After Radiation
OK NOW WHAT DO WE DO?
I finished the Rads 3 weeks ago.Now What???
Kind of cream?deoderant?soap?exercise?etc.
How do we get back to our life before BC?
And how long is this process.I would like to hear from other sistas what they are doing and how they are feeling after the RADS are over.
Comments
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Grannydukes - When I finished rads, it was kind of a odd feeling not to have to drive to the rad center every day. I had my zaps late in the afternoon so I could go staight home and rest if I needed to. I quickly got used to not going after a few days. As far as creams go, I kept using Aquaphor for about 2 weeks after then went back to my normal routine all the way around - creams, deodarants, etc. I did not burn terribly bad so I felt I could resume my normal activities. I think one can exercise as soon as they feel they can. Radiation fatigue accepts each one differently so there really isn't a guideline for that.
How do we get our life back? That is certainly a tough question. First, define "normal" There is no such thing anymore. When do we start doing the things we used to do and feel good about it? That will differ with each person. I try every day to do things that distract me from thinking about BC and it helps when you don't have multiple appts.
Hang in there - you will get there.
Hugs To You
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i tried my regular body cream under my arm where the SN was removed and had the rads but it burned sooooo im still using the claendula cream 2x a day.afraid to change.snother gift from the bc.my burn was not that bad either.Neither was the fatigue.the best way to describe it was doable.
My biggest problem is the bras.i took all the underwires out of my old as well as my new bras.Itseems everything catches me where the wire is under my arm from the SN biopsy.
Perhaps some sistas will come on here to share what their new normal is????I am soooo ready to move forward and I really am but Im still lookin over my shoulder.
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First, stop looking back over your shoulder. You will hurt your neck LOL! Second, try either a sports bra or a camisole. The camis are soft on the skin and loose. I know of others that worn them throughout rads and they liked them.
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I finished a week ago yesterday and had a followup with the nurse today. She shared something which I haven't read elsewhere: once your skin has healed up, keep using some kind of moisturizing lotion or cream for 2-3 months, and instead of just patting it on the skin, gently massage it into your breast twice a day. (Or if you're really lucky, perhaps you can get someone else to do it for you!) The idea of the massaging is to prevent the formation of scar tissue so you don't end up with a hard boob.
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the cammies are ok but this pest needs a bra.34dd gets in the way.i just found a real old bra that is cut just right.gonna try it later.i guess i should go to the bc bra store to get fitted for their special bras.
i am massaging the calendula gel 2x a day.what kind of cream????my skin is real sensitive and im willing to pay the price but no one mentioned a brand after rads.im using baby lotion on the rest of my body because i was told by dr.to read the labels and not to use anything with parabins.any help here????
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My RO told me to use a vitamine E cream for three months post rads. I also go back for a follow up so I guess he will tell me if I need to continue using it after that. I cream morning and night. As long as I keep having all these Dr's appt not sure what normal is. Maybe in a few months things will slow down a bit. Just trying not to think about bc quite so much these days.
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Thanks Sherry for the answer-Vit.E--sounds good to me.my RO told me to use my usual cream which was udderly smooth but it burned.Thank you.
I still look at life sooo differently now.Was this the great awakener?from what?for what? Im just tryin to sort things out in my head.I thought I was gonna get off this merry go round.Just wondering if i ever will or is it just too soon.I think I lost ME.
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Grannydukes--you may want to check with your insurance company about post-surgical bras. I went to Nordstrom's right after my lumpectomy and all I needed was a prescription from my surgeon to be faxed to them. My insurance covers 4 bras--I got two made by Amoena and they are really comfortable. If you can get to a Nordstrom's, call them for an appointment with the special fitter--this was a great way for me to get new bras without any out-of-pocket costs.
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thank you BrilandtGirl---I went to one of the bra stores where they fit you from Medicaid.Would you believe every damn one of them were cut just where my wire was insweted from the SN biopsy.My old 3 bras are the only ones that are sooo worn out that the elastic dont rub the wire.
gosh---that should be my biggest problem.right?????maybe in a few weeks or months it wont bother me sooo until then ill just wear the old ones.I have no idea why i kept them.I am a real bra nut...too bad non of them work right now.
