Axilla rads with micromets

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BarbaraA
BarbaraA Member Posts: 7,378
edited June 2014 in Radiation Therapy - Before, During, and After

I will be starting rads in the next two weeks and had micromets in 1/4 nodes. Interestingly, I had unclean margins so we did a re-excision 10 days later and not one cancer cell. I am convinced this was due to veggie/anti-cancer foods diet and exercise. So my thought is: I REALLY do not want to radiate the axilla. Has anyone made that decision? I would be very interested to hear your stories.

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  • Luah
    Luah Member Posts: 1,541
    edited May 2010

    I had micromets in 1 of 4 nodes (SNB).  I had a choice between a second surgery (ALND) or radiation to axilla. For various reasons, I chose the former. (It would never have crossed my mind to do neither.) Ten additional nodes were taken, no cancer. So my rads now are to my breast area only.  The stage, grade and pathology of my tumour affected my decision. I also had chemo.

    Diet and exercise is very important, but I see them only as long-term adjunct therapy, not as a replacement for standard medical care.  That's just me, though.

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  • HealthyDiane
    HealthyDiane Member Posts: 4
    edited June 2010

    Hi Barbara,

    I had a micromet in 1 out of 9 nodes removed.  I went to different rad oncs, and they offered differing opinions on what to radiate.  I went with a doc who IS radiating the axilla, although I vacillate between being mad and sad that I chose him.  (choosing him is another story)  I hate the thought of having the axilla radiated.  I hate any radiation. One thing that calms me is that one doc told me that the axilla would still receive some radiation from the beam going to the chest, but that it wouldn't be a therapeutic amount.  So if my axilla was going to get rads anyway, at least it's a therapeutic amount.  I'm not doctor - please ask your rad onc about this.

    Today is day # 10 for me, so I'm definitely still living this.  Good luck to you!

    Diane 

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  • blueballoon
    blueballoon Member Posts: 14
    edited June 2010

    I made a big mistake in allowing my armpit to be radiated. I had one positive lymph node which was completely encapsulated -- NO extravascular extension -- and I had a full axilliary dissection. My surgeon told me that radiating my armpit was not necessary.  But when I asked the radiation oncologist about this, he insisted that I MUST radiate the armpit.  So, I got opinions from other radiation oncologists, and they were split down the middle. I was completely baffled; and then unfortunately, I made a big mistake:  I let the radiation onc radiate my armpit... And I'm now living with lymphedema for the rest of my life.  My lymphedema therapist told me that radiation mats down lymph vessels, as well as any remaining lymph nodes. Too late for me! Now I have to wear a compression sleeve and glove during the day, and I spend a half-hour wrapping my arm every night. Every morning I have to do 13 minutes of manual lymph drainage exercise.  I firmly believe that radiation is a much bigger deal than the doctors want us to believe; and I am not happy that I was not fully informed.  If you have super clean margins on your lumpectomy (mine were enormous) and your encapsulated lymph nodes have been adequately dissected, think twice about doing radiation on your armpit.  I would never do it again. 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2010

    Blueballoon,

      Just wanted to respond to how you're feeling about the lymphedema--I have it also, and it is HARD to deal with. It sounds like you're doing everything you can do to keep the arm down, and with such good care, hopefully with time, the lymphedema will get easier and easier to manage.

    A few of us who post on the lymphedema thread created a web site, to keep track of commonly asked questions:

    http://www.stepup-speakout.org/index.htm

    There's a page on emotional reactions to lymphedema

    http://www.stepup-speakout.org/patoconnorcopng.htm

    You made the best choice that you could with the information you had available.

    Ironically, about a year after I completed radiation, I started to work for a rad onc, and while I was going through it, I kept asking my rad onc for answers, and she was intentionally vague, and finally said: "Why do you worry so much?", and I said "Because you don't seem to."

    I got lymphedema early, three weeks out, due to axillary web and an axillary seroma, and neither my surgeon or my rad onc deallth with the seroma until after rads.

    Currently, I have a woman I've seen in the office who got a huge arm after axillary radiation and surgery--she had a recurrence--and for a while, she just didn't have the emotional energy to deal with her arm. And she is finally getting treatment for her lymphedema, and feeling so much better.

    The consent form at my current office, for breast radiation, says a possible side effect is lymphedema, while my rad onc said that radiation couldn't cause lymphedema! (Many, many studies out there that show it can. It makes me mad that she was so dismissive.)

    The risk is real, you're right. We have to weigh the risks of treatment against the benefits. Lymphedema rots, but we want to be here with swollen arms, rather than not here.

    I don't have a lot of swelling, but it's made a huge impact on my life.

    It's hard to feel like you made a mistake--we're put into a position of making very, very important decisions, often with conflicting advice, and again, you made the best choice you could.

    Kira

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  • Luah
    Luah Member Posts: 1,541
    edited June 2010

    Blueballoon: So sorry to hear about your lymphodema... that is bad enough, try not to live with regret too.  I wasn't given the choice of both node surgery and axilla radiation (I did the surgery) - if I had been, I might have gone for the rads too, just to throw everything I could at my cancer, which is aggressive.  As you probably know too, axillary node surgery is a significant risk factor for lymphodema, and can appear weeks, months or years later, so who knows, it may have been the culprit...  but there's no point in second guessing.  I do hope your lymphodema improves. All the best!

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