Radiation. Yes or No?

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desperate4answers
desperate4answers Member Posts: 5
edited August 2017 in Radiation Therapy - Before, During, and After

I was diagnosed with Stage IIB 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.

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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  • lynae23
    lynae23 Member Posts: 85
    edited August 2017

    Hello desparateforanswers! I have the exact same question as you about rads! I am stage 2b with invasive lob carcinoma and did 5 months of chemo (taxol &AC) followed by BMX with tissue expanders in both. My path results came back all clear. Nothing in lymph nodes and all margins clear, but because the tumor bed measured 7.5cm they recommend rads. Anything over 5cm is automatic recommendation. I really dont want to! I look forward to the responses from others

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  • desperate4answers
    desperate4answers Member Posts: 5
    edited August 2017

    Thanks for your response, lynae23. It is such a hard decision to make. Up until now, I haven't had a choice in what needed to happen, and I liked it like that. Everything, up until now, has been pretty standard. The chemo regiment that I was on was pretty aggressive, but MDA is known for that and I'm thankful because I did have a PCR. Just what we all hoped for. How long do you have to decide? And, I too, and anxious to see more responses.

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  • muska
    muska Member Posts: 1,195
    edited August 2017

    Desperate, Lyna, when unsure it is always a good idea to get a second opinion from another radiologist. I am not familiar with the protocols when chemo is given before surgery and have no knowledge what exactly they mean by Complete response. Have you asked why they recommend radiation if you achieved CPR as proven by surgery? Is it because there is no way to prove no cancer left in lymph nodes or close to chest wall?

    I had standard rads cycle in 2013 and so far have had no side effects from it. No destroyed lungs, lymphedema or damaged heart.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited August 2017

    Hi Ladies.....I just wanna write my own experience

    First Diagnosis Had 4 D D AC and 4 D D TAX followed by Herceptin for one year and Radiation

    I only had a lumpectomy no nodes were involved

    I was Ned for 10 years and 4 months when a routine mammogram showed cancer had a BMX and lighter chemo because sentinel node had micro cells.

    Taking Letrazole for 5 years like I did years ago.

    It was a new cancer since it was in the opposite breast.......

    Just sharing

    Good luck to both of you.

    Sheila

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  • WorryWartSuzie
    WorryWartSuzie Member Posts: 29
    edited August 2017

    I strongly feel radiation is a good idea. I am on the tail end of mine (23 of 33 treatments). The worst part is the daily trips to the hospital for it, but ironically I worked in Radiation Oncology in the 1990s, and saw all of the tremendous things it can do. Second to surgery, I believe it is the best local control that we have. I had mastectomies, 11 positive nodes removed and 16 intense courses of chemo, and even after all of that, I still wanted radiation. It is a personal choice, of course, but consider the good it can do. Also, I had left breast cancer, so my treatment is intensity-modulated so that it protects my heart.

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  • lynae23
    lynae23 Member Posts: 85
    edited August 2017

    Desparateforanswers I have a week or so to decide because I only had my BMX 3 weeks ago but honestly I think I have already made my decision NOT to! But I am still wanting to hear from others who are in the same boat as us!

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  • muska
    muska Member Posts: 1,195
    edited August 2017

    Luna, if you published your profile like everyone else it would be easier to see who is in the same boat with you. Recurrence risks vary significantly by stage and other details of your diagnosis

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  • gb2115
    gb2115 Member Posts: 1,894
    edited August 2017

    It's probably because you had positive lymph nodes. At least that is how your message reads---is that accurate? You said it had spread, so they are probably trying to prevent further spread from any cells they may have missed, and that chemo didn't kill. Also, whether or not they recommend rads has to do also with location/size of the tumor. If it was close to your chest wall, they'd probably want to zap the chest wall. And if it was close to the skin, they would want to get the scar area since recurrence would be higher there.

    My situation was a little different, but I can share from the point of view of someone who already went through radiation. I had a lumpectomy, so I knew I was headed for radiation, but when they found a positive lymph node, they piled on radiation not only to my axillary nodes, but to the ones under my collarbone as well. My RO described it as "sanitizing" the area because of the positive node. In all honesty, for me (everyone is different), I would rather have side effects than a cancer recurrence, and the fact that those cancer cells were already on the move scared the daylights out of me. I am also young with a small child, so that makes a huge difference--I was happy to take any treatment they wanted to throw at me. I want to see my little girl grow up. So as annoying as radiation was (and it was significantly annoying), I'm glad I was able to get it. And no lymphedema or lung damage here--at least not yet, I am 6 months out from rads. I have some residual shoulder soreness that I think is from getting my nodes radiated along with scar tissue from the sentinel node biopsy, but I am still able to enjoy my daily life. I just have to listen to my shoulder to not overdo things,and when it starts to hurt, to try to rest. But it's ok. I have no regrets on doing radiation.

    Hope you are able to make a decision that gives you some peace!

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  • Mandycat
    Mandycat Member Posts: 52
    edited August 2017

    I wondered whether to do radiation or not but have opted to do it and feel comfortable with the choice. I had a rare aggressive cancer. There wasn't a choice for it when I filled out my profile. I have pleomorphic lcis with small Focus of invasion. One doc told me I needed radiation and another said I didn't. I tried not doing it and started armidex but couldn't tolerate the side effects. I'm high risk for reoccurrence so I felt I needed something more. I called RO and asked if I could still do radiation and was really glad he said yes. I just had my first week. No problem so far. I feel safer and happier this way.

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