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Why did you refuse Radiation?

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For those of you that refused Radiation, can you tell me why?  I am in the grey area and the Radiation doctor is recommending it, but my Oncologist assumed I wouldn't need it throughout my Chemo treatments.  I'm confused and just want to hear from more of you how you came to your decision of why you might refuse Radiation rather than go through with it.

Thanks....

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Comments

  • scoutmm56
    scoutmm56 Member Posts: 1
    edited October 2009
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    I had the same problem in reverse, the oncologist assumed that radiation would be needed, the radiologist was ok when i told him I really didn't want to do it...he commented that he had read some research lately that supported my wishes....so I didn't have the radiation...frankly i was too tired from the chemo and surgery...I just didn't have it in me..I also couldn't understand what they were radiating since they just removed my whole breast...plus I had every single side effect you could have from chemo, so I had to assume I would have the same problem with radiation side effects and possible permanent damage and I said...I think not...no regrets...radiation is to catch a  local recurrence and the option remains open to you to have radiation in the future...

  • carol1949
    carol1949 Member Posts: 48
    edited October 2009
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    I chose to use radiation.... reluctantly.  My oncologist is a personal friend whom I trusted and the radiologist told me it would cut my recurrence chance by 50%.  The reasons I was considering NOT to have it were obviously similar to yours.... just kind of tired of the whole process and the fact that radiation does have some negatives.

    The main reason for doing it for me, was I realize that our medical tests still are not 100%.  They can see tumors, but they can not see cancer cells!  So,it really is to target any of those little cells that may be floating around.  On the other hand, I would ask you to consider doing research into complimentary and/or alternative therapies that would allow you to have more peace of mind in your healing process.

    I have a long time friend who is an 11 year cancer survivor who did it holistically, and if you are interested in hearing some of the things she used, I would be happy to share.

    For me, now, I have been having Reiki therapy which has been profound.  

    Listen to your heart and if it doesn't feel right to you... don't do it.  There are so many other ways to combat cancer.  

  • RunswithScissors
    RunswithScissors Member Posts: 69
    edited October 2009
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    My disease was more advanced than yours and so even though  rads are the hardest of the treatments for me to accept, I figure I don't have much choice.

    But I did refuse certain aspects of it.  They suggested I do 3 separate areas - breast, underarm nodes and the nodes above my collarbone (supraclavicular). 

    I have pretty much decided to say no to doing the high nodes - unless they actually see something suspicious on the CT scan when we do the mapping.  I decided the risks outweigh the benefit - 

    I am getting chemo for systemic control. I have read that the chemo doesn't work as well in the sites that had surgery.  Since there was confirmed cancer there, the liklihood that cells remain is high, and  I'm agreeing to rads there.

    But the supraclavicular nodes had no surgery, and  no detectable mets.  So I've decided to rely on the chemo to take care of possible rogue cells in that area. ( I figure if the chemo isnt working in those nodes, it's not working anywhere else in my body, anyway.)  

    It's hard, I'm not a gambling type of personality, I hate have to rely on odds. 

  • activern
    activern Member Posts: 111
    edited October 2009
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    Previous radiation to my chest area scarred my lungs - *crossing fingers and praying* - so far no mets to lungs, but mets and scarring to liver.  Be careful with radiation.  So far all my docs agreed no more radiation.

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited November 2009
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    Bshoemaker - I just met with the Rad Onc today and she recommends rads because "I am young and will tolerate it well" and that even with surgery (bilat mx), chemo, another 8 months of herceptin and five yrs of Tamoxifen I still have a 15-20% chance of recurrence.   Both my BS and Onc could not say if rads were needed because I am in a 'grey' area with narrow surface (near the skin) margins.  My gut and heart say NO RADS! I had no node involvement and my deep (near chest wall) margins were clear.  My body is exhausted from surgery and chemo and I am not sure it would 'tolerate' another assault was well as it has the others.  Is this the right decision...who knows...can I live with this decision...YES! In the long run I think you just have to go with your gut...Best wishes in your decision!

