Low risk IDC: Using data (POLAR assay) to decide on radiation or not

Posted by robbihm @robbihm, Mar 27 6:50pm

Hello wonderful community,
All surgeries behind me now and weighing risks of radiation therapy or not. I've just become aware of new studies and testing that can be done to assess local/regional recurrence risk that may indicate radiation does not really add any more protection from recurrence.

Have any of you had this testing? Anyone choose to forego radiation with low risk - IDC, Stage 1, Grade 1, Oncotype 15, 6mm tumor removed with wide clean margins, no nodes...?
Thank you!!

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Your cancer was grade one so wondering if your estrogen score is on the low side, or the progesterone score, to account for the Oncotype not being lower (not that it is high). Is your estrogen score high enough that you feel you can do anti-hormone treatment alone? Your tumor was pretty tiny! I hope others who had lumpectomy with low grade tumors chime in. I had mastectomies to avoid radiation but mine was grade 3 and bigger. That test looks interesting. I hope you can have it! These decisions are so hard.

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@windyshores

Your cancer was grade one so wondering if your estrogen score is on the low side, or the progesterone score, to account for the Oncotype not being lower (not that it is high). Is your estrogen score high enough that you feel you can do anti-hormone treatment alone? Your tumor was pretty tiny! I hope others who had lumpectomy with low grade tumors chime in. I had mastectomies to avoid radiation but mine was grade 3 and bigger. That test looks interesting. I hope you can have it! These decisions are so hard.

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First, thank you for responding. It is so hard to decide and you are kind of on your own todo anything out of the norm. I have very high ER/PR positive scores - 80-90%. I was wondering about only doing the AIs. My treatment team recommends - 5 days radiation (likely full breast as I had reduction surgery a week after my lumpectomy) and then 5 years AI. I was hoping my oncotype would be lower / some scales consider a 15 on the borderline of medium risk.

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I have written this before, but in your case, I think it's worth repeating. At age 70 in 2020 my breast cancer diagnosis was very similar to yours. I had IDC. The tumor was also 6mm, 95% ER+ and 95% PR+, Grade 1 with no lymph nodes involved. They did not do an oncotype because they said the tumor had been entirely removed during the biopsy. I'm not sure that I buy that, but that's another story. After a lumpectomy, I had clean margins.
The radiation oncologist recommended that I have 16 rounds of radiation. He informed me that there are studies that indicate that radiation after the age of 70 may not be necessary or beneficial. However, he knew of patients who were older than I, had decided against radiation, and had a recurrence. I decided to have the radiation. I was fortunate because I did not have any known side effects from it. It was the easiest part of my treatment. I was then prescribed anastrozole. I had no family history of breast cancer, nor had I been through it with any friends, so I was very unfamiliar with the treatment options. I thought that the little white pill couldn't be too bad. After all, women stay on it for 5 to 10 years. At the only cancer center in my area, patients are required to attend a session with a nurse who explains the possible side effects of the medicine. I was also required to sign a contract which stated that I understood the possible side effects. That should have given me a clue.
I had MANY side effects from anastrozole which severely diminished my quality of life. After 3 months, I stopped taking it. I am definitely not saying that you shouldn't try it. Many patients take it with minor or no side effects. The reason I am repeating my thoughts is to caution anyone deciding whether or not to have radiation. That decision is made before we know, if our bodies will be able to tolerate an aromatase inhibitor. I was glad that I had decided to have the radiation to give myself the protection that it might provide. None of the treatments give us a 0% chance of recurrence. We each must decide for ourselves what treatments we choose based on our pathology, age, quality of life while on medication and many other individual factors. I am soon to be 74, feeling well and enjoying a good quality of life.
I wish you and all who read this blog the best of luck with your decisions and many healthy years ahead.

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Thank you so much for sharing (re-sharing your experiences). I am most nervous about the AIs for sure. I talk to the radiologist this afternoon and just want to be sure that anything toxic that I expose my body to is actually worth it enough on the prevention side.

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Yes the suggestion that chemo might be helpful starts at Oncotype score 16. I didn't want to emphasize that! If your estrogen and progesterone scores are high, that is good news for your possible response to meds and consequent reduction in risk. But that also leaves me wondering why your Oncotype was 15. And yours was grade 1. I called the company and talked to someone there who explained my score (low despite high grade and LVI). I don't know if Exact Sciences does that anymore: at the time it was Genomic Health. But worth a try.

Maybe you will feel better getting a second opinion. I got 4 🙂

I had an Oncotype done on biopsy tissue. They should be able to do that. Ridiculous.

If your cancer is on the right side, it might be better than on the left for radiation due to the heart being on the left. That is what I was told.

