After Radiation

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited June 2011

    it blows my mind when i hear these stories about the ROs.gosh they really make you think its a walk  in the park.yeah it is for a handful of sistas but most of us have lots of problems after RADS.....

    Sherry-what are they doin for the edema??????if you told us before i dont remember.lately i dont remember shit.im prayin for you sista.

    and you Jo jo----another pill for life....WTF...damn...those drug companies are havin a good time with us....this sure makes me mad.

    prayers goin up for all the sistas as usual.hugggggggs and God bless.K

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    granny the PS is the first one to really say anything about the edema.  I am going to call his nurse tomorrow and ask about it and see about going to a PT.  Now that I know I  will not have surgery until March I think in August DH and I might just go see our kids in Seattle.  I could use a vaca.

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  • changes
    changes Member Posts: 622
    edited June 2011

    Hi all,

    For those of you having the stabbing pains post-radiation, they DO eventually get better. I am 10 months out from radiation and used to have them all the time. Now they only happen once in a blue moon (but no pattern that I've noticed). In about the past month or so I've been able to wear my regular bras without any discomfort. It's just a slow healing process.

    Yea, it would sure be nice if radiation oncologists warned us about all the bad things that can happen from radiation.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited June 2011

    Sherry - Yes, it is our little green pill.  For now, I am staying on 50mg. 

    changes - At least there is hope with the stabbing pains.  I have had really intense pains for the past 5 months and at this point I don't think I am ready to "ride out this storm".  My pains were so bad it was effecting my quality of life.  Maybe sometime down the road I may try going off the meds and see what happens.  You do give me hope that this will eventually go away.  Thanks so much.

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited June 2011

    I tell myself that the pain (or ache as it mostly is these days) is my body healing....here is a big hole to fill in so I am also massaging the area as much as possible to help . Would that it be that I had someone else to do the massaging ! ah well...the job is getting done and I think it is helping! Sherry, glad I gave you a little laugh!! I was also serious though!

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  • chabba
    chabba Member Posts: 5,065
    edited June 2011

    It was my BS that told me about lymphedema.

    It was the radiation oncologist that went over my path report with me.  He was not only very thorough and easy to understand but he drew diagrams and made copious notes of what he was telling me which I have often referred to.  He also warned me of most of the side effects of radiation that I experienced.

    As for my med onc, I'm getting a different one but haven's seen him yet.  Nuff said.

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  • bdavis
    bdavis Member Posts: 6,201
    edited June 2011

    Sherry... I would at least go to NOLA for a consult. I too was told I didn't have enough fat and I have met women who were THIN and the doctors in NOLA still found enough fat. My consult there led to them suggesting a stacked DIEP (abdomen and hips) and that is what I am doing... you are in TX, not that far from NOLA... I am travelling down from NJ in July... I would have the consult before gaining the weight... they would never suggest you gain weight. I am sorry about the implant problem... I know how it feels to get your mind set on something and then disappointed... but I think you'd be very impressed with the docs in New Orleans.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited June 2011
    Chabba - The first and only time I have heard about lymphedema was on this website.  No one of my doctors ever mentioned it.  My rad onc is such a moron and so glad I haven't seen him since I finished rads.  He did not tell me there were any side effects from rads.  When I called his office about the lung damage.   When I told him a lung specialist had said it was from rads he did not have much to say for himself.  Now that I have the nerve damage from rads - I am not going to waste my time and call him to report it.  He would most likely deny that as well.  Enough said about the rad onc.  I get so pissed off just thinking about him.  Sorry for the rant but it does feel good to get it out.
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  • chabba
    chabba Member Posts: 5,065
    edited June 2011

    I understand, if I were a ranter I would be talking about my MO.  Instead I imagine him in the head pin position when I bowl (along with anyone else that really upsets me).  The more upset the better I bowl. 

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    Thanks Bdabvis could you PM the contact information for NOLA.  It is an easy drive from here.  Takes a day but very doable.

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  • SusanHG
    SusanHG Member Posts: 655
    edited June 2011

    Sherry,

    so sorry to hear about your PS visit. It must be so frustrating to get through treatment and then get blasted with all this information that youdidn't know.  I know RO's seem to always be hiding things from patients.  Could it be they don't want to scare us off from going through with it?  I don' t know, but wish they would give us the benefit of the doubt and keep us informed.  Good luck making your decisions.

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  • lrr4993
    lrr4993 Member Posts: 937
    edited June 2011

    I just posted this in a separate thread but thought I may get a better response here:





    I finished rads in February. I have since had some soreness (improving but still there), dry skin on the nipple, and general warmth in the area. I had a routine follow up with my BS last week who said these are normal "radiation changes" that can last up to 18 months. I suspected as much and was fine with that.



    Well, last night I suddenly developed an area of redness. It is a distinct area with a border that is slightly darker red than the inside. It sits right over, and above and below my incision scar. It looks a lot like the shape of my boost treatments.



    I have a call into the doc but thought I would ask here to see if anyone else has experienced this. I suspect it is probably a rads thing, but IBC seems to have these same symptoms, which scares me.

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited June 2011

    HI LADIES.........................ITS THE "DUCK" HERE.............................I AM OFFICIALLY A MEMBER OF THE "AFTER RADIATION" THREAD.............................DONE, DONE, DONE....................BELLS WERE RINGING, PEOPLE CRYING, PEOPLE CLAPPING,.............................ALL MY KIDS THERE WITH ME, TAKING PICTURES AND VIDEOING THE ENTIRE THING..........................EVEN THE WAITING PATIENTS WERE CLAPPING.................GOD IS GOOD................

