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After Radiation

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Comments

  • jo1955
    jo1955 Member Posts: 7,545

    GmaFoley - That is a new one on me. When I finished rads, I went about my regular routine without a thought to how much I could and could not lift.  But then again, I had such a friggin moron for a RO that there was not even a mention of lymphedema or the possibility of lung damage or nerve damage in the breast that I ended up with.  I escaped the LE issue but had to deal with all the damage.

    I'm sure someone will come along and give you an answer. 

  • chabba
    chabba Member Posts: 3,600

    It was my BS that warned me about LE.  He said once our lymph nodes have been disturbed we have to be concerned about LE the rest of our lives. 

  • duckyb1
    duckyb1 Member Posts: 9,646

    Chabba................I found my own LE...........I had suspicions only a few weeks after surgery, but they thought it was just edema from the operation..............when I got to Rads, after about my second week of treatment, I mentioned it to my RO (fabulous woman), and she measured my arm immediately.....................it was larger by a small amount, but she said "get to an LE specialist right away".........................I did, I was diagnosed, and the rest is history.

    I had 8 nodes removed because the SNB dye did not take, so for safety my BS removed 8......all were negative for cancer.(lucked out there)

    Having nodes removed does not mean you WILL get LE..........you are just more prone to it......Rads can also cause LE which many don't know.

    20-30% of woman with node removal will get LE.............of course I was one of the lucky ones..................My LE specialist had 30 nodes removed after a mastectomy.......she did not get LE..............my son in laws mother had 20 removed and also a mastectomy...........she did not get LE................so you can see its the luck of the draw............

    I was only told right after surgery not to lift more then 5lbs (by my BS), but that had nothing to do with LE..................Once I got LE, the rules changed...........lifting was not an issue.....................needle sticks and cuts was.................blood draws on the LE side was.....................and wear a glove while gardening (which I don't do)

    I was measured for a compresson sleeve (custom made), which I will wear everyday, and yes it is for life.................ugh...................hope your ok, and LE is not fun, but nothing with cancer is.................hugs.

  • starella
    starella Member Posts: 101

    I will be attending a luncheon for Dr. Susan Love (breast specialist) on thurs.  They will have a short Q&A period, does anyone have any questions they would like me to ask?  I so excited!   ---- Another question, i am 2 months out of radiation therapy, and my radiated breast feels tingly..i cant think of another word to use..but if i press the area it stops (?) there is still alot of itchiness.

  • FireKracker
    FireKracker Member Posts: 5,858

    Starella-I do have questions....how long does the numbness last under the arm after the nodes were removed and after the rads?my onco said it could always be knumb and always pain that comes and goes.i wonder if that is really so.i sure hope not.last surgery was sept 2010 and finished rads in feb.2011.

    My BS also said dont lift anything over 5 lbs. forever.I do have edema and i watch it carefully.forever...not happy about that one either.

    also if you can ask the wonderful dr.what really are the S/E of the rads that are kept under lock and key????and why dont they tell us before we start tx?

    gosh i could go on and on...hope you can get some answers.

    Hi Ducky---comin up your way today....

  • painterly
    painterly Member Posts: 266

    Good question g.dukes:

    also if you can ask the wonderful dr.what really are the S/E of the rads that are kept under lock and key????and why dont they tell us before we start tx?

    I got a frozen shoulder from radiation and the RO denied that it was caused by radiation. I had physio treatment for it. My physio gal said she gets many women whom she treats for frozen shoulder because of the radiation, and if the RO would give the women a few simple exercises to do they would be less likely to develop the frozen shoulder. So why not give us these exercises to do? Is this a good enough question Starella to ask at your luncheon time permitting of courseand without hogging the microphone?Smile 

  • chabba
    chabba Member Posts: 3,600

    I asked my BS about bowling, my primary form of exercise.  He asked about ball weight.   Said my 12 lb would be no problem as long as I use two hands to pick it up.  I'm over a year beyond surgery but I believe I will always be vigilant.

  • duckyb1
    duckyb1 Member Posts: 9,646

    Hey Granny..........................welcome to my neck of the woods.................just had a ridiculous storm here, but it stopped now..................wanted to go to my shore house this weekend, but no one was going down.............No fun going alone...............oh well maybe next weekend............

    In the meantime you enjoy yourself...................hugs.

  • Sherryc
    Sherryc Member Posts: 4,503

    painterly when I went for my three month followup with the RO I was having some really stiff pec muscles.  He did give me exercises to keep my shoulder and pecs moving.  He said that the pec muscles get alot of damage during rads and it takes 2-3 years for them to get back to normal. I am very active so it was very noticible to me.