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@bloncape

I have written this before, but in your case, I think it's worth repeating. At age 70 in 2020 my breast cancer diagnosis was very similar to yours. I had IDC. The tumor was also 6mm, 95% ER+ and 95% PR+, Grade 1 with no lymph nodes involved. They did not do an oncotype because they said the tumor had been entirely removed during the biopsy. I'm not sure that I buy that, but that's another story. After a lumpectomy, I had clean margins.
The radiation oncologist recommended that I have 16 rounds of radiation. He informed me that there are studies that indicate that radiation after the age of 70 may not be necessary or beneficial. However, he knew of patients who were older than I, had decided against radiation, and had a recurrence. I decided to have the radiation. I was fortunate because I did not have any known side effects from it. It was the easiest part of my treatment. I was then prescribed anastrozole. I had no family history of breast cancer, nor had I been through it with any friends, so I was very unfamiliar with the treatment options. I thought that the little white pill couldn't be too bad. After all, women stay on it for 5 to 10 years. At the only cancer center in my area, patients are required to attend a session with a nurse who explains the possible side effects of the medicine. I was also required to sign a contract which stated that I understood the possible side effects. That should have given me a clue.
I had MANY side effects from anastrozole which severely diminished my quality of life. After 3 months, I stopped taking it. I am definitely not saying that you shouldn't try it. Many patients take it with minor or no side effects. The reason I am repeating my thoughts is to caution anyone deciding whether or not to have radiation. That decision is made before we know, if our bodies will be able to tolerate an aromatase inhibitor. I was glad that I had decided to have the radiation to give myself the protection that it might provide. None of the treatments give us a 0% chance of recurrence. We each must decide for ourselves what treatments we choose based on our pathology, age, quality of life while on medication and many other individual factors. I am soon to be 74, feeling well and enjoying a good quality of life.
I wish you and all who read this blog the best of luck with your decisions and many healthy years ahead.

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My story and age same as yours. I chose radiation
(5 days ) and I started the Anastrozole. But after about 8 weeks I decided to stop it due to the side effects including weight gain…did not want to repeat menopause. Feel like I’m not finished with the side effects from the AI even though I stopped it 6 months ago. Hoping the XRT provides some protection, I think the odds are with us I just want to spend the next few years of my life comfortable and not feeling sick half the time from the AIs.

REPLY
@windyshores

Yes the suggestion that chemo might be helpful starts at Oncotype score 16. I didn't want to emphasize that! If your estrogen and progesterone scores are high, that is good news for your possible response to meds and consequent reduction in risk. But that also leaves me wondering why your Oncotype was 15. And yours was grade 1. I called the company and talked to someone there who explained my score (low despite high grade and LVI). I don't know if Exact Sciences does that anymore: at the time it was Genomic Health. But worth a try.

Maybe you will feel better getting a second opinion. I got 4 🙂

I had an Oncotype done on biopsy tissue. They should be able to do that. Ridiculous.

If your cancer is on the right side, it might be better than on the left for radiation due to the heart being on the left. That is what I was told.

Jump to this post

Met with my oncologist this week who is 100% that I am not a candidate for chemo. Your recommendation of a second opinion is a good one even with a stellar treatment team at Fred Hutchinson Cancer Research Center in Seattle.

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@robbihm

Met with my oncologist this week who is 100% that I am not a candidate for chemo. Your recommendation of a second opinion is a good one even with a stellar treatment team at Fred Hutchinson Cancer Research Center in Seattle.

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Regarding the comment about going through menopause a second time. I can only describe my own experience but over weeks and months the symptoms of this second menopause eased up. I think things like hot flashes especially eased up. So I kind of stuck with it though I respect those who don't. @robbihm Hutchinson is the best, I gather!

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@jlgc

My story and age same as yours. I chose radiation
(5 days ) and I started the Anastrozole. But after about 8 weeks I decided to stop it due to the side effects including weight gain…did not want to repeat menopause. Feel like I’m not finished with the side effects from the AI even though I stopped it 6 months ago. Hoping the XRT provides some protection, I think the odds are with us I just want to spend the next few years of my life comfortable and not feeling sick half the time from the AIs.

Jump to this post

No one knows how many years we have left to live. At age 74, my quality of life will probably be best during the next 5 years, barring a recurrence. According to my oncologist, my chance is very low for metastasis and 12% for recurrence in the same or other breast without taking an aromatase inhibitor. Like you, I’m not willing to give up my good years and feel as awful as I did on anastrozole to reduce my chances by 5 or 6%. Doctors say that the side effects can be managed with more meds. To me, that’s a downward spiral. More meds often mean more side effects. I was advised to try exemestane, but I declined.
I know that I am fortunate to have a relatively low chance of recurrence. I might have made a different decision had my chance of recurrence been higher. These decisions are not easy to make, but we must all do what we feel is best for us.
I wish you best of luck and many more quality years ahead.

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Thank you for responding to my message. I agree completely- there is no right or wrong decision. My risks are also very low. I’ll try it out given that I am 58 and I do hope to be around to see and be part of grandchildren’s lives and enjoy some retirement after many years of work starting at age 16. (I hope to retire at 62). Here in the Seattle area, Dr. Dsis is working on a vaccine - one that will be preventative for all women for initial BC, but also recurrence. The advances coming are amazing.
Keep enjoying your wonderful life!

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