Tomorrow will be 4 weeks out of the rads.still a little fatigued but really not bad.And im still using the calendula cream on my boob and under the arm.hey its workin for me....hugggggggs K
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Nine months out from radiation, my left breast is finally healing in that it is getting softer again. I have been wearing the bra that is comfortable waiting for this moment. There are a couple of others I alternate with. So I would caution against spending money too quickly if you have something that works.
One of the positives from the experience is that I am following the advice of Mae West in that I rub a nice skin cream into BOTH breasts on a daily basis.
As I had chemo, there is a lot of waiting in the hair growing out process. Ditched the wigs shortly after finishing radiation, but that meant dealing with uber short. That was fine, but the next stage wasn't. Finally getting to a style I might have chosen on my own.
It takes some time to process this experience. It helped me to go back to doing endurance events. And screwing up the courage to network again professionally, difficult until you get past the hair thing. As I remained fit and was only missing a couple of chunks of flesh, I didn't have body image issues.
Little things can throw you off too. As in the first time I went skiing again just before Christmas. I just pushed through and was fine the next day when I got back to the trails I love. That sort of thing.
But don't toss your bras until your breast heals. Because you can't tell until you heal what will be comfortable. You will be laughing about this one year from now wearing your collection of fabulous stylish bras.
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Thanks Claire----im gonna do just that.Your story give me and all the sistas hope.Just wish more of them would post their experiences with what creams they use????soaps????Im still sooo nervous about even changing the creams.AND the shampoos.Now im reading about Parabins.I never heard of that.but i dont buy anything with it in it.
AND the hairspray....i dont think i should read so much.i picked up a can of hairspray and the first ingredient was something with ether in it.hey years ago when i had my first kid thats what they gave me to put me to sleep.YIKES.what next.
Just glad that the rads are done.YAY> hugggggggggs K
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I finished rads on Jan 24th. On Feb 28th my breast started having a dull ache deep down. A couple of days after it started I spoke to the rads nurse and she said oh that is normal take Aleve. I am allergic to it and told her I had been taking Aspirin she said Tylenol works better. So I have been taking Tylenol every since and have now gone back to Aspirin because it works better. Yesterday I started having tightness in the muscle that stretches from your breast to your armpit. Was very tight all day (it does not feel like cording). I do a yoga class twice a week so I stretch those muscles on a regular basis. Anyway the girl next to me in yoga last night noticed I was rubbing my muscle all night so she asked me about it after class. She is a PT student graduating next month. She said that it is very common after rads and has become even more common with lumpectomies. She gave me several stretching exercises to do during the day time at the office. She said you do not want your muscles to contract because it will really cause you problems down the road. I have been massaging twice a day with vitamin E cream per my RO's instructions. I go back to see him the end of April. My muscle feels better this morning but will do my exercises as the day progresses.
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SherryC - I noticed the same thing. I do Yoga also and when doing the Shavasana pose on Wednesday with my hands above my head I noticed there was some pain and tightness. I am always tight when my hands are above my head when on the floor due to being on the computer all day at work. Guess we need to make sure we stretch the arm more. Thanks for the info.
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Valgirl I am also on the computer all day and wonder if this aggrivates it as well.
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Sherryc - My Yoga teacher can't believe how tight I am with my ams. She says it is the way we hold ourselves hunching over the computer. So I do try (not as often as I should ) during the day to put my hands above my head and stretch back to try to keep flexible. I'm sure the way we hold our bodies when on the computer does aggravate the situation. Try doing the stretches during the day.
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Saw my MO on Friday and ran into my RO at Relay for Life and disussed my breat issues with both of them. Basically they said this is common after rads. It is the inflammation from rads that is causing it. The advice i got was to use ice pacs a couple of times a day and also ibuprophen or aleve which I cannot take so the RO told me to try Celebrex. He said to try my husbands over the weekend and if I did not have a reaction and it worked to call him on Monday and he will call me in a script. I have been icing down all weekend. That and the Celebrex are working. My breast has not felt this good in a month.
