I read were it can last 6months after rads. I am not fatigued like I was during rads, but by the weekends I am still needing my naps. I would love to make it through a Saturday without needing a nap. But during rads I took one every day so I am better. Do you exercise at all? I do it makes a huge difference for me. I do yoga and walk and my DH just gave me a bike. So a girlfriend and I are going to start biking together. She is also in my yoga class. ((HUGS))
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Sherry - I have a dog that gets walked 4 times a day for about 20 minutes each time plus I am moving around at work all day. There is a lot of physical labor that has to be done in the summer so my backside does not see a chair much. I do take naps on the weekends - did that before BC so that is not unusual. I do have the advantage of having access to a pool whenever I want and I can go do water aerobics or swim laps. We also have our own exercise room that is air conditioned and has a TV in front of the treadmill. So I have no excuses not to exercise. The fatigue does come and go and when I feel it - it is like hitting that wall and I have to stop. I know this will pass but in the meantime it gets terribly frustrating. I want my active life back!!!!!
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Jo I would talk to the Dr about it just to make sure everything else is OK
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Jo1955: Maybe you're just expecting too much of yourself? I was in a meditation workshop this weekend, and had a lot of difficulty. It turned out I was sitting next to a woman with Her2+. She'd had chemo and rads. She said she couldn't go deep in meditation for at least 6 months after...and it's meditation for crying out loud. She said "Be kind to yourself" so I replied with "That's not always easy to do" As many of us would probably agree, many pieces of advice are so easier said than done. Equally so, returning to our before BC days, are also more easily thought about than accomplished. You already very active...the rest will come back...just give it some more time.
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Hello all my wonderful sistas...hope this monday finds everyone in good shape.ha.yeah right.i went to pa and had a wonderful time.tried to get the bras there.yeah right again.all kinds of stores there.nada.soooo im wearing a huge ace bandage(not too tight)wrapped all around while the harness drys.no one makes those things anymore.I think im gonna need it special made if the edema doesnt go away.goin to see the RO on wed.the women who was the fitter told me about the ace bandage as an extra and also told me to continue with the PT.that drs do make lite of mild edema and lymphedema.
i too still get the fatigue 3 mos out of rads.TIME THE GREAT HEALER.
Chevy-glad your doin ok...TORI-can you tell us some of your exercises that you are doin for the lymphedema????my PT told me the exercises are the same for both.do you manual massages?how often?just lookin for info AFTER THE RADS...ha.
I read the posts but damn i forgot the rest....hugggggs to all of you.thanks for keepin this thread alive.we need all the info we can get...
does anyone know if the ace bandage is ok for the edema??????
WHERE IS THAT DAMN VACINE FOR CANCER??????
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GirlFriday - I really appreciate your words about meditation...it took her 6 months? That makes sense, I have thought about trying to get more grounded, but my mind always seems so buzzed I can't meditate. I think I will keep trying.
Jo - I think GirlFriday's words are excellent. I kept calling my MO nurse and she kept telling me that my body had been through so much and to give it time and the problems would dissipate. I still have some issues, my boob is still real pink, I still have some chemo brain or PTSD, I had that stupid rash that has cleared up now, then last night at about 9 pm I suddenly realized I was completely pooped and better get into bed before I fell asleep standing up and I was out as soon as I hit the pillow. Course the tami kept me hot and cold all night, so I was on and off with the covers all night and doing my usual routine to the bathroom to pee and drink more water - sheesh! I sure hope you start feeling better soon and def check with your doctor.
granny - that sounds awful about trying to find bras and now you're all wrapped with ace bandage? Hon, that sounds fuglier than the big bra! Actually you proly look like hot stuff all wrapped up!! So glad you had a good day in PA, wish I knew what to do and if the ace bandage is good for edema, I would think slight compression would be good, but good idea to see your doctor.
Happy Monday to all and big hugs!!
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GirlFriday - I probably am expecting way too much of myself. I thought that once "active treatment" was over that I would return to some semblance of "normal" rather quickly. Guess not. I am learning to be more patient and taking things one day at a time.
Beans - I am going to talk to my MO - have that damn "burning sensation" back in the BC boob and it is driving me crazy. My breast surgeon did all kinds of testing and could not find the source of the problem. I think I need to see what the MO has to say - sort of like a second opinion. I don't let it stop me though - I just deal with it and go on.
All you ladies are so great - I need a few encouraging words every now and then - that is why I come here - ya'll get it.
I think a group hug is in order.