  • tovahsmom
    tovahsmom Member Posts: 8
    edited November 2009
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    BShoemaker,

    I too am thinking about refusing radiation but unfortunately this is not based on any research I've done. In fact I would love to see some research!

    But to answer your question, I would like to either not do radiation or to postpone radiation because of work. I just started a new job and have been out a lot dealing with this cancer and I just don't want more inconvenience when it comes to my job. Maybe that's not a good enough reason, but this is my reason for refusing radiation.

    If I could postpone radiation until my summer vacation (I work in public schools), maybe I would consider doing that.

    If anyone here can point me to a book or some articles here on why not radiation, I would love to be armed with that knowledge. Like someone else mentioned here, its just a gut feeling as well that I don't want my body radiated, especially if its just for a very small chance that there would be some stray cells. My cancer was only Stage 0 as well. I am also thinking of refusing Tamoxifen. 

    Best wishes in your decision,

    Patricia 

  • BShoemaker
    BShoemaker Member Posts: 3
    edited November 2009
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    I recently spoke to my breast surgeon who also had breast cancer and I asked her what she did & how did she make her decision.  She had 6 lymph nodes involved and they wanted to do much more aggressive radiation on her.  She was going to only allow them to do the standard, not the aggressive.  Her concerns were she was very worried about Lymphodema and being unable to operate if she lost mobility in her arms/hands etc...  Her friend told her do you want to live or work...she replied both.  We laughed about it...but her friend told her obviously living was more important and she said she realized she would never forgive herself if she didn't do what her doctors advised & she had a recurrence so she agreed to move forward with their recommendations. It helped me to hear from my own breast surgeon who has already walked in my shoes...how she came to her decision.  I have one more meeting with my Oncologist to discuss further, but hoping that my gut will provide me the answer I need.  Thanks ladies!

  • Irishred
    Irishred Member Posts: 4
    edited November 2009
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    I guess I am the oddball here, I refused Chemo and chose radiation.  I had IDC, quite progressed, had a lumpectomy,  8 nodes removed first two werent good.  Then I made the choice to have radiation only (after a petscan)  I refuse to lay in bed and puke, if I have a few more good years.  I wasn't impressed with the oncologist who thought I should have chemo, I saw him twice and he repeated his words, "word for word" both times.  (God how i hate doctors).   So my rads are over,  other than being treated for "radiation pneumonia" now by my pcp, and starting to get some energy back, I feel pretty darn good.  Guess I am "way" more into quality than quantity, course I am 58 and that makes a difference too.

  • BShoemaker
    BShoemaker Member Posts: 3
    edited November 2009
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    Irishred - Thanks for your feedback.  Yesterday was my last chemo treatment (#6) and I will tell you that with all the anti-nausea medication they have now for Chemo patients it's rare I think that folks throw up.  I never threw up once during Chemo and got through it fairly well.  I did have an allergic reaction to it, so they had to change my treatment plan a bit.  I found that I would do Chemo on a Thursday and just hang out around the house until Monday afternoon and be back to normal...so it would generally just make me feel a little poopy for about 4 days.  On Chemo day and the next day I didn't really feel bad...just Sat & Sun & part of Monday. 

    My mom had breast cancer back in the 1970's and I remember how sick she was.  Her entire body bloated up and she was throwing up etc...  What I can tell you is now in 2009, they have made great strides to keep us from puking etc....THANK GOODNESS!   Knowing what my mom went through I almost feel guilty sometimes feeling that I more or less sailed through it.

    Have you thought about seeing a female oncologist?  I tend to go with female doctors as I often find them a little more comfortable to discuss the entire breast cancer issue with.  My breast surgeon actually had breast cancer herself and had already walked in my shoes so it was a comfort to bounce things off of her such as why she almost refused radiation, but changed her mind and the reasons why etc... 

