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Deciding on radiation or not

Posted by frogjumper @frogjumper, May 17, 2023

So, I have been going back and forth about radiation now for awhile. I am trying to pursue Proton Beam which seems safe enough considering my tumor bed is directly over my heart. So for me I know I wont' do regular radiation. But this is what perplexes me and makes my decision difficult. Basically 3 out of 100 women like me will have a recurrence without radiation, with radiation 2 out of 100 will have a recurrence. I read that and think...is radiation worth it? bearing in my mind my tumor was low grade, tiny and no lymph nodes, clear margins and very well behaving, it actually decreased in size over 6 months prior to surgery.
Is it time to just walk away from treatment and enjoy my good fortune?
I'd appreciate any input.

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jessicanell | @jessicanell | Oct 29, 2023

I had a small 1A IDC no nodes positive. They said bc of my “young age” 52 radiation was recommended. If I was 65 or older no radiation. It cuts the recurrence of the cancer by 2/3 so I did it. It was unpleasant but fine. 15 days.

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anjalima | @anjalima | Oct 29, 2023
In reply to @meomurian "Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to..." + (show)
Profile picture for meomurian @meomurian

Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to take anastrozole for 5 years. I'm willing to do that if it will help keep the cancer from coming back again.

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Great news!!!! I was similarly lucky with a favorable ONCOTYPE analysis. On Anastrozole for 18 mos. So far so good … with a two mos. Heavy side effect blip when pharmacy changed manufacturer… back to original manufacturer and all good.

Be aware of manufacturer and check each time you fill your script. I appear to have been sensitive to that change.

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maryanne7 | @maryanne7 | Oct 28, 2023

Ask for doctor is "Is there is significant difference?" This is not a casual reference. This is a statistical measurement based on the actual cases that that researchers have studied. I would also decide based on how risky or onerous the treatment is. My radiation was not that bad. Plus, my radiation oncologist made an interesting remark regarding re-occurrence that I had to run by my medical oncologist. The radiation oncologist tells you about the re-occurence of that particular tumor; the medicine oncologist tells you about re-occurence of breast cancer in general. Good luck.

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Joanna | @enaska1 | Oct 28, 2023
In reply to @meomurian "Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to..." + (show)
Profile picture for meomurian @meomurian

Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to take anastrozole for 5 years. I'm willing to do that if it will help keep the cancer from coming back again.

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@meomurian I AM SO HAPPY FOR YOU ! ❤️❤️❤️

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cobb | @cobb | Oct 27, 2023
In reply to @baylaurel "Hi Cobb, I am also getting proton therapy in San Diego for left side breast cancer..." + (show)
Profile picture for baylaurel @baylaurel

Hi Cobb, I am also getting proton therapy in San Diego for left side breast cancer but have radiation dermatitis bad enough to need a short break from radiation. Is is too late for me to use Mepitel film? Only using steroid cream plus Calendula and Aquaphor but it is not helping my very fair and old skin.

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Another thought is to join the Mepitel FB group and ask the question!

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meomurian | @meomurian | Oct 27, 2023
In reply to @enaska1 "THANK you for taking time and providing this info . I wish cancer would NOT come..." + (show)
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THANK you for taking time and providing this info . I wish cancer would NOT come back! My thoughts and prayers to you ! Hope you don't need chemo ! 💕🙏🏻

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Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to take anastrozole for 5 years. I'm willing to do that if it will help keep the cancer from coming back again.

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cobb | @cobb | Oct 27, 2023
In reply to @baylaurel "Hi Cobb, I am also getting proton therapy in San Diego for left side breast cancer..." + (show)
Profile picture for baylaurel @baylaurel

Hi Cobb, I am also getting proton therapy in San Diego for left side breast cancer but have radiation dermatitis bad enough to need a short break from radiation. Is is too late for me to use Mepitel film? Only using steroid cream plus Calendula and Aquaphor but it is not helping my very fair and old skin.

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I don’t know. Have you asked your doc at Proton? If they say yes, I can bring some to Proton for you. I only have partial breast radiation and the film size is 4 x 4.8 inches and one dressing covers my area so I will have leftover film. Let me know area size so I know how many to bring. My name is Lynn and I will have my last treatment next Friday. PS- my skin is old and fair too!!

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Joanna | @enaska1 | Oct 27, 2023
In reply to @meomurian "I was diagnosed with DCIS and had a lumpectomy 12 years ago followed by radiation. My..." + (show)
Profile picture for meomurian @meomurian

I was diagnosed with DCIS and had a lumpectomy 12 years ago followed by radiation. My tumor was practically on top of the chest wall and very close to my heart, so they had me in a special room at MD Anderson where you wear goggles during the radiation and they ask you to take a deep breath at different intervals and hold it until you can see the yellow line in your vision move to the top and turn green. That tells them to do something that actually moves your heart out of the way while they radiate. Amazing! They told me with radiation, if the cancer ever came back, I would not be able to have radiation. I couldn't imagine the cancer recurring, so I went ahead and had the radiation. It wasn't a bad experience at all. I was a little more tired than normal but no pain or discomfort at all. Having to get up extra early for my 7 am appointment every day for 6 weeks contributed more to my tiredness than the radiation itself.
The radiation effect lasted for 12 years and this year I was diagnosed with IDC in the same area of the left breast and was told my only option was a full mastectomy, which I had a month ago. The path report showed clean margins all around and no cancer in the lymph nodes they removed. I find out tomorrow the results of my oncotype testing which will help the doctor make a decision on whether or not I will need chemotherapy in addition to taking an aromatase inhibitor.

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THANK you for taking time and providing this info . I wish cancer would NOT come back! My thoughts and prayers to you ! Hope you don't need chemo ! 💕🙏🏻

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baylaurel | @baylaurel | Oct 27, 2023
In reply to @cobb "Yes it is being done for breast cancer!!! Cuts your recurrence risk down, so much easier..." + (show)
Profile picture for cobb @cobb

Yes it is being done for breast cancer!!! Cuts your recurrence risk down, so much easier than AI. My proton radiation oncologist in San Diego is awesome. Much lower risk of side effects and I am using Mepitel Film to reduce risk further. Make an appointment, find out the facts and then make your decision. Best of luck to you.

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Hi Cobb, I am also getting proton therapy in San Diego for left side breast cancer but have radiation dermatitis bad enough to need a short break from radiation. Is is too late for me to use Mepitel film? Only using steroid cream plus Calendula and Aquaphor but it is not helping my very fair and old skin.

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2 replies
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splendrous | @splendrous | Oct 27, 2023
In reply to @semurrey "Hi! Just weighing in with some feedback from MGH Boston as I met with proton beam..." + (show)
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Hi! Just weighing in with some feedback from MGH Boston as I met with proton beam team for second opinion as Dana Farber doesn't offer proton beam. At 57 yrs, ILC on right side (margins weren't great). Proton Beam was not recommended for my breast - biomarkers, etc all examined. I went with whole breast radiation (small breasts) -19 treatments with boost. I was so convinced proton beam was way to go but I will say the proton beam team was great at explaining why/how proton beam is not always the safest or best treatment. xoxoxo Good luck and I love this group!

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Thanks for posting. I would be interested in any of the points you could share as to when proton beam is appropriate. Seems like you were fortunate to have a good team at MGH Boston to explain proton beam.

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