    I went to my pain dr today for him to follow up on my breast pain which is much better.  With the Amitriptiline, the compound cream he gave me and also the celebrex for my hip I notice is helping the breakthrough pain in my breast.  So as long as I take my drugs I am good.  However I was in a bad car accident 16 years ago and broke my neck.  I have always had nerve damage in three of my fingers on my left hand.  In the last month I have noticed that my other two fingers have lost sensation.  This last week as I was doing yoga my hand starting tingling and feeling really weird.  I have never had this happen before.  Well I suspect it was from rads and the pain dr comfirmed that he thinks the nerve was running through my rads field and damaged it some more.  He does not think I will have to have surgery because so far it is not painful at all and I have not lost strength in my hand.  But he wants to have an MRI so he can see what is going on with the nerves. If it gets worse I'll have to go back to a neurosurgeon again.  It was stable for 15 years and I never thought I would have to deal with any of this again. I really pray that this is it and does not get worse I can live with it the way it is.  I am really pissed that the rads has caused more damage.   The good news is I am on a three month rotation will all my Dr's now so I can start having a break in between.  I know don't have anything until Sept with my Ps and then Oct with my MO and pain Dr.  

  • gmafoley
    gmafoley Member Posts: 5,978

    Well I'm not sure about my "not lifting over 10 lbs issue" At the beginning of rads they told me not to lift over 10 lbs with the treated side, to the point of giving me a doc note for work... I forgot to ask the RO yesterday but asked the PA today and he said "when you can actually lift 10 lbs you will be fine"  what the heck did that mean??? I just am trying hard not to have issues with LE.. wish someone could give me a straight answer.... Anyway ladies - I'M DONE!!!

  • jo1955
    jo1955 Member Posts: 7,545

    GmaFoley - Yea!  Doing the happy dance with you.

                               

  • Sherryc
    Sherryc Member Posts: 4,503

    Gmafoley so happy your finished.  Woohoo!!!!!!!!!!!!!!!!!!! I was never told anything about not lifting but then I exercised all the way through rads doing yoga and my doctor knew it and encouraged it. 

  • juliet62
    juliet62 Member Posts: 3,246

    same here ,. never put on any lifting restrictions, they know i'm working as a floor nurse

  • jo1955
    jo1955 Member Posts: 7,545

    Lifting restrictions???  I know my RO did not tell me anything but this is getting ridiculous - what a moron he was - Oh well!  He went in the bonfire a long time ago.

  • gmafoley
    gmafoley Member Posts: 5,978

    Jo1955 - you can happy dancing for me - i don't have the strength unfortunately - last night I rolled over in bed and had very very bad pain in my breast - like it was ripping apart (sorry for that graphic) I went in to see doc again before my last treatment... gave me some heavy duty pain meds to fill at the pharmacy..but when I went to lay down for my treatment - the pain I felt last night came back - I cried all the way through treatment and the tech said nothing just got her done..... I won't miss him at all...

    Anyway, the doc said that pain and the burn would get worse before it got better... I don't know how much worse I can take!!! --- Have any of you had this type of pain bad enough to pass out or throw up??? I always thought of myself as one with high pain tolerance - but this is worse than childbirth !

  • duckyb1
    duckyb1 Member Posts: 9,646

    Gma..............never had that kind of pain............a few twinges now and then, but that is it..........that is horrible, and so much for sympathy from the asshole who was treating you..................The only thing I found out after was I got very tired and drained........stayed somewhat red, and peeled a little, but that was it, and I had 36 treatments, and 8 of them were boosts...................I just hope you feel better................hugs.

  • Sherryc
    Sherryc Member Posts: 4,503

    gmafoley I had terrible pain at the very end.  My areola and nipple was completly raw.  The RO had to give me Loritab so i could make it through the last 4 boost.  I have never been in that kind of pain before.  I think what made it worse was that it did not let up and go away, it was constant.  Anyway once I finished my skin healed very quickly.  I slept alot right after that but I have read that when you sleep alot that is your body's way of healing itself. I finished the end of January and I am still using creams per my RO.  I used my radiation creams for two weeks post radiation and then switched to a vitamin E cream.  My areola is a puffy scar but otherwise my skin looks pretty good.

  • gmafoley
    gmafoley Member Posts: 5,978

    Thanks Ducky for letting me hear a good story...I am so happy you aren't going through what i am right now...I wouldn't wish this on my worst enemy...

    Sherry -  the surgeon ended up taking my nipple so I'm thankful I think for not having that issue too..my RO gave me a prescription for X-clair and my church, knowing I couldn't afford it, wrote a check to the pharmacy for it... Its the only stuff that seems to give me any relief without being allergic to it... (radiaderm and silvadene i'm allergic to).. He also gave my some oxycodone for the pain.. I was waiting for my DH to get home from his business trip before I took one though ... sounds like sleep will do me good.  I will let you know how things progress.. sure is a roller coaster ride, isn't it?