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Beans-the bandage is really fugly.my GD said are you really gonna sllep with that thing on...i said HELL YEAH. she said GOD LOVE YA...she is a size G.ha.DD is small next to her.It actually feels good.just hope im not doin any harm because im really good at doin all the wrong things lately.Wed should tell the story
about the meditation----i used to be heavy into it...i still try every now and then but my mind is still a jumble...but i do try at nite just before i go to sleep.you have to keep tryin and it takes a long time.i have some tapes that help...
jo jo---yeah we do expect to be done AFTER THE RADS....dont we?????i too when i first started this thread was just thinkin of creams,soaps etc.who the hell thought of lymphedema or edema or any repercussions...no one told us the beat still goes on...We are all tryin to move forward from this monster....AND WE WILL....baby steps....shit that does suk.
Chevy must be in her garden planting some beauties.i sure hope she is wearing those gloves.
here is a group huggggggggggggggg from me too.Kantalope
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God love us!!! The beat still goes on!!! Group hug very welcome!! (I dint know there was a size G, wow!)
You galz are fantastic!!!
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I completed radiation on 9th February and I still am not myself. I still have discomfort in the radiated breast. I am exhausted most days. I have no fight in me, (been battling a sinus infection for 5 weeks). I do not sleep well, am rather blue at times and my list goes on and on. I hate this disease and all it does to all of us. I have no idea what my real life will look like as I don't even know myself really well right now.
just trying to breathe. . .
Teklya
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Teklya---been thinkin of you just a few min.ago.didnt you think we were done with all this crap once we finished the rads??????????????
and a sinus infection for 5 weeks.i sure hope you went to the dr.more then once.you know me i would be drivin my dr.nuts by now....im soooo sorry you are not feelin well.
its just gotta get better.i keep tellin myself over and over again its gonna get better.we went throu the worst part....and every time i think of you i say to myself just breathe....
there is a wonderful breathing exercise.in throu the nose for the count of 5,hold it for the count of 5 then slowly exhale to the count of 5....3x....it works and it also helps relax for meditation and falling asleep.cant hurt...
hugggggggggggs to you sista.We will all find the new person we are gonna become....we are only out of the rads for 3 mos.look at me givin the advice when i wanna rip these bandages off and scream IM DONE WITH ALL THIS SHIT TOO.......
i want the vacine and i want it now....and yes im havin a temper tantrum....
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Hi Gals! Wish all of you felt better! I'm just relaxing now...I've been working my butt off in the yard, getting the swamp-cooler ready, bathing little dog-face Lacee, & I just showered. I felt like a mud-pie. Now I can relax! Here's a group hug also Jo! Ha! And a "Whack" to everyone! xoxo
xoxoxoxoxo
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Jo you need to ask the Dr's if your burning could be nerve damage. I had burning from my SNB site that radiated down my boob behind my nipple. Then I had stabbing pains behind my nipple. Now that I am on meds It is very faint and comes and goes. Also you just did get off of Lyrica. If it is your nerves the Lyrica would have kept it from hurting as the surgical nerve damage is a type of neuropathy. My surgeon thinks mine is from the surgery, but I do believe that rads aggrivated it and made it worse. Unfortunalty none of the drugs that they give you are wonderful, they all have their own SE's, like we need more of that. I am taking Amitripyline 25mg and it is working, but have dry mouth, constipation (so I have to take stool softners) and blurry eyes off and on. Also increase appetite which I have to watch, I don't want to gain weight. Hope you find out what it is.
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Sherry - It is mos likely nerve damage. The CT and Bone scan I had done in Jan did not show anything and my BS wanted to send me to a pain doctor to perhaps try and block those nerves. I refused at the time since I was sooo tired of seeing doctors. He completely understood and told me I could come back anytime for a referral. Not sure I am quite ready for that yet. It has been nice not having to sit and wait to see a doctor.
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Jo my BS said that if the meds did not work then she would send me for a nerve block as well. Something about that sounds very scarry to me. Luckily the meds have worked for the most part. When I do get the pain it is much more tolerable. But then again who wants to be on meds like that forever or have nerve blocks done forever. None of the alternatives sound great.
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Teklya - I hear you on still not feeling "myself" and I finished at end of Dec so now I'm about 4.5 mo post rads. My rad boob is still pink and has a weird assortment of sensations throughout the day, from itching inside to little jabs of pain, then there is still numbness and tight feeling from surgery. I also don't sleep well unless I pop and ativan and I hate doing that, but sometimes I just need a good night's sleep. I have a perpetual worried feeling and knot in my stomach, anxiety, depression, PTSD, whatever. I really hear you about hating this disease and what it does to us and sh*t about that sinus infection! Hope that clears up soon. I like your remedy to BREATH! I know I do feel best when I'm getting some exercise. I think granny is right time will help us too. I'm so glad we have some group hugs going on - big hugs to you!
