2nd Recurrence - Radiation Questions

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sjeilers
sjeilers Member Posts: 12
edited January 2015 in Second or Third Breast Cancer

I was originally diagnosed 3 1/2 years ago with stage 2 BC. I opted for the bilateral mastectomy and had 4 rounds of chemo.  I am now on Arimidex.  I have had reconstruction with implants.  I was diagnosed last month again in the same breast.  It was a local recurrence.  It was found at a stage 1.  They were able to remove it and save the implant.  Both times I had negative lymph nodes and negative for the surrounding margins taken out. 

Here is my dilema.  I meet with my oncologist on Thursday.  I've already been told the next protocol would be to have radiation, even if I had my implant still in.  My biggest concern is I have very sensitive skin issues.  I sunburn in 5 minutes.  When I had my tissue expanders in for my implants I had to do 50cc fills becuase my skin wouldn't stretch any farther than that at a time becuase I don't have alot of elasticity in my skin.  I am very concerned about how bad this will burn me and the other complications that may go along with it due to being so sensitive.   

Are there any other ways I can help prevent having an occurence again if I don't do radiation?  How much does it really prevent it from coming back? I've been reading alot on the different types of radiation, but they all seem to run together in my mind now and I'm not sure what to ask about when I go in.

I will also be driving and hour to and from appointments if I have radiation, will that cause problems?  Should I consider not working during this time?  I have a very active job where I am constantly moving around and doing things.  Any information would be great appreciated.

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited September 2013

    Sorry you have joined my club. I am a local recurrence after mastectomy also. I had a 5 mm tumor in the skin with no nodal involvement or distant metastasis. Radiation is the standard recommended care. I had chemo too even though I am extremely ER and PR positive and had a low oncotype. After rads I will be suppressing my ovaries and taking an AI. So you see the treatment has been more aggressive than a first tumor would be. I just started rads this week. I also have very sensitive skin with rosacea but I want to do all possible to get this under control.



    From what I hear you should be able to work but will get more fatigued the farther you get in treatment. Check out the radiation section for more info or questions.

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  • sjeilers
    sjeilers Member Posts: 12
    edited September 2013

    Thanks for your response.  I want to do everything I can to get rid of it as well.  However I have a lot of concerns about more problems in the future due to having radiation and how much of a percentage does it really help, and is one type better than the other.  I have been reading over the radiation boards and their is so much involved.  At this point, I'm just anxiously awaiting my appointment with the oncologist to see what she has to say now.

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  • cindee56
    cindee56 Member Posts: 75
    edited September 2013

    Hi there, just wanted to let you know I was diagnosed in 1995 with BC.  I had lumpectomy with chemo for 4 months every 3 weeks and then 3 weeks of radiation 5 days a week for 10 min sessions.

    All I can offer is that my oncologist told me if I chose radiation with my chemo it increased the chance that I would not have a recurrence by an extra 35% (that may be different now) but wanted you to know I had no burning at all, maybe a little redness and did not notice any fatigue that affected my lifestyle.

    Hope this helps(((HUGS)))

    Cindee

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  • NG555
    NG555 Member Posts: 3
    edited November 2013


    Back in my day (I always wanted to say that!!!) the radiation therapy was completely different. It was very cruel and pin-pointing meant everything from your shoulder down to the bottom of the rib cage.


    I never burned from the radiation, but strictly because my breasts were big (bigger than DDD), they had some weeping on the lower half of the one. I drove myself to and from the appointments (2 hrs each way) and still worked full time (and had an infant and toddler when I got home). I'll be honest, I was soooo exhausted. BUT, it can be done.


    Its my understanding that the technology out there today is SO MUCH BETTER when it comes to the radiation. They can 'pin-point' stuff now and the type of radiation I had in the early-mid 1990's has been gone for a long time now. Rest assured that many people get through this and you can too. Each of us is different both in make up and in the way that these procedures feel to us, but we all have that inner strength that is so important.


    I did not have implants, so I cannot even begin to tell you things from that view, but I would rely on what your trusted radiologist is telling you. They have seen many people with many different types of cancers. They know the technology the best and, as your doctor, can give you the best information when it comes to what to expect for your breasts.


    Just know that you are not alone in this...


    NG


    PS - The breast specialist I saw yesterday explained to me that they are seeing that the radiation therapy I took so long ago gives at least a 10 to 20 year window before any re-occurance. I'm at 18-1/2 yrs and MIGHT have a reoccurrence (pathology to be done next week). Not bad for someone that they didn't think would be around for even a year!!!! I've gotten to see my children who were just babies become adults and after I deal (possibly) with this.....I'll be able to see any future grand-babies heck, maybe great-grand babies


    :-)

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  • arby
    arby Member Posts: 126
    edited April 2014

    I am sorry for this dilemma and I am glad for your thoughtful approach.  I will tell you the first question I asked after getting the standard care for invasive ductal carcinoma stage 1, grade 3 in 07.  I had lumpectomy and 33 rounds of radiation.  Didn't the radiation work?  Recurrence in same breast under 2 yrs . I am fair skin and got burned the final 3 weeks. That's when I took time off work.  However, lest we think radiation is pretty safe these days, I had radiation recall in 09 while undergoing chemo for the recurrence.  That condition was like being radiated for free!  and I got cellulitis on the chest and had a host of antibiotics thrown at that. I don't know if my being fair skinned put me at a greater risk for the radiation recall/ if it was the chemo drugs that triggered it.  I do advise that you ask for protection for your face and neck, some sort of shield should be offered.  I never had it and the recall clearly showed by my burning red face and neck that I had lots of scattered radiation outside of the marked (tatooed) area. Your skin quality, texture, elasticity will be compromised by the radiation, so please protect the areas not in the breast.

    I hope that more responses will come in to sorta balance my bad experience.  But I was so naive going into treatment. Forewarned is forearmed...that's my gift to you.

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  • funthing42
    funthing42 Member Posts: 418
    edited January 2015

    Hi

    I'm on my 3rd breast ca in 5 years.

    2009 Stage 1 0.8 cm neg nodes Lumpectomy/Rads /boost in the tumor bed. Lupron and arimadex.

    Same breast 1.2 cm stage 1 neg nodes 2013 Dec.

    Jan. 2014 B/L masectomy Chemo TCH finished in July. Still on herceptin

    OCT 2014 SKIN recurrence locally.

    Pet Negative.

    Now I'm told more Rads are needed. But not giving me more chemo. Aromasin and Lupron.

    One day I would like to have breast again. I am worried I will not be able to reconstruct due to skin damage.

    The first time Rads where so mild I thought It wasn't strong enough. Just a slight sunburn no pain.

    So this time Uhm ???

    I feel like I'm playing a bad game of poker.

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited January 2015

    Speaking only of burning from rads, my radiation onc. told me that being fair skinned has nothing to do with tendency to burn, so my advice would be to talk to RO before making up your mind.

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