    AND YOU LADIES WERE MY SAFETY NET, AND MY SANITY ON THE BAD DAYS ..........THANK YOU FOR BEING THERE FOR ME.................HUGS TO YOU ALL.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    HUGS Ducky congrats so glad you are finished

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited June 2011
    Thanks Sherry...................Smile
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  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    Granny I called the PS and asked about the edema.  And even though I am still swollen they said that because I have kept range of motion really well because of yoga that I did not need to go to PT.  They just think I am healing a little slow and that is why he won't do the surgery now and I have to go back in September to see how things are progressing.  If he feels better about my healing and if I can gain at least 10 lbs he may go ahead and do the surgery, if not I'll have to wait some more.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited June 2011

    ducky - Doing the happy dance sister.  

                                       

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited June 2011

    Ducky!  CONGRATULATIONS little duck!  I feel so sorry for you gals that had the "regular" radiation, and I couldn't relate because I just had the MammoSite Device rads.   You gals are so brave! 

    Hi to the rest of my friends!  Our Daughter is still here from Orlando, with our 2 grown Grand-sons, & they are running us ragged!   They don't know what "relax" means.....  Is it because it has something to do with me being "older?"   They want to go see all the places they "remember" from when they were little boys & lived here!   But actually it's been fun for us too, ha!  Wink 

    Tomorrow we are having a big dinner for the rest of the family....Aunts, Uncles, cousins, & people we don't ever see all the time... So  I can't get too worn out yet!   Whew, I'm tired......

    Talk to you later! xoxoxoxoxo

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  • walley
    walley Member Posts: 231
    edited June 2011

    Ducky, Hugs and congrats. I know it feels great to be done.Celebrate!!!!!!I

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited June 2011

    whhheeeh ducky!!!!! Doing the happy dance!

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited June 2011

    Congrats Ducky....welcome aboard

    before ducky posted a new sista lisa posted about a problem with her breast.as usual i dont remember exactly what the problem was but it didnt sound right.I finished rads in feb.and most of my tan is gone but the nipple looks ugly.Please call your BS and have that checked out.

    Sherry---I too have great range of motion from doin stretches and exercises daily but i still went to PT>i do have mild edema but you have to get the fluid out.someone should have given you manual massages to do.And you should be wearing a compression bra.I am a little over the top as you sistas know but mine is almost gone.

    CHEVY------keep running around.....thats what life is all about.

    hugggggs to all my sistas.xoxoxoxoK

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  • jo1955
    jo1955 Member Posts: 8,543
    edited June 2011
    granny - Are you stil wearing the harness or have you graduated to regular bras?  Laughing
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  • FireKracker
    FireKracker Member Posts: 8,046
    edited June 2011
    im wearing the harness and i just got my first sports bra.my reg.size.34DD.im almost normal and i was released from the PT but im doin the manual therapy all the time.i still have mild edema but its almost gone.next step should be a reg.bra.
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  • jo1955
    jo1955 Member Posts: 8,543
    edited June 2011
    granny - You are making great strides in this fight with the edema.  It has been a stressful time but you are a strong person and will get through this.  You are not going to let the beast defeat you.  Heck, if I were the beast I would be scared - you are from Brooklyn.  Tongue out
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  • FireKracker
    FireKracker Member Posts: 8,046
    edited June 2011

    you got that right JO JO----i fought like a dog with this edema and i feel like im winning.thanks to all my sistas who listened to me bitch and complain about this huge kantalope of a breast.this too will always have to be watched but yes ill fight this beast just like the Brooklyn Gal was taught.

    Please sistas dont overlook swelling after the rads.if it doesnt feel normal its not.

    huggggggggs K

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  • ToriGirl
    ToriGirl Member Posts: 1,188
    edited June 2011

    I ditto what Grannydukes says...she knows what she is talking about!  :)  

    Been gone on a small vacation with the hubby after he got home from deployment, but I'm back and checking up on all you lovely ladies!

    So wonderful to see that so many others are done with "active" treatment and doing well.

    I know that we do have some things going on, but it's nice to just get to a point where we can start to talk about other things besides treatment...

    Prayers for all of you...getting stronger and stronger each day....

    Hugs,

    Tori 

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited June 2011

    ((((((((TORIGIRL))))))))) missed you.glad you had a few days away.

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  • sagina
    sagina Member Posts: 1,219
    edited June 2011

    Sherry and Betsy ~ there is a flip side to the tummy fat ~ how bout a PS looking at me and saying "you really are too large for the tummy fat implants, and radiation is going to ruin the skin, and a foob won't work since there is a 50% chance the skin will fail in radiation and split open...." I left that PS office thinking he'll never touch me!  That solidified my choice for lumpectomy.  My wonderful BS made me go the PS for a consult before making my decision. 

    Thank you all for your advice on the breast pain.  I'm getting the horrendous pain maybe twice a day, but it stops me in my tracks.  I can also feel a tightness from the incision (top of breast) up to the super clav - bet the muscles are just angry!

    I see the RO July 14, the BS to get the medi port out July 20 and the MO July 21 to schedule the first 'scans".....Never a dull moment!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited June 2011
    Tori - Sure missed you - glad you had a nice vacation with hubby.   (((HUGS)))
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  • SusanHG
    SusanHG Member Posts: 655
    edited June 2011

    Ducky-so happy for you!!! Yaaay!

    Gina- I've been out in public and forced to scream when I get those pains, but I am happy to say that I haven't had one in a while.  Just general tightness and soreness now, thank goodness. 2 1/2 weeks post-rads...

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