Radiation benefits & Risks for early stage cancer
Hello, I am preparing for lumpectomy and then radiation/AI expected. Despite bilateral the surgeons feel I am a good candidate.
Any suggestions on where I can get risk/benefit analysis for radiation treatment?
I am 58 bilateral IDC/DCIS Grade 1 T1b no nodes
ER/PR+ Her2neg No BRCA genes and low Ki-67
I have spoken with doctors and yet I can't get a clear sense of value/risk. I have used the predict calculator and radiation seems of low benefit?
Where do you find the likelihood of return for similar stage/type cancer?
I see comments about "30% reduction" but reduction from what chance of recurrence? It is a big difference if recurrence rate is 8% vs 80%.
And I understand Rads can only be done once to breasts. So if chance of recurrence is low… why not reserve that for a recurrence then hit hard so to speak? My oncologist feels metastasis is unlikely for me and if a return most likely to be local.
It seems like a practical consideration to me and obviously with some risk but that is what this is all about risk vs benefit.
I am older so quality of life throughout for my next decade is a big consideration for me.
Thank you for any feedback.
Ella
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Hi @ella26, The best place to get a risk/benefit analysis for your particular situation is from a radiation oncologist. ROs are sometimes not as accessible as breast surgeons or medical oncologists but there will be an RO in charge if you have radiation. If you have spoken to a RO you could message them via your patient portal asking for a statistical calculation. If you have not, ask for an appointment with one even if you end up getting treatment supervised by a different RO or not having radiation.
The general benefit is a 35 - 50% reduction in local recurrence. The benefit for IDC is lower than the benefit for DCIS which is why you want a personalized answer. The reduction is subtracted from the recurrence rate with no treatment other than surgery. If your recurrence rate is 30% then radiation would reduce it by 10.5 to 15% leaving you with a recurrence risk of 15 to 19.5%. Since rads mainly prevents local recurrence the survival statistics indicate that radiation has little effect on whether you die of breast cancer. Since the dose of radiation allowed is limited a mastectomy is the treatment for recurrence in a radiated breast.
The other piece of the puzzle is endocrine therapy which has its own risk reduction stats, The two types (AI and tamoxifen) work in different ways and have a variety of possible side effects. If you are not going to commit to 5 years of these meds then radiation is more important for prevention. For women over 50 there are hypofractionated radiation protocols where larger doses are given over a shorter time period and the total dosage is less but just as effective. Two of these are FAST (5 doses one every week for 5 weeks) and FAST forward (5 doses once daily for a week.) These options might not be available everywhere but large teaching hospitals usually have them.
There are risks associated with rads which you can read about in the topics section on this site. Many people have some redness, skin peeling, swelling and fatigue which clear up. Lymphedema risk is about 5% for WBRT. Other serious SEs do occur in less than 1% of patients. The only contraindication publicized is scleroderma but there seems to be a higher risk of complications for anyone with an autoimmune disease. Make sure to tell the RO about any medical problems you have.
Disclaimer: I had whole breast and axillary radiation (one positive node) because I had decided not to take AIs/tamoxifen due to their detrimental effect on other health issues I have. Unfortunately I ended out with several serious side effects to my lungs and neck region. The pulmonologist I was referred to told me that a lung cancer RO would have taken note of my medical history (upper GI bleed, Barrett's esophagus) and recommended against rads. MD Anderson is investigating how a mutation in the TGFbeta1 gene (which I most likely have) seems to trigger many of the serious reactions. They are hoping to develop a test to identify patients with it but research is in the early stages.
I still think I made the best decision I could with what I knew at the time and believe that radiation is safe and effective for most people. Unfortunately statistics can't predict what will happen to you and hindsight is 20/20. Cancer recurrence can also be serious, however. All the best with your decision.
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Maggie, thank you for taking the time to share I appreciate it and it is helpful to me.
Yes, I am insisting on a meeting with the Rad oncologist. In the meantime I am trying to educate myself and hear from people who have been through it like yourself. For better or worse. All of this is unknown to me and I want to make the best decisions I can.
I'm sorry to hear you had complications but as you say, we make the best decisions we can at the time. Treatment has costs and I accept that within reason.
Best, Ella
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My advice is to have radiation. The goal is to get rid of any cancer cells that may be lingering (and are too small to detect) NOW. There is no use to 'save it for later' because if there are any cells left, they will escape and show up in some up of the body. Then you will be Stage IV. 58 is young!! You want to do everything you can to ensure many more healthy, cancer-free decades of life! For what it's worth, I found radiation to be the easiest part of my treatments (lumpectomy, chemo, radiation & 5 years of an AI).
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Update: I'm post surgery, we have my final cancer findings. Between my oncologist and the Rads oncologist in charge of my treatment here is where I stand
Chance of local recurrence 6-10%. Rads will reduce the risk by 30%… that's a reduction of 1.8%-3% risk.
