ILC Diagnosis, Saying No to Radiation

cbsmom
cbsmom Member Posts: 3
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hello, all, in Aug of 2012 I was diagnosed with ILC and had a Bilateral Mastectomy followed by AC/T Chemotherapy.  I was originally told I wouldn't have radiation, but this week the radiologist suggested I have it. I am in the gray area because my tumors were small, only 1 positive lymph node, and clean wide margins. However, the rad doc is saying my age is a factor (33) and it would be beneficial. 

I say no way, I don't want them, it isn't worth the potential side effects.  Anyone had to make this choice? Is it different for ILC than for other types of breast cancer? Any help is much appreciated, thanks!

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  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    CBSmom, I think I would go for it. The SEs are potentially bad news, but I think that on balance they are worth it, in terms of survival. However, the best thing would probably be to seek a second opinion and have a good discussion with your onc.

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  • Katski
    Katski Member Posts: 55
    edited February 2013

    I had my stimulation today.  The RO told me I had a 75% cure rate by doing the radiation.  I really would like to run from this but it is not a good idea.  Unfortunately, I can't have the boosts done b/c my both tissue expander came out in November and the remaining skin is all over the breast area and the RO can't zoom in on the tumor site due to the unknown.  I am disappointed on this b/c the rate of cancer reoccurring is 1 to 2 percent and knowing my body, it will probably be lurking.  I know the percentage is small but for me my chances of recurrence was that in 2005 and then the sneaky cancer came back with those low odds 7 years later.  You should reconsider radiation and if you do, you can do as many treatments as you can tolerate to lower your chances.  As I write this, I want to just go on a trip and forget but I know it isn't in my best interest to be here after 10 years for my family.  Your decisions are your own and you have to do what is right for you.  Just keep asking questions until you are satisfied and if your RO is saying things that you just can't get a grip on, get a second opionon.   Good luck with whatever you decide.  I know the ladies here will support you with whatever you decide.  Cancer sucks as do the decisions only you can make.  Kat

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  • mary625
    mary625 Member Posts: 1,056
    edited February 2013

    I did it--no real choice for me--but it was a breeze.  I realize that there could probably be side effects, but not even a year later, you can barely see any discoloration of the skin, and my skin is just the same as it always was.  My breast surgeon was so impressed with it today.  Honestly, if think if you're in good hands, you'll be okay. 

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  • quiltrunner
    quiltrunner Member Posts: 101
    edited February 2013

    cbs mom - I was considering not doing radiation as well.  I finish my last chemo on Friday and I'm just ready to be done with it all!  I had several reasons for not wanting to do radiation and questioned my oncologist about this a few weeks ago.  Her comments were valid - IF the cancer comes back I would wonder if I shouldn't have done more when I had the chance.  I'd always be looking over my shoulder.  I think that was good advice.  I have my simulation on the 21st.  I don't want to do it, but I don't want to do this again either.

    Good luck in making a decision.  So many decisions to make, huh?

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

    Hi, ILC-er here. Nodes positive, stage II, grade 1.  Dx 9/2011, ACT beginning Nov. 2011; rads from April through May 2012. I wanted, and asked for, everything and the kitchen sink thrown at me by my MO and RO so that I KNEW I had done everything I could to stop this stuff in its tracks.

    Radiation was not a big deal for me. I had some redness and a bit of peeling, but nothing I couldn't handle with the prescription cream they gave me to use.  Going once  a day for 33 times wasn't fun but it was temporary.  I'm through it now and planning a bmx with immediate recon. in June. I've had some tightness in my pectorals, but I am a regular yoga practitioner and have full range of motion because I'm active. I just keep stretching. No LE, no other problems or damage (it was in my right boob) so far.

    ILC is sneaky.  Got to kill it now before it sneaks off someplace else...

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