    Just wanted to share that with you...not sure it makes a difference, but hope it helps. 

  • Bono
    Bono Member Posts: 3
    edited November 2009
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    Good morning, just thought I would comment. I chose not to do radiation after conversations with both my oncologist and the radiation oncologist. My regular onco didn't think I should have it considering the mastectomy and the 6 rounds of aggresive treatment. I am glad that I didn't do it and the radiation onco did say that if by chance I had a local reccurance that radiation could be an option then. I just pray that I made the right choice and only time will tell. Good luck with your decision.

  • GramE
    GramE Member Posts: 2,234
    edited November 2009
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    I chose not to do radiation based on many factors, mainly my age (63 after lumpectomy) and aiming for a quality of like versus quantity.   Lump was on the left side, my dominant side and I already have brachial plexopathy, due to multiple reconstructive surgeries on my hand and wrist.  You can google bp for details.   Short version: I have 30% of normal use on that arm/hand for about 30 years.   

    Other reasons:  no lymp involvement, neo adj chemo destroyed cancer cells and shrunk tumor after the first treatment.   (dose dense chemo - 16 rounds before surgery).  Lumpectomy was successful to get clear margins and no cancer cells found.   Left side is the same side as the heart, and lung damage could happen.   Younger friends side effects:   lung scarring, severe skin breakdown and infection, pneumonia, cellulitis, lymphadema and those who reported such side effects and long term potential for lymphadema.  

    I always have the option of mastectomy, bi lat mast, radiation and/or other chemo in the future.  I am er/pr negative, so hormonal tx is not done.   Herceptin for a year showed no decrease in my heart function and my latest mammogram ( yesterday, Nov 5, 2009 ) was clear and I was told to come back in a year.  

    My family and I searched and found many, many articles on long term survival - basically a less than 1% chance of recurrence over 10-15 years with or without radiation.   Discussion with oncologist said  I had a remarkable response to the chemo, but rad onco hounded me to have radiation ( so many phone calls I had to block the number ) because there is NO guarantee all cells were removed.     Long discussions with family and I decided NO radiation at this time.  

    Besides, I was having herceptin and if there was a heart problem, would it be from rads or H?   This may be too much information to process, but I am very comfortable with MY decision.  I can call myself NED ( no evidence of disease ).    Onco says I had a complete pathological response to the chemo.    

  • klvoo2003
    klvoo2003 Member Posts: 2
    edited May 2013
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    Right now I am trying to make a decision on radiation, or not.  The radiation oncologist revealed the short term side effects which include burning of skin, tiredness lasting for up to a year, possible fracture of ribs, possible scarring of the breast implant and possibly additional surgery to replace the implant and a 10-15% increased chance of lymphademia. 

    Long term side effects include possibly skin cancer at sight of scar on breast, bone cancer, or lung cancer - the bright side of this is that it wouldn't happen until maybe 10 to 15 years down the road.  I'm 50 y.o. right now.  She tells me since I am young, these likely will not occur, and she also tells me that my breast cancer is "curable" at this stage (stage IIA, recurrence just recently on left side).  Wish I could believe that part.   Since my BC is ER and PR positive, I am planning on taking the ovaries out, which is far less frightening to me than radiation and/or chemo.   I'm thinking this is ultimately what I will do, along with the Aromatose Inhibitors the doctor will then prescribe, which he indicates works better than Tamoxifen.  I want to keep my healthy cells healthy, and concentrate on making every part of me stronger to combat these nasty cells, not weaker and more vulnerable as these treatments would likely cause.

    I have been a single mom since 2002, and I have successfully supported myself and my two girls with a beautiful home, a happy and loving family, and not much worry in life. 

