Chronic radiation damage

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ro-berta
ro-berta Member Posts: 134
edited June 2014 in Radiation Therapy - Before, During, and After

I have debated over writting a post for over 2 weeks now. My hesitation was not wanting to influence anyone in making a decission pertaining to needing radiation. First off I want to state that for my situation I have always had med. issues such as I am alergic to all anti-biotics, ibuprofins some blood pressure meds ect. My system just seems to be very sensitive (for lack of better words). This might be the most I,ve ever written but I am having a hard time right now,more that when I had my cancer dx. I just saw my rad. onc again for the 5th time in 4 mths and was wondering what was up as he was ready to end our time together a week after I finished my rads. I had only seen him once during rads as he was on holidays, and i was not given another onc. to see. Anyway last visit I was told by him that i had radiation damage ( and i repeat this is rare!) I have been told this by my PCp and surgeon also. My system was just to sensitive to the radiation. I guess I am writting as I feel isolated and alone there is not much info out there about this and I don,y want to worry my family anymore than they have been so I feel like I can,t talk to them wondered if there was anyone who had to deal with this issue. I am being put on long term disability from work as it effects my right side of torso and arm. And again I must stress that this is a s**t happens situation that is part of my "detour" with b.c. I also must confess that I did almost cry over this as it scaed me more than the cancer dx. Thanx for the "ear" and letting me get it out.

  roberta 

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  • Starak
    Starak Member Posts: 536
    edited December 2012

    I wish I had words of wisdom for you but sadly I do not. I have similar multiple sensitivites with other medical conditions. Does re-confirm my decision for MX to avoid radiation. I have thanked my lucky stars many times for that decision.

    I am so sorry I have nothing to offer. My thoughts and prayers are with you for the best ultimate outcome.

    Barbara

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited December 2012

    Please go to the After Rads and Radiation recovery.There is a lot of info there that just might help you.Start at the begining of the post when everyone finished together.

    Sending healing prayers to you

    Grannydukes

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited December 2012

    Ro-berta, I am so sorry to hear about your issues.  We all had radiation damage, I am a little perplexed though about whether or not this is long term for you - and how would they know after only 4 months?  I guess I don't undertand what type of "damage" you are talking about.  The tissue damage and swelling can last for 6 months- 1year, but does go away; as do most skin issues.  Lung/heart issues, and fibrosis, don't show up, usually, for a year or so after treatment ... is this the damage you are speaking about, did yours show up early?  

    It took well over 4 months until I could move my arm (from both surgery and radiation), and I had some truncal edema that made it hard to breath (mainly only noticable because I am a runner) - but the tissue and skin damage is now mostly gone.  I saw a physical therapist, have been doing exercises, and just let time do its thing, and I am doing much better now (6 months out).  

    Best of luck to you. 

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  • ro-berta
    ro-berta Member Posts: 134
    edited December 2012

    Thank you all for your replies makes me feel better. I was very active prior and had a physically demanding job, I guess I just have a hard time with not being able to go back to what I was doing before hand. The fatigue now due to heart issues and constant pain which has increased are dragging my butt. I get into a O.K " I,ve had enough smarten up " mode but that,s not helping either. It,s frustrating as you all can understand. I have requested physio so I am going to start that. I still have rashing issues that clear up then come back plus other issues that were not present before hand. Any was thank you all again for your replies . I feel like a total complainer which honestly I am not. I was a person who avoided any Dr,s and always had a "suck it up" atitude. I am just experiencing "down" mood from these visits which I keep getting called in for hahaha. 

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited December 2012

    ro-berta -- I completely understand.  I expected be "done" and recovered as soon as radiation was over -- I did give myself about a month, but by then I really thought everything would be the same as before.  It seriously took 4 months before the rash (mine came and went too), the swelling, the pain, went away.  I am keeping you in my thoughts, and I am hoping you will be better by 6 months, as I was.  I hardly think about it anymore -- although the tattoos are a constant reminder ;-).  Good luck, give yourself some time .... 

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  • dianemoe
    dianemoe Member Posts: 74
    edited December 2012

      

       Ro-berta….what type of trouble are you experiencing? I  finished treatment May of 2011 did fine for 6 months. About Jan 2012 I felt like my breast was drawing up. After a while I had a left breast that was 36ddd and a right about a C. Very very firm very very painful. I called my RO who said he only followed up for a month. Which I did have that visit but at the time only had burns that looked like they were healing. Next I went back to surgeon to see if he thought what I looked like was normal. He promptly call my RO and said you need to see this patient. RO called it chemo radiation induced fibrosis. I took gabapentin for nerve pain also trental and vitamin E to increase blood supply. No change, I developed some pretty severe sores. I have been to PT cause we are also sure a lot of this is lymphatic fluid. The massages help move the fluid but is difficult due to the sores. I went to a plastic surgeon because I feel as though a mastectomy is probably in my future. The PS said he thought he could help without surgery. He suggested a hyperbaric oxygen chamber. I did that five days a week for 8 weeks. This did somewhat help with sores but seemed to make lymphedema worse so I quit. I have searched this site over for anything similar and have not found anything until this post. Not sure since the info is limited. I have narrowed it down to Radiation induced morphea.

    http://www.hindawi.com/crim/rheumatology/2011/951948/

     I have been referred to Emory in Atlanta. The radiation section with a dermatologist. Maybe it will take a rheumatologist I don't know. Sorry to go on and on but just no other place to post my rant. I have posted before on the radiation site but was told I may want to see a PT which of course I had done. This goes far beyond PT. I just so hope Emory has some ideas and or answers. I have printed the website and after listening to the Dr will show the site and see what they think.

     Even though I post hardly I read daily. I respect the women on these pages. I have gathered a lot of information whether it be on chemo or radiation. Just keep searching for information about this breast issue and have nothing. Please advise if anyone has heard of it experienced it. I would love some relief. Thanks for listening……..Diane

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  • Frogger52
    Frogger52 Member Posts: 2
    edited January 2013

    I too thought after the radiation, everything would be fine. I had a double mastectomy and then radiation. I am a year out of radiation, I.ve been to the heart dr. 4 times, while. I have a blockage it's not enough to be causing the chest pain and shortness of breath. after my second echo the drs saw some changes, had some pulmonary testing which is showing restriction. My diagnosis is tentatively pulmonary hypertension caused by you guessed it radiation. My pulse oxygen is around 90 so I'm on inhalers and a nubulizer. The best I can do is 94. I have been referred to the university of Washington to their pulmonary clinic.

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  • ro-berta
    ro-berta Member Posts: 134
    edited January 2013

    Hi Frogger, I,m sorry to hear about the problems you have been having. You aren,t alone. I have had a few women P.M me about their issues since I have posted. I think for me the hardest part was thinking that now that I finished treatment I would be going back to my "normal" routine. My situation in that reguard has certainly changed, and had to get used to the adjustments or transition I guess would be a better word hahaha. I hope things ease up for you feel free to p.m me. For me I think "least the cancer is gone" . Please take care, hugs

    roberta

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