Granny - When I think back to how I felt on chemo and how glorious it felt to have that end, I do realize how much time helps. This recovery is not just a straight line up though, gosh there are some twists and turns and sometimes I get so fatigued I feel like I'm going backward. Then when I get some rest I feel better again. I love that breathing exercise. All through chemo I would take a break and lie down and do some deep breathing. Now that I feel better I forget about those simple things, so I'm going to do it again! Pullleeeeezzzze lemme know when you find the vaccine!
Chevy - thanks so much for the group hugs, those pics are so wonderful! You sound like you're doing great!
Sherry & Jo - I was thinking about the burning sensation you've been talking about...mine is definitely like an itching inside and it borders on like a burning sensation, I keep thinking it's just the healing process and will go away with time. I really hate the idea of more meds so I will suffer through for now. I'm so glad the Amitrip is working for you Sherry.
Jo - Amen to feeling tired of seeing docs!
Thanks so much all of you here for sharing what is going on AFTER rads...as there is still a lot going on and it helps me to feel more sane knowing that we are puzzling and suffering through this together. May time be the healer!! Hope you all have a great day!!
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Hello ladies, I am not having RADs yet, still in Chemo but its coming. I was wondering if anyone knew this... during RADs are you allowed to be around small children? My daughter heard with some you have to stay away from kids, does anyone know anything about that?
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ginger I have not heard that. The only thing I was ever told was when I had a Pet Scan was to not be around babies and pregnant women for 24 hours.
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Ginger - I was told that on chemo it would be wise to flush several times after using the rest room and that some toxins could be present in the rest room from chemo...was told that rads does not make you give off radiation though, so I wasn't told to stay away from children for any of it. I did have a Bone Scan an a PET/CT Scan, I recall there was a short time after that to stay away from children after one or both of those, I'm sorry I don't recall all the details, so would double check with your doctor. Congratualtions on getting through chemo - YAY! Rads went a lot faster and was much easier for me so hope it will be for you!
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Beans - The pain in the boob is a burning/itching sensation and has a tendency to move from right to left of the nipple. This has been going on since Jan 2nd - so what, over 5 months now. I don't have it everyday - heck many days can go by and I am fine. Makes the brain think some crazy things. Don't want more meds - if it comes down to it, I will live with it cuz it is tolerable. No, we should not have to live with any kind of pain but I take enough crap now. Doing the nerve blocks - no guarantees it will work - not willing to take that chance right now. I have my mammo, gyn and onc all next month. Haven't seen gyn since last year before dx and I know I will get groped by him - maybe a new perspective will shed some light - who knows. I do see my breast surgeon again in Sept for a 6 month follow up and if all else fails, I can ask him again. He has already done the bone & CT scan - both were negative. Hopefully no more BS visits after that.
Whew! I just wrote a short novel - but all this seems to make more sense to me when I can go back and read it.
Hugs to everyone
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well ladies im in a shitty mood today...again with this bra.i thought the wrapping with the large ace bandage was ok.thats what the lady in the bra store said.well the ladies on the lymph thread told me no.GRRRRRRRRR.back to the harness.and i was also told that lymphedema/edema is one of the same.not according to my therapist...gosh im soooo confused.Im goin to the RO tomorrow for my reg.checkup.HE BETTA HAVE SOME ANSWERS FOR ME....
I never heard anything about staying away from small children during rads.The Dr. would have said something right?or maybe not.who knows anymore.the more i learn the worst it gets.
i have a freind with bc...she dont know nothin and dont want to hear nothin either.she does what the dr says period...maybe she is better off.or just maybe she is the one in a million who has no problems at all.
Thank God for this thread...now if someone could find me a bra i would be a happy camper.right now im pissed.
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Granny - How frustrating! I would do what my therapist says - reading of what others is doing is not always a good thing. We all know there is a lot of conflicting information out there and it can get sooo confusing. Wait and see what your RO says tomorrow. Just relax - if the large bandage was working then stick with it. Stop stressing and do what is good for you. Each one of us is different - you know that.
Sounds like your friend is in a bit of denial and getting through this the best she knows how. You did not say how long ago she was diagnosed. If it was recently, she may need some time for the true reality of her situation to sink in. Be the friend that I know you are and support her.
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Jo and Beans I have a pretty high pain tolerance and my burning was off the chart bad. I kept thinking it would get better and it only got worse so by the time I called my BS I was ready for anything to make it go away. Not crazy about taking more meds but beats the pain. Mine is definite radiating burning down the side of my boob and the stabbing pains feel like someone jabbing something between an ice pic and knife in my boob. Not that I really know what that would feel like but I am imagining. hehe I have had the itching sensations with all my surgeries that I have had (lumpectomy, feet, and neck) so I know that is nerves reconnecting. This is defiantly something different for me. Where my tumor scar is I have had the itching in that location, but that is on the opposite side of the breast from my SNB site which is where the burning is coming from. I don't want to be on meds forever so I will probably go through with the BMX and just be numb instead of pain.