    I've talked to cancer patients and their families as to what they have gone through with their mom, wife, friend or daughter who underwent various treatments for cancer.  The quality of life is greatly diminished and this is priceless to me.  I cannot see putting myself and my children through endless, painful treatment that will likely cause me to lose my job, my home, and the security I provide for my children.  I don't think doctors think too hard about how many patients end up losing everything, home, job, and in a divorce situation, possibly children due to the horrific side effects of the treatment they recommend.  I am thankful my doctors have been very honest about all the side effects of treatment . . . side effects which I simply cannot ignore.  I really don't know how others can ignore them ?  

    I suggest you attend a breast cancer support group and survey the ladies there.  Ask and listen to those who have had chemo, and find out how many have had a recurrence.  Find out who has not not had chemo and who has had a recurrence. Also find out the type of cancer, stage of their cancers, their receptor status, and lymph node involvement.  Recurrence is common place for those who submit to chemo I found   - not so much for those who refuse with early Stage 0 or I cancer.  Radiation I'm not so sure about. 

    Hope this helps a little. . ..

  • klvoo2003
    klvoo2003 Member Posts: 2
    edited May 2013
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    Hi Carol!

    I read your post and I would like to know how you are doing now?  Also, can you share with me what your friend did holistically?  Is she still doing well?

    Karen

  • melissadallas
    melissadallas Member Posts: 929
    edited May 2013
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    Klv, Carol hasn't been on the boards since November, so she may not reply to you. If you click on a name you can see a list of posts.

  • raspberry
    raspberry Member Posts: 8
    edited June 2013
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    I am refusing because I found out my risk of re-occurence over ten years is 8.3% without Tamoxifen, with Tamoxifen 6.3% - I may go for Tamoxifen. I am happy to take that risk on and not have "pretty much guaranteed scarring of the lungs" as I was told by the RO. 

    When I told my breast care nurse that I wasn't having RT she said "if I had known you would be like this we would have given you a mastectomy".  I told her to never contact me again. 

  • Alcie1
    Alcie1 Member Posts: 7
    edited June 2013
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    I wish I hadn't done radiation. I had only a 6 on the scale. 4 years after being told I HAD to have it, I suffer pain all the time in my breast and my side and where the lymphatics were cooked.  I have recurrent pain and loss of range of motion in my underarm from it also from lymphatic cording (more cooked lymphatics).  I had physical therapy (broke up the cords) which helped, but it's not a cure.

    My stomach was in the field and got cooked too.  I needed that part for a fundoplication wrap for gastric reflux and I can only hope the tissue will hold up.

    I was told I will PROBABLY have a broken rib in the future.

  • raspberry
    raspberry Member Posts: 8
    edited June 2013
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    Oh Alcie1, that sounds abysmal - did they mess up your treatment or was it just too strong? how do they know what people's bodies can handle? 

  • famos8
    famos8 Member Posts: 2
    edited June 2013
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    This is my first post on here.  Raspberry, I am refusing radiation therapy also.  I am 73, was diagnosed last month, had a lumpectomy, very small .50 1A.  Margins are clean.  I met with the radiation oncologist this past week, they want to do 3-4 weeks of radiation.  Some of the latest research states there is no benefit to women over 70.  I also do not want to take arimidex, I read it only extends your life expectancy by 117 days.  I am going the holistic approach, changing eating habits etc,

    This has been a very hard decision, I worry if it is the right thing.  Would love to hear from anyone else with this dilema.

  • moni731
    moni731 Member Posts: 212
    edited June 2013
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    Hello all! I too refused radiation. As someone else said, I had 'every SE known' during a failed chemo attempt. My tumor was on the left, about the 8:30 position, with another one directly under the nipple and at least one + nodal tumor (no ALND). I was finally cleared for rads almost 8 mos after surgery. At this point, I could not face anything else. I was also told of the potential damage to lungs and heart. As I already have severe asthma,  this was an easy decision. I am now 2 years NED. I was told that should I have a local recurrence, I could consider rads then. We'll see. I think we all have to do what we feel is the best choice for ourselves, even if that is not what our doctor's recommend. My onc also said that had she known I would refuse rads and AI's, she would have strongly recommended a mastectomy. But she also added in the same breath that because I am allergic to everything, she felt I could not do any reconstruction! I laughed and told her that would never have been on the table anyway. How nice to know I am not alone with this!