  • duckyb1
    duckyb1 Member Posts: 9,646

    Gma.................I guess I should not make it sound like I haven't had my share of problems..................yesterday I had the worst heartburn, and could not get rid of it........4 Tums right in a row.............finally 2 tbsp. of Gaviscon, and it went away.............had the sore throat........... the funky metallic taste in my mouth (no chemo either) and sometimes nausea...........but nothing I could not handle............however, I don't like any of it...............I think the "sudden onset of tiredness" was what shocked me............I would go (and still do) from "great" to "what the hell is wrong with me, I have to sit down"............so I have had my minor problems..........................so no one is going to tell me there are not more SE's then itchy, burning, and redness..............we can't be wrong....some RO's just don't want to admit all of what happens for fear many will opt out of Rads.............mine believed everything I told her..........

    I do have LE that I'm dealing with that right now, but can live with it.......actually I have no choice................Haven't begun my AI yet.......................that is my hangup right now............still need to take it, but can't make myself do it...............one day I will................only out of Rads 3 1/2 weeks...............................hope your days are better.............

  • FireKracker
    FireKracker Member Posts: 5,858

    just popping in for a few min....guess we couldnt get any answers...looks like we are gonna have to figure this thing out amongst ourselves....hey we are doin a pretty good job soo far.it seems that every damn thing that happened to any of us another sista came up with...damn those white coats!!!!!!!!! guess they are gonna still keep it under lock and key..ill be checkin back again.still dont know when im goin home and still dont care...

    miss you gals a lot...stayin mostly indoors.everytime i go out to smoke it seems like there are always some kind of bug flyin around...scared to death of getting LE...

    hugggggggggggggggs K 

  • jo1955
    jo1955 Member Posts: 7,545

    Granny - Don't let the bugs control you - go outside and enjoy life.  I know we are all scared of LE but that is not going to stop me from enjoying the sunshine.  Have fun and enjoy the rest of your weekend. 

  • edwards750
    edwards750 Member Posts: 1,568

    grannydukes...I am done with RADS too as of Wednesday...Yea! I have experienced pain in my breast during the RADS treatments and now post RADS but nothing like you describe. I was told my the techs that the burning and pain could continue on for several weeks. I dont take pain meds but might now every now and then. Am using the silver cream and aloe vera and the cream really helps. Breast is looking better every day. Such a relief to be done. Diane

  • FireKracker
    FireKracker Member Posts: 5,858
    hey JO JO---you know i hate the summer...i dont mind stayin in playin with my greatGS.17 mos old and he is a rippppp.you can all have the sun too.even when i complain of the snow i would rather have the winter anyday.
  • jo1955
    jo1955 Member Posts: 7,545

    Granny - And I would take a hot sunny day over the ice and snow.  I hate to be cold!!!

  • FireKracker
    FireKracker Member Posts: 5,858

    i dont like the snow or ice BUT i love a nice cold day...it makes you move.the summer makes me slow,lazy,hot and cranky...i think ill stay in pa...the summers are short and the house is cool without AC...

    ill be back soon....huggggggggggggs K 

  • Sherryc
    Sherryc Member Posts: 4,503

    gmafoley-I used X-clair and it was really good.  I got very lucky with my prescription coverage because I understand it is very pricey.  At the end when I was so raw it hurt for water to even touch my raw spots.  My RO gave me Regenecare which is prescription lidocaine cream.  It would burn for a second and then go numb.  Then I could take a bath or put my creams on.  Without it I could not do anything.

    Diane woohoo for finishing rads!!!!!!!!!!!!!  Always glad to have a newbie here caus that means you are done with rads.

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781

    Debbie- check your cholesterol...combined with tamoxifen causing bloot clots (are you on tammi>), you should have it checked and regulated. I had a heart attack 3 months after starting it (hereditary factors and ammi were not a good combo apparently) so....check it out.

    I also told my eye doc afer rads and when i went on tamoxifen he was happy I hd told him as it can create changes. Guess I will be the happy one next meetin when I tell him I am no longer on it!

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781

    oh yea....wire-bra wearers...i am just starting to get comfortable in them again post rads...and mine ended December 16th....so put it in the bottom of your drawer and if you don't have lymphodema,enjoy wearing it occassionally in the fall...stop fretting about it. Everyone who says it hurts less later and you can wear it is right...it took my six months and I do NOT wear it every day...and what looked like lymphodema is caused by the tightnedss in my chest from the scar tissue so now I am going for physio and have learned a bunch of exercizes...seems to be helping!

  • FireKracker
    FireKracker Member Posts: 5,858
    Its not only the wires that hurt its the seams in the bras too.Im tired of myb ras being uncomfortable....the sports bras are wonderful....and if i have to go out ill wear my genie bras....no underwires for me anymore...thats just me!!!!!!.
  • Sherryc
    Sherryc Member Posts: 4,503

    I guess I have been lucky that I have been able to wear my bras.  my incision was in the 10 oclock position on my left breast so my bra does not touch it all.  although u can see it in my bathing suit which i do not like 

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