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I am very glad to see this thread coming back to life.We do need lots of info after the tx.
I have a question.yesterday i helped my neice clean string beans.he thats not hard right?just cutting off the stems of a couple of lbs. today my breast swelled up.not a lot but enuf for me to notice.im a 34DD but large under the arm.its now large under the arm.I did swell up a lot during the tx.but the swelling did go down.SHOULD I BE ALARMED???) i do daily stretches since i had the first of3 lymph node surgeries.i can still raise my arm real high with no discomfort.
Does anyone have any input?????
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Hey Grannydukes -
Why does your diagnosis profile keep changing???
I've seen 4 different ones for you just within this month of March
1) on 3/8/2011 it said DX 4/15/2010 LCIS, 1 cm, stage 1, grade 1, 1/1 nodes, ER+/PR-, HER 2+
2) on 3/9/2011 it said DX 4/15/2010 LCIS, 4 cm, stage 2, grade 2, 1/6 nodes, ER+/PR- , HER2-
3) on 3/13/2011 it said DX 4/15/2010 DCIS, 4 cm, stage 2, grade 2, 1/6 nodes, ER+/PR- ,HER 2-
And now TODAY it's DX 4/15/2010 LCIS, 4 cm, stage 2, grade 1, 1/7 nodes, ER+/PR-, HER2 -
What's up with all these changes?
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MarieKelly----the answer to your question is a hard one.i had r different drs.3 surgeries but bottom line is the first Dr.Mr.BIG SHOT did everything all wrong.if you can believe i had an ammended path report in Sept.after my last surgery and that is the right one....it only took 14 months to get this thing straight.
I did fine with all this but now im a little worried about the swelling.....is it normal?should i call the dr? could this be lymphedema?Did anyone have this?
I am just wondering what my path report has to do with moving on after the rads?????It would be nice to get some kind of info on what people are doing after tx.How they are feeling????
Im just tryin to get some answers here.
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Hi little GrannyD! Just having Breast Cancer is confusing enough, without keeping track of all those reports, stages, grades, etc. But I DID remember mine was 0/3 lymph nodes! But of course everyone recommended the extra added precautions of Tamoxifen or Femara....I even asked for Tamoxifen over Femara, due to the side-effects I had been reading about.
So I took Tamoxifen for 14 months...And I did GREAT!!! Not too many leg cramps, nor "warm waves".....Just issues with a good nights sleep. Only thing is, after 12 of those months I went deaf. For the last 2 months on Tamoxifen, I went nuts trying to "open" my ears, especially my left one. Those nasal rinses, Claritin, nose spray, a humidifier....And nothing helped....My PC said it could be allergies....It wasn't...
She sent me to an ENT...HE said, I have 100% hearing loss in my left ear, but only 50% loss in my right... "Permanent Nerve Damage"...... I went home, & started researching all I could, about hearing loss..."Could it have something to do with the Tamoxifen?" my Husband asks.... I said, no, that's not one of the SE's. THEN I found 5 articles about "Deafness from Tamoxifen"...
I reported this to the FDA, & I'm waiting to hear back...Nothing they can do for me, except maybe have the manufacturer add this to their list of "possible" side effects. And oh, I even wrote Astra Zeneca...they wrote back, Nope, sorry, we don't make this.
So I'm wearing hearing aids now...And as neat as they are, they don't take the place of "normal hearing"....
No-one would believe me...Not my PC, my Radiologist, who suggested Tamoxifen after Rads, nor 2 Oncologists, and not even the ENT.
So GrannyD, I understand WHY you are so hesitant to go any further with "treatments"....If I would have known what would happen, I wouldn't have had more either....
But I didn't have any bad nodes....Did you say you had one? Do they do "tumor markers" on you...??? Those blood tests every 3-6 months? That would help the Oncologists know if anything is going on inside...
