Should I skip recommended radiation?
I am grade 3 DCIS ER/PR negative and had a lumpectomy. My surgeon mentioned that I needed to take radiation due to high grade. He referred me to a radiation oncologist, whom I met this morning.
The oncologist said my recurrence rate is 20 to 25%, and radiation can reduce it to be less than 10%. The side effects include skin irritation, swollen, soreness, and rare lung inflammation. He did not mention anything about angiosarcoma.
I came across this rare side effect after meeting with him. Although the risk is rare, like 0.1 or 0.2%. But this secondary cancer is kind of terminal.
I am wondering, is it ok to not go for radiation? yes, my recurrence rate is high, but even if it occurs, breast cancer is well known and very treatable.
Comments
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Hi @lifeistough25, Deciding whether to have radiation for grade 3 DCIS means looking at the pros and cons. If your DCIS were estrogen+ taking tamoxifen/aromatase inhibitors would be an alternate way of helping prevent breast cancer. However, this is not an option in your case. The 10 to 15% benefit of radiation to reduce cancer occurrence might not seem worthwhile. Invasive cancer is treatable but there is a 30% chance that an invasive breast cancer will eventually metastasize to cancer that can’t be cured.
While serious side effects from radiation are possible they are very unlikely. I happen to be one of the unlucky .2% (permanent lung damage) but I still recommend considering it.
When weighing the options you need to make the decision you’ll regret least even if the worst were to happen. All the best.
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”Invasive cancer is treatable but there is a 30% chance that an invasive breast cancer will eventually metastasize to cancer that can’t be cured.” -maggie
This says it all and is often not noticed through the pink haze. Breast cancer, while heavily studied, is much more complex than most realize. People are often shocked by just how complex it turns out to be. Treatable? Yes, the majority of early stage patients will not recur but despite treatment, there is no way to know who will or won’t recur. I love the research dollars that the pink movement brings to bc, but it has also lulled many into thinking it’s not such a big deal. Definitely double edged sword territory.
All treatment is your choice and yours alone. Take some time to digest the facts (though fears are hard to let go of sometimes) and come to a place where you’ll have no regrets regardless of what happens in the future. And side effects? No guarantees but serious or long term damage is unlikely.
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Thanks for sharing this "Invasive cancer is treatable but there is a 30% chance that an invasive breast cancer will eventually metastasize to cancer that can’t be cured.", which I am not aware of.
I guess I should not worry too much of very rare possible side effect. It is probably best to follow my care team's plan.
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Hi again @lifeistough25,
We're just checking in on you - have you started your radiation treatment? If not, when does it begin? We're thinking of you and wondering how it's going.
—The Mods
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I went through BC treatment in 2023. I was HR+ HER2 Negative. One node positive.
My treatment was TC × 4 chemo (I cold capped to keep most of my hair), then 30 radiation over 6 weeks.
I am now on Anastrozole + Verzenio + Lyrica.
My oncotype was a 14.
I had a total hysterectomy including overies this past October.
I chose to do all I could do. That way, if it comes back, I know I did everything I could do.
You have to do what feels right to you.
Honestly, radiation was pretty easy. I took off work and treated myself to a iced coffee after every treatment.
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DCIS Hr Positive
Had lumpectomy last week clear margins but was Hugh grade so now
Radiation or nor and Tamoxofin or not
And that’s the question !! Thank you
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cove homes,
All treatment choices are yours, and yours alone. Breast cancer turns out to be more complex and with many possibilities for individual variations. The experiences of others and historical data tell you how others in similar circumstances did in the past. As far as individuals going forward? They have no predictive value at all. My suggestion would be to learn all you can about the pros and cons of proposed treatments, but vet the source for accuracy. Seek a second opinion, which can be comforting or at least illuminating. Finally, understand that bc comes with no guarantees surrounding recurrence. It can reappear decades later. Bearing this in mind, make the decision that comes with no regrets regardless of what might happen in a future we can’t see. This is a very individual choice and in the end you need to do what’s best for you, just do it from understanding facts , not emotional fears and anecdotes. We are all looking for certainty in our tx decisions but there isn’t any with bc. Yes, very frustrating. Take care
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I had my lumpectomy on May 1. Clear margin, intermediate grade, ER positive, remained DCIS and lymph node biopsies clear. I've read the posts about radiation, meds, etc. I am gathering my questions to ask the oncologists. Any suggestions?
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