  • raspberry
    raspberry Member Posts: 8
    edited June 2013
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    Hi famos8 (and moni731),

    I am very happy with my decision not to have radiotherapy and I definitely had invasive cancer. The more I read the more I am happy with that decision. If I was 73 there is no way I would have it, and most countries do not give it to women over 65 or 70. 

    I keep finding new information that supports my decision. Today for example I found out that it is most fortunate I also avoided the "boosts" to the bed, because the "bed" is no longer there! surgical techniques mean the original 3D site is now disorientated and can only be known if metal clips indicating its dimensions and location were put in during surgery. So goodness knows what my RO was going to point the boosts at? the scar is not it - what's underneath and where it is now is what matters.

    On top of that she should not have been combining it with the hypo-fractionated (3gys a day) therapy.

    But that is just the boosts part of it. If you want to read what an arbitrary mess the prescribed radiotherapy was for me, read my blog: http://nzmermaid.blogspot.co.nz

    My research may not be all its cracked up to be, but its a lot better than my Radiaton Oncologist's.

    My decision is a lot to do with my cancer being Tubular. I know I am taking risks, but they are mine to take and I care about me more than my Radiation Oncologist did.

  • famos8
    famos8 Member Posts: 2
    edited June 2013
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    Raspberry, thank you for your response and insight.  This has been a hard decision for me, since my surgeon and the radiologist have both been pushing radiation.  I am not a pill taker and I am very uncomfortable with the side effects of radiation.  Are you taking a hormone suppressant?  I don't want to take that either.  My oncologist was wanting me to take Arimidex, I have osteoporosis now and I can't afford any more bone thinning.  I had a hysterectomy when I was 48 and they took my ovaries then.  I can't think I have too many hormones left.

    I am going to read your blog.  I am reading Suzanne Somers book Knockout, validates my decision also.

  • raspberry
    raspberry Member Posts: 8
    edited June 2013
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    Hi  famos8, no I am not taking Tamoxifen either. My surgeon said I had at most 2% improved recurrence rates from taking it and that it didn't weigh up for me.

    I don't know what grade your small cancer is, but mine was Grade 1 measuring 1.6cms plus a bit of in situ cribriform around it.

    Through this process, I somewhat taken aback by some carelessness on behalf of my Radiation Oncologist and downright bullying of my breast care nurse about radiotherapy. Alongside a real arbitrary lack of interest in the individual.

    Whatever you decide, don't let it be because of intimidation. Patients are at their most vulnerable going through this and more susceptible to just "doing what they are told". 

    Here in my country there are guidelines they are meant to be following in regards to informing patients of risks and side effects against each other. This didn't happen but after a lot of research its turns out I have only about 5% improvement in recurrence rates to be gained by having radiotherapy and weighed against side effects, so its not worth it to me.

    Famos8, on most official kind of websites radiotherapy is not recommended for ladies 70 and over. But just do lots of reading for your particular circumstance. I have found my medical professionals didn't want to put that time in.

    You can find out your individual risk if you have your histology report handy here: 

    http://160.109.101.132/ibtr/

    Its a tool doctors only are supposed to use, but there is nothing stopping you and I. I found it very helpful.

    Very few of these prognostic tools even mention with or without radiotherapy, but this one does.

    Additionally there is a lady on these boards who found out although she was supposed to take the Arimadex as she was post-menopausal, she wanted the Tamoxifen to build up her bones and found out she was perfectly able to do this. She asked her doctor why she wasn't offered this and he said "because you didn't ask" . . . . 