Also, I had a terrible "reaction" to the Tamoxifen, but maybe Femara, or Arimidex would't be as bad..... We just don't know....But I would never advise you that you had to take one!
So now I bought some Cruciferous Complete....Supposed to be good stuff for women who won't do the extra meds! And maybe with all the other vitamins I take, I'll live to be 100, and fall off a 3 story building somewhere!
Just make some sort of decision, then stick with it....even if it's only for a week. You can always change your mind...and go for extra treatment...... Me? Nah....gonna go cold turkey! If I get BC again, well I'll think about that if/when the time comes!
So go massage that sore breast of yours, use ice-packs, & whip that puppy into shape! Yes, it could be lymphodema...so you have to be aware of that... SherryC !!! Good advice!
Hugs gals! xoxoxoxoxo
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Thanks Chevy for sharing your story about the tamox.these are the things we all need to know.yea in the end we make the final decision but we do need the facts.Sorry about the hearing.damn.
the swollen boob went down.im using Emu oil mixed with calendula gel.doing a gentle massage.i think its working.I also think i might have slept part of the night on that arm...who knows...all i know is I MUST ALWAYS BE AWARE...
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Hey gals....Is it true that any one of us can get Lymphodema long after our surgery? I read this somewhere....but don't know if it's true.
Every time I get a little pain in my breast, I think "Oh no!".....but I'm sure it's just still trying to get back to normal, after going through that traumatic experience it found itself in.
I wish we could hear from gals that are doing great after Radiation, without taking any of the prescribed preventive meds..... And how/what they did ....... I wish there were a way to prove that by taking those meds, like Tamoxifen, Femara, Arimidex, etc, that we would NOT get cancer again.....
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Yes Chevy--i did read you can get lymphodema long after tx.is over.you always have to watch that arm and boob.i also just read about cuts and bruises to that arm.i never knew that too.I guess you just have to watch period.no BP or blood work.damn what good is that arm now???i am lleft handed and im scared to do too much.AND what is too much?????
This thread is supposed to be about how the sistas are doin after the rads.WHERE ARE THEY???I am sure some of them are doin great.I sure hope so.
I WISH THEY HAD A VACINE TO PREVENT CANCER.
Please sistas share your good info with us.WE ARE IN THIS TOGETHER
hugggggggs and God bless K
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Hi GrannyDukes! I am doing fine after rads. I had no skin problems and my suntanned breast is fading back to pale white again.
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Barbara how long did it take for your skin to fad back. I am two months out and still have a nice suntanned square on my breast. It has faded some but still very distinct.
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I just noticed! Hi Jo1955! We all used to be together on the Tamoxifen thread! Nice to meet you here!
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I finished rads July 9 and I think I was back to pink by December.
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Thanks Barbara I knew I was being impatient. Can't make my scars go away but would like my skin to look normal again.
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Just seeing this post. Sorry ladies. I finished Rads. July 2, 2010. I burned horribly. It took three weeks for my new skin to come back and another two weeks for the worst area to heal. I used Remedy lotion and Aquaphor for three weeks afterwards and then had an allergic reaction to the Aquaphor they thought. So I didn't put anything on it after that other than suntan lotion. Turns out my allergy is to the lanolin in the lotion. I had a MX so my recovery is a little different. The Rad's Onco. says my skin looks great it feels fine too. I still can see my tan line and I do have some scar tissue. I did develop lymphedema and also have it in my trunk. I too fight the tightness in the arm muscles. When I get in bed and do my lymph massages, I also do some stretching. I like to put both hands on the back on my head and stretch that way. It really pulls at those muscles.
I wish I could say I was back to my norm but I also had major complications from chemo. I am just all to thankful to still be here. You will all be fine by summertime.
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HI Chevyboy- I am still on the Tamoxifen thread and have a great time there with the other Tamoxibabes.
Hi Sherry, Valgirl & BarbaraA - Nice to see you here.
I finished rads on Dec 3 and am doing great. Skin is completely healed and the boob is fine. I am smaller than the other side but not too bad. No signs of sunburn or even pink.
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