Trying to decide if I should have radiaiton

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desperate4answers
desperate4answers Member Posts: 5
edited August 2017 in IDC (Invasive Ductal Carcinoma)

I was diagnosed with Stage 2B IDC in January. I am triple positive. I have finished my 8 rounds of chemo and am now recovering from a double mastectomy. The cancer was in my left breast, but I opted to have both removed as a preventative since I am HER2 positive. When removing my left breast, my doctor also removed 4 lymph nodes since the cancer had already spread. The pathology from my surgery showed that I had a complete response, which is the very best news for me. My issue now is to decide whether to have radiation or not. Is there anyone that has had the same cancer and outcome as me? I am really needing advice. I have until Friday to decide.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2017

    If they recommend radiation, I'd do it. You only want to deal with this ONCE!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited August 2017

    What Ruth said. This is the chance to cook any escaped cells. Helps prevent the if only, woulda, shoulda, in the future.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited August 2017

    I have a similar situation! I am going in for my radiation dry run tomorrow so I had one node test positive pre chemo and it was negative after surgery. They had a second tumor board meeting to discuss my case. BS was leaning towards no radiation. RO said to still radiate because it was positive at one time. I don't think there are enough studies to make my RO dismiss radiation yet. I had another twist in that they found a small tumor in my clean breasts and no lymph nodes removed. No radiation on that side for now.

    I'm interested in what you decide Desperate.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2017

    My situation was a bit different. I had one enlarged node which was biopsied and came back negative, but the radiologist considered that a "discordant" result. Surgical pathology later showed no cancer in nodes or breast following chemo.

    Part of why I chose BMX was the avoidance of radiation for my situation - tumor not near chest wall and no positive nodes expected. My MO was very pro lumpectomy with radiation. He prefers to use all modalities now in the hopes of not needing any ever again. I, on the other hand, prefer to keep options open.

    While I really hope to never have to do this again, I don't want to eliminate radiation from my arsenal. I also didn't want to risk any more problems after already going through chemo and surgery.

    So I can't really answer you as far as positive nodes becoming negative and the resultant radiation plans since mine was never proven positive. You just need to go with the info you have and the expert opinions you get and what feels right to you. Some people do everything and still have a recurrence. I chose a BMX to reduce that risk, but it's still there. We make the best decisions we can for ourselves with the info we have at the time.

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  • desperate4answers
    desperate4answers Member Posts: 5
    edited August 2017

    The reason I'm having a hard time deciding is because I'm not sure if the long term side effects are worth the risk. I will be having whole breast radiation. there is a chance of lymphedema in my arm, heart disease, part of my lung will be destroyed, and a risk of developing another type of cancer, among other side effects that aren't as serious. After having a complete response, I was surprised to be told that I would still require radiation, and in such an aggressive manner. What I question is If the chemo killed all of the cancer that they knew about, what are the chances it didn't kill cancer cancer cells that they were not able to get during my surgery? As far as I can tell, the studies haven't been able to definitively state whether it would be necessary in my case. I would like to hear from women who chose not to have the radiation and have not had a recurrence. Or those that did have a recurrence.

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  • atlneurogirl
    atlneurogirl Member Posts: 1
    edited August 2017

    I had the same diagnoses (IDC stage 2B and triple +) and surgery. 2 positive nodes on ultrasound and biopsy which had become negative at surgery. I was told radiation was completely optional and I chose not to do it. Good luck in your decision!

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  • desperate4answers
    desperate4answers Member Posts: 5
    edited August 2017

    Do you mind telling me how long ago that was for you? I have been at MD Anderson and I know that they are very aggressive with their treatments.

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