  • anne31
    anne31 Member Posts: 3
    edited April 2014
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    I have breast cancer left side, had a lumpectomy and two lymph nodes removed, all clear.

    I saw my oncolgist today and I have refused radiation and any pills. I dont know if I am doing the right thing

    I am so confused. I choose to follow the holistic treatment.

    love Astrid.

     


     

  • annabananas
    annabananas Member Posts: 3
    edited April 2014
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    Hi Famos 8,

    Estrogen is not just made by the ovaries. Adrenal glands also make estrogen. There are also the exogenous sources of estrogen from contaminates in our  environment which are deleterious . 

    I am on Femara, but considering DIM if I cannot tolerate the aromatase inhibitor Femara.

  • anne31
    anne31 Member Posts: 3
    edited May 2014
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    Thank you so much for your information.

    I have refused Radiation, and am trying the Holistic route.

    Astrid

  • danalaw1
    danalaw1 Member Posts: 1
    edited January 2016
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    Hello,

    I am a 36 year old AA women that was diagnosed with DCIS after my first lumpectomy (3mm/grade2/necrosis in these particular cells). I had to go back to get second one to assure clear margins ; which is was clear and tested negative. I saw your post CAROL1949 and I too am struggling with the radiation option. I already have a Naturopathetic physician but would like to hear more about how your friend did her treatment process holistically.

    It is not sitting right with me stopping my antioxidants while doing radiation treatment or the thought of the toxins going in. They want to give me 6000 cg; which is a high dose and I am very concerned. I was told this can knock my recurrence down to 6.5-8% if I do this. I just feel like I could be destroying/causing more harm than good to my body. Another concern is lymphedema being triggered, being a hardcore fitness instructor and the fact I do a lot of upperbody lifting exercises. Is anyone in the fitness field can tell me that has had radiation; if they have issues with lymphedema and if so did they have to stop all together.

    Thank you,

    DL


    (Edited by Mods to delete member's personal email address. We strongly recommend not posting personal information on a public forum, for your own privacy and security. Please exchange contact information using the Private Message feature)

  • BethinRI
    BethinRI Member Posts: 4
    edited January 2016
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    Famos8, are you still here? I will keep reading, but didn't want to lose your post. I was diagnosed on Tues, very similar. The whole radioactive dye, and biopsying chunks of lymph, general anesthesia, and 5 weeks of radiation concept leaves me COLD! Met w a surgeon today, working on a 2nd opin, homeopath Monday, essential oils, etc...I feel like organics, ess oils, no more sangria, NO SUGAR, supplements, etc are the way for me. 100%...in my gut! I'd LOVE to hear how you are doing?? Thanks, Beth. :)

  • moderators
    moderators Posts: 8,069
    edited January 2016
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    Hi BethinRI-

    We're not sure you'll get a response here, since this is such an old thread and it appears as though some of the members who posted here are no longer active. But you may find our Alternative Medicine forum of interest, and you may be able to connect with other like-minded members!

    The Mods

  • BethinRI
    BethinRI Member Posts: 4
    edited January 2016
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    Thank you, I will!! :)


  • not-again
    not-again Member Posts: 10
    edited January 2016
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    Hello,

    Fifteen years ago I had invasive breast cancer. The onc wanted me to do chemo, which I refused, but I did the five weeks of radiation. I had a full axillary dissection which left me with nerve damage and winged scapula for about three months. I didn't have much problem with radiation, not much skin change, but it did change the shape and feel of the breast, which still seems so wrong. I was very active in the gym after I recovered. I found that my arm felt better when I exercised. I don't have the same strength in that arm though. I can't tell if it is from the nerve damage or from rads. I think it is the surgery. My arm hurts and feels swollen but it isn't. Anyway, I think you will still be active and strong if you have radiation. I am now having to decide if I will have radiation for DCIS in my other breast which I had surgery for last month. I am two years out from ovarian cancer and not really wanting to subject my body to more insults.