I will focus just on heart/lung but Rads comes with a 10% chance of lung damage/fibrosis and as things stand they say I will have some lung damage but will "compensate" and I have a 3-5% chance of cardiac damage which would show up in later years. I am bilateral so left side and the tumor right up against my chest wall. So boost doses are left side and deep.
They said this radiation will reduce local recurrence only… it will not reduce my chance of metastatic cancer in the future… that is what the AI's are for and I don't have a figure there yet.
They want me to do it but it makes no sense to me to incur greater risk. We all talk to me again next week and they are now running a genomic test (Endopredict) now which might shed some light?
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FYI I am T1bNO RO Grade 1 & 2 (11mm) but that "worst" left side has big margins due to the reduction. The Rads offered is 5days/week (2wk+1day) 40Gy + 10Gy boosts. Whole breast radiation, both sides.
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The EndoPredict genomic test helps predict recurrence early (0-5 yrs) and late (6-10 yrs.) It is another piece of information to help you make your decision. AIs reduce your risk of recurrence by 50%.
The fact your doctors think you will have some lung damage but will "compensate" indicates they are not ILD pulmonologists. Pneumonitis, inflammation of lung tissue, can often be reversed by a course of steroids leaving no damage. Once it progresses to pulmonary fibrosis the scarred lung tissue no longer functions. Some people end up with a small area of fibrosis which is not a big deal but if it continues to spread it can eventually destroy the lungs. There are antifibrotics which slow the progression but there is no cure. Steroids eventually stopped the fibrosis in my right lung after two lobes were affected. I have a terrible cough from exposed nerves in those lobes and still live like it's covid lockdown since respiratory infections can cause an exacerbation, increasing the fibrotic tissue. While my breast cancer might never recur I now have a 58% chance of getting lung cancer.
My tumor was also up against the chest wall which is why my RO felt radiation was essential. You might get through rads just fine or have easily fixed / inconsequential lung damage. Since your radiation is bilateral you need to worry about both lungs, however. There is no knowing how your body will react so you just have to make a decision you can live with whatever happens.
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Maggie, thank you so much! You are extremely well versed and explain it very well. I will bring all of this to my appointments next week. I am sorry you had damage and now a higher risk of lung cancer. If you don't mind explaining why do you risk increased lung cancer now? Thank you again!
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Ella, extensive pulmonary fibrosis puts you in the category of having ILD (interstitial lung disease.) It is a niche pulmonology specialty dealing with those who have PF because of autoimmune conditions, toxic exposure (like radiation) and IPF, by far the largest category where people develop progressive lung scarring for no known reason.
If you have another condition which may have caused prior subclinical ILD (in my case silent GERD causing gastric acid and pepsin aspiration) chest radiation increases your chance of developing lung cancer 5 to 11 times compared to a general never smoker female. Things in addition to what I've mentioned like family history of IPF and exposure to toxic substances (mining, construction, agriculture, birds, mold, certain meds) fall into the very high risk category. Without complicating conditions the chance for lung cancer with ILD is increased to 2 to 3 times the average. Being a smoker/former smoker or having long term exposure to second hand smoke/air pollution ups the risk.
Serious RIPF is rare for breast cancer (.3% of those who have radiation) but your treatment sounds more aggressive than the norm. A rads plan should show scatter which is much less intensive but can affect a wider area than what is targeted. Someone who posts on the CT chest thread had rads to just one breast after lumpectomy but is having radiation healing issues after BMX DIEP on the radiated breast and adjacent area of the ipsilateral breast, evidence of scatter damage. I had treatment at a well known teaching hospital with excellent equipment and dosimetrists so it can happen anywhere.
Lung cancer ROs see RIPF more frequently since they target the lungs so getting an opinion from one of them might be an option. You are doing a great job gathering relevant information to ask questions and guide your decision.
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I have similar. Left Breast stage 0 DCIS and Right Breast IDC Low grade stage 1. Waiting on ONCO test score. I opted for Double Lumpectomy. 2 sentinel lymph nodes removed and were clear. Diagnosis 3/16/26. Surgery 4/17/26. I wish I could go back in time and choose the Double Mastectomy. I am so scared of the radiation since it's both breasts. I will be making my appointments tomorrow with radiation oncology and medical oncology. I know Radiation has come a long way and I am sure with more targeted treatment and advances I will be ok…just so scared. Then there will be hormone treatment medication and hopeful there will be no Chemo. That ONCO test score will be the deciding factor. I am told though with the low grade cancer that I have chances are in my favor for NO Chemo.
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Hi there, @mydogtanner! Welcome to Breastcancer.org. We’re really sorry you have to be here, but we’re glad you found us.
It makes total sense to feel scared, especially with radiation to both breasts and the uncertainty around your Oncotype score. That “what if I’d chosen differently” feeling is very common, but you made the best decision with the information you had, and your low grade cancer with clear nodes is encouraging.
We hope other members who’ve had similar treatment plans will chime in and share their experiences with you. We’re here for you. Please keep us posted. 💝
The Mods
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