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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I just had a lumpectomy 5-3-23. Age 70. ILC, Invasive Lobular Cradinoma, 1.3 cm mass, Estrogen & Projestoren +, HER2-. Nothing found in lymph nodes. I am also, contemplating if I should have radiation. That seems to be the standard protocal, however, I have read studies with women over 65, radiation may not be necessary, but AI would be recommended. I have a second issue, as the cancer is in the left breast, and I also, have a pacemaker in same breast. If I decide on radiation, than I would need another surgery to move the pacemaker to the other side.
I am concerned about damaging the heart as well. I would like to know where you found the information on 3 out of 100 women will have recurrence without radiation. I look forward to hearing back.

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@judydarlene

I just had a lumpectomy 5-3-23. Age 70. ILC, Invasive Lobular Cradinoma, 1.3 cm mass, Estrogen & Projestoren +, HER2-. Nothing found in lymph nodes. I am also, contemplating if I should have radiation. That seems to be the standard protocal, however, I have read studies with women over 65, radiation may not be necessary, but AI would be recommended. I have a second issue, as the cancer is in the left breast, and I also, have a pacemaker in same breast. If I decide on radiation, than I would need another surgery to move the pacemaker to the other side.
I am concerned about damaging the heart as well. I would like to know where you found the information on 3 out of 100 women will have recurrence without radiation. I look forward to hearing back.

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The statistic I was given today at my surgeons office was 40% recurrence without radiation and 7-10 % with radiation usually within the first 2 years after surgery. I am 67 years old. I do not want to have to have another surgery so I am seriously thinking about radiation. My lumpectomy was on the left side directly over my heart. I was told by a radiology technician that there is a technique of holding your breath to expand your lungs during the treatment. This increases the distance between the radiation and the heart. It’s a tough decision along with taking endocrine blockers for 5 years with low grade DCIS.

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Make sure to discuss this thoroughly with your radiation oncologist. I have left breast, pleomorphic lobular, 2.3 cm mass, lumpectomy 4-5, reexcision 4-19. Stage 1B, grade 3. No lymph node involvement. I will have 15 rounds of whole breast radiation and 5 to the tumor bed. .FACE DOWN...to avoid the heart and lungs. I have a very unusual BC and feel so fortunate that it was caught early.

With lymph node involvement, prone positioning isn't an option, but it certainly seems worth asking about. It all depends on your tumor and comfort with risk. What we read on line isn't fine tuned to our tumor or personal health risks. Make sure you explore all the options.

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@judydarlene

I just had a lumpectomy 5-3-23. Age 70. ILC, Invasive Lobular Cradinoma, 1.3 cm mass, Estrogen & Projestoren +, HER2-. Nothing found in lymph nodes. I am also, contemplating if I should have radiation. That seems to be the standard protocal, however, I have read studies with women over 65, radiation may not be necessary, but AI would be recommended. I have a second issue, as the cancer is in the left breast, and I also, have a pacemaker in same breast. If I decide on radiation, than I would need another surgery to move the pacemaker to the other side.
I am concerned about damaging the heart as well. I would like to know where you found the information on 3 out of 100 women will have recurrence without radiation. I look forward to hearing back.

Jump to this post

This is the link to the nomogram/algorithm
https://www.evidencio.com/models/show/2238

You will need to sign in as guest and accept the terms for using it.

I found it quite interesting.

Today I had an appointment with the Proton people and they said they could take care of it however they said that I should consider brachytherapy as it looks like it won't affect my heart/lungs will check on that hopefully next week. The Proton place is 2.5 hours drive from home so it's logistically a bit of a nightmare but convenience aside I want what's absolutely the best for my health.

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Hello
Everyone’s treatment plan is different for their type of breast cancer.
I had a double mastectomy, 25 rounds of radiation, and preventive chemo.
I just completed my reconstruction - fat graph for small b cup.

I am cancer free - a long journey.

My advice is to do what is medically right and not convenient.

I had stage 3 HER 2 positive and wanted to limit my percent chance for reoccurrence - I am recovering as I write this from reconstruction and I am excited to have courageously made it positively through all treatments over the past year!

I will be monitored for the next 5 years.
I am ready to only look forward and continue living without regrets on my decision with my care team.

Focus on your long term health and you are worth driving 2 hours each way!!

Follow what treatment is right for you-we are more courageous than we think

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@frogjumper

This is the link to the nomogram/algorithm
https://www.evidencio.com/models/show/2238

You will need to sign in as guest and accept the terms for using it.

I found it quite interesting.

Today I had an appointment with the Proton people and they said they could take care of it however they said that I should consider brachytherapy as it looks like it won't affect my heart/lungs will check on that hopefully next week. The Proton place is 2.5 hours drive from home so it's logistically a bit of a nightmare but convenience aside I want what's absolutely the best for my health.

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Wow! That’s quite an interesting resource. Thank you. 🌸

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@blessedx6

The statistic I was given today at my surgeons office was 40% recurrence without radiation and 7-10 % with radiation usually within the first 2 years after surgery. I am 67 years old. I do not want to have to have another surgery so I am seriously thinking about radiation. My lumpectomy was on the left side directly over my heart. I was told by a radiology technician that there is a technique of holding your breath to expand your lungs during the treatment. This increases the distance between the radiation and the heart. It’s a tough decision along with taking endocrine blockers for 5 years with low grade DCIS.

Jump to this post

I am 70 and just finished my 15th and final day of radiation at UCSD yesterday. I had a lumpectomy for DCIS with a nuclear grade of 3. My tumor was also over my heart and the breathing technique was used. Other than a rash, I have no issues and I am grateful for all the advanced technology that was available to treat the cancer. I will meet again with the oncologist in 2 months to (once again) discuss taking an estrogen blocker. The jury is still out on that one!

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@pamelafay

I am 70 and just finished my 15th and final day of radiation at UCSD yesterday. I had a lumpectomy for DCIS with a nuclear grade of 3. My tumor was also over my heart and the breathing technique was used. Other than a rash, I have no issues and I am grateful for all the advanced technology that was available to treat the cancer. I will meet again with the oncologist in 2 months to (once again) discuss taking an estrogen blocker. The jury is still out on that one!

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Hi PamelaFay,
Thanks so much for sharing your story. Did you receive your radiation while lying on your back or stomach?

I am glad you finished the treatments without severe side effects. Did you use Aquaphor cream for the rash?

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Had same diagnosis & did radiation -it was disastrous. I feel it may have damaged my heart. My normally low bp is in the dangerously high range now.
Due to what I’m guessing was medical error, I wound up w/ dripping moist desquamation over the entire breast. It was so painful I considered checking out. My onc: “take Advil.”
I don’t want to scare you, but according to Cleveland Clinic & the NIH, 20-30% will have severe effects. The oncs call that “rare.”

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@blessedx6

Hi PamelaFay,
Thanks so much for sharing your story. Did you receive your radiation while lying on your back or stomach?

I am glad you finished the treatments without severe side effects. Did you use Aquaphor cream for the rash?

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I had treatments while lying on my back. I used Mometasone Furoate (prescription cream) twice daily and Aquaphor on the nipple area for extra help. I was told yesterday to continue the cream for another two weeks which I definitely will, as it helps so much with itching and burning discomfort. All in all, it was very tolerable and I am glad I chose to do the radiation.

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