Granny listen to Jo she is giving you good advice. Hope you get out of that shitty mood you are in, that is not a fun place to be.
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Sherry - Not to beat a dead horse into the ground, but the itching/burning is just around the nipple and does move from one side to the other. It is tolerable but not fun. I will probably finally get tired of it and then do something about it. I really think it has something to do with having radiation - I would not dare go back to my RO - he would deny it and most likely wouldn't be able to figure it out anyway - he was such a moron.
Life goes on and this too shall pass.
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Granny -
I asked the question about being around small children during radiation treatment to everybody I ran into who should know and they all said it's fine.
Below is the FAQ on it from a radiation brochure:
Will I become radioactive after receiving radiation therapy?
No, neither you nor your clothing will become radioactive, and you can't take radiation home. It is safe for you to be around small children.
The concern comes because there are some forms of radiation treatment during which you can't be around other people. These are internal radiation methods where they implant radiation seeds directly into your body in a balloon or catheter. I think you're usually in the hospital with a radiation warning sign on the door while this is done, not walking around in the world.
Others no doubt know more about these procedures than me. I just know that I've had it confirmed to my satisfaction that you're OK around children when you're having the external beam radiation.
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Granny - I mentioned to my BS that I couldn't find a bra to fit after rads. He gave me a prescription and the name of a shop that specializes in fitting BC problems. The bra's can be expensive but Medicare and many insurances cover them.
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Holy Cow Princess Kantalope! I thought you already WENT to the Doc's and they told you that is not Lymphadema, but it is Edema! So you have to believe SOMEone, & it's best to believe your Doc! Okay now, read this.....
I copied this from an article on the Internet! So now you can just come to me, & I will FIX you! Ha, ha! Honey, wear whatever is comfortable! And do what your Doc's say! Dang, it is so hard to teach you anything! Man, these little Italian Jersey girls are VERY hard-headed! Are you sure you're not from the Jersey Shore?
Those girls, I'd like to slap them!
And Jo & Sherry! I'm so sorry about your problems! But does that mean I can't WHACK you both? I'll smack you around your butt or legs....THAT way it won't hurt! Hugs to you all! xoxoxoxoxo Edema and Lymphedema Compared
Introduction
It is important to understand the differences between edema and lymphedema. Although both conditions involve swelling, these conditions have very different causes and are treated differently. The table below compares these two conditions.
Edema
Lymphedema
Edema is the body's normal response to an injury such as a sprain. As healing progresses, the excess fluid leaves the area and the swelling goes down.
Lymphedema is condition that occurs when the lymphatic system is impaired to the extent that the amount of lymphatic fluid within a given area exceeds the capacity of the lymphatic transport system to remove it.
Edema is usually caused by excess tissue fluid that had not yet returned to the circulatory system.
Lymphedema is swelling caused by excess protein-rich lymph trapped within the tissues.
Edema due to an injury, such as bumping into something, is caused by additional tissue fluid coming into the area to help with healing.
Lymphedema impaired tissues respond to injury with slow healing and/or a potentially serious infection.
Edema is also caused by circulatory system problems, such as chronic venous insufficiency, and this swelling usually occurs in the lower areas of the body.
Lymphedema is caused by damage to the lymphatic system and this swelling occurs near the affected area.
Edema swelling does not leave a mark when a finger is pressed into it. This is known as nonpitting edema.
Lymphedema swelling leaves a mark when a finger is pressed into it. This is known as pitting edema. This occurs only in the early stages of lymphedema.
Edema due to some causes can be relieved with diuretics.
Lymphedema is harmed, not helped, by treatment with diuretics.
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Thanks chevy butt would feel better than the boob that is for sure
Jo we seem to have many of the same issues. We are def going to have to meet up one day0 -
Chevy - Butt or legs would be much better than the boob unless you took aim at my right side. Since you started it - WHACK WHACK
Sherry - You are so right. Seems we have had the same problems for quite some time. We will meet up one day.
Kantalope - Where are you????? Hope your back is not giving you fits.
Sleep well everyone xoxoxoxoxox
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Really sick of this shit, and all that goes with it..............I'm usually a fighter, but its beginning to get me down...... I just wonder sometimes if its all worth it...................then I see my kids, grandchildren, and great grandaughters and say.........yea it is,................I have a plaque in my kitchen that says ""Give me patience Lord, but give it to me now".............that is where I'm at right now.......
The only friggin good thing about all this bullshit is I'm ahead with my scratch-off lottery tickets, other then that it all sucks.................Sick of it.
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