Has anyone refused radiation?

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There is currently a disagreement between my BS and MO about the advisability of rads after chemo and mastectomy. MO agreed to take it to tumor board tomorrow and perhaps get a tie-breaker.



I'm very anxious tonight, and wonder about if they recommend (mildly) doing rads, would I have the courage to say no to rads. I have had enough treatment. Chemo had lots of uncontrollable SEs and I've had recon already.



Has anyone refuse rads?



Peggy

Comments

  • Maureen1
    Maureen1 Member Posts: 614
    edited May 2013

    My MO and BS both said they wanted me to meet with a RO to get another opinion on whether to do rads. They did not feel it was necessary. I met with two RO's and both said it was "up to me", they said it would only prevent local recurrence in the affected breast but not in the opposite breast and did nothing to prevent DM. They also both agreed that the possibility of damage to my lungs, heart and ribs was a greater risk than the damage of local recurrence so I decided to go with the bilateral mastectomy instead of radiation. 

  • AmyQ
    AmyQ Member Posts: 2,182
    edited May 2013

    I am seriously considering refusing rads as I'm not sure the benefit outweighs the risk. I'm already Stage 4 with multiple bone mets - the targeted area is my right underarm where 2 of 3 lymph nodes were positive for bc. I've had a bmx and currently going through 6 treatments of TC.  I just don't understand the benefit for me.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Peggy, I, too, am in a scenario where 2 of my Drs are at odds with each other: 1 is my BS; the other is a RO that the MO my BS referred me to (saw him once, and no longer will do so!). In fact, I was very perturbed when - instead of these 2 MDs TALKING to each other (verbally) I was kind of selected to be the "go between" person - which I did NOT appreciate (for what I am paying THEM to do!) E.g., "tell Dr. X THIS, when you talk with him & explain that...."). Enough!!!

    In my case, I was originally to get a lumpectomy + rads, but had to go to a MX (and then selected BMX) when DCIS amt in my L breast was larger than DX mammo showed 2 months prior!. BS told me "I got it ALL" - which kind of didn't square with the RO I saw, when he saw the term "positive margin" - - yet it was confirmed to me by my BS and CNP that "all my margins were clear." I can't believe an MD would rely on just a term on a computer screen vs. picking up the phone & talking to the Dr. GO figure, huh?

    In any event, my mind is made up: I will not do rads. Point #1: I am a 5-yr heart attack survivor; rads would be on L breast; 'nuff said. Point #2: BS left xtra breast tissue to allow for POSSIBLE future reconstruction. I understnad having rads nixes the skin pliability that PS look for. Point #3: I also understand that we can only have rads done ONCE (same area?) in our bodies. Unfortunately, I found that having BC is a lifelong condition, and, since nothing is guaranteed, what IF (?) BC comes back to same area, at some later date? I know this sounds twisted, but with all I've gone through so far, I just MAY need rads - come what may - IF BC rears its ugly and evil head at some later date in my lifetime....

    Lastly, I've done a lot of research on things like rads, positive margins, etc. Given my stats, and having ONLY just a microinvasive (1.5mm) of IDC within my DCIS, I really DO believe in my case (as do my BS and CNP) that rads are DEFINITELY not needed in my case.... and I have to agree! :)

  • Graciej
    Graciej Member Posts: 8
    edited May 2013

    I am 4 mos from lumpectomy. I have bled had leaking blood from stitches and now blisters. They say fistular. I do NOT want radiation whenever I get better. I had grade 1 lobular ca.

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