Whether to radiate

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Sadlynew2018
Sadlynew2018 Member Posts: 222
edited December 2018 in Radiation Therapy - Before, During, and After

Good morning everyone! So, I'm in the midst of ACT. I asked my doctors (MO and SO) whether I'll need to radiate. MO said no. SO said I'm in a gray area but he wouldn't recommend it if it was his wife. I got a second opinion on my diagnosis from MDA. MDA said no radiation needed. I have lymphovascular invasion but no extracapsukar extension. I just want to throw everything I can at this crap. I wanted to reach out to others in the group to see if they were ever in this supposed “gray area"? I see many others with similar diagnoses as me getting radiation and others not. (My details are below).If it was up to me, I would get everything I can.Any thoughts would be so tremendously appreciated.

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  • PebblesV
    PebblesV Member Posts: 658
    edited November 2018

    I think if you’ve had a lumpectomy (and not masectomy) then radiation is needed to help ensure they get and lingering cancer cells that might still be in the breast. If it’s any consolation or help, I’m halfway through radiation treatment (15 out of 30 sessions in) and no side effects so far!

    If you’re of the mindset to get everything you can, I would say based on what I’ve experiwnced and what I’ve read on the board here that radiation is one of the easier things to tolerate. Easy is a relative term I know, but a lot of people get through this with little to no side effects

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited November 2018

    I had the exact same diagnosis. One doctor said do it, another said not necessary, but it would be prudent to do it. I did it for the piece of mind.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    I never considered not doing radiation. Since I dodged chemo radiation was the other option and I was thankful of that. It wasn’t difficult at all for me. Minor burning and a bit of fatigue and that’s it. 33 treatments in all. Techs were great and efficient. I know some women have really bad side effects from radiation but I was fortunate.

    It’s a personal decision that has risks. It’s your call though so do what you think is best for you. Just don’t look back and wonder if...

    Diane

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  • Lula73
    Lula73 Member Posts: 1,824
    edited November 2018

    something to consider...

    1) the bmx just reduced your risk for recurrence by 97% - you baked your cake

    image

    2) the systemic chemo was the icing on the cake

    image

    3) you're ER+ you should be going on tamoxifen or an AI (note: a study just presented at ESMO found that ovarian suppression with zoladex + AI halved the risk of recurrence compared to tamoxifen alone or tamoxifen + zoladex.Throwing everything at it would include AI therapy vs tamoxifen). AI/tamoxifen therapy is the heavy sprinkle crust on the cake. At this point the cake is a beautiful and delicious creation and ready to go.

    image

    3) Rads would be the chocolate ganache drizzled on top. It's the part of the cake that is saved for last (especially if a small person who stole you heart the minute they were born takes a fork to the top of the cake to try it because it looked so yummy and they just couldn't resist and now you have to conceal the damage that little taste created.) Radiating now means you can't have rads later if there is a recurrence. It limits your options. Your medical teams are telling you that you've reduced your risk so much already that rads won't make a difference. It would be like drizzling a tastless (or burnt) ganache on the cake. Alot of work that adds nothing of significance to (or takes away from the tastiness of) the cake. Your medical team as well as the treatment algorithm standards all say you don't want to put that ganache on yet...let's make sure you have it as an option if/when you need it.

    image

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    I think some of the radiation problems have been with women who had reconstruction after mastectomy. Perhaps check on some recon conversations for your specific situation.

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited November 2018

    As you already have a couple of recommendations agains rads, chances are it would add little benefit, but do ask for an appointment with a radiation oncologist, the doc most qualified to discuss whether this would be a good idea for you.. I met with my RO and MO on the same day. The RO's job is to take care of any local recurrence; the MO's focus is on systemic issues.

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  • Sadlynew2018
    Sadlynew2018 Member Posts: 222
    edited November 2018

    thank you everyone. These suggestions and insight are all so helpful. Brook side, I love your explanation on the MO v ROs focus. I'm new to this world and didn't know that. But it makes complete sense.

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  • bella2013
    bella2013 Member Posts: 489
    edited November 2018

    Lula73, great analogy! Excellent explanation!

    Sadlynew2018, do you know your Oncotype Score? That is an important piece of the puzzle.

    What did the pathology report say following your BMX? Were the margins clear? Was there any evidence of cancer in your non-diseased breast?

    Your age also plays a factor in your treatment plan. If you are pre-menopausal then you are still producing estrogen. Why has your MO not started you on Tamoxifin or an AI if you are post-menapausal?

    I am a patient at MDA also. I trust my treatment team and I am very involved in my treatment plan. My cancer stats are somewhat similar to yours. I am 61 years old. My Oncotype Score is 14 with no AI and 9 with an AI. I did the BMX with DIEP Flap reconstruction. Because of my BMX and my Oncotype Score that took chemo and radiation off the table. Did I feel a little vulnerable at first...? Yes, but I have grown to trust my AI...that it is doing it’s job of shutting down all estrogen in my body which is fuel for cancer cells.

    Should I have a recurrence then I still have lots of treatment options available to me.

    These are serious issues to consider...best wishes on your journey to being cancer free.

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  • Sadlynew2018
    Sadlynew2018 Member Posts: 222
    edited November 2018
    Hi Bella!

    I’m 41, onco was 27. I believe my chance of recurrence after both AI and chemo is 13%. I had both breasts removed so not sure re clear margins?? I trust my SO fully. I just want everything I can to combat this beast. I’m 90 percent ER, 70 percent PR. My goal is to have my ovaries removed once I recover from chemo. Then the plan is to have SGAP recon. Radiation is just something that hasn’t been recommended for me. I am “one of those” that needs peace of mind. So if there’s a choice, I can definitely see leaning that way if it would reduce my risk. :-). The insight people have here is so helpful.
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  • MeganB
    MeganB Member Posts: 5
    edited December 2018

    Lula73, Thank you for the cake illustration of treatment! I LOVE it, and it makes me feel sooo much better to see the visual!! :) XO

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