1. < Breast Cancer

Radiation/fibrosis ick, anything at ALL I can do to prevent/reduce it?

Posted by diamonddog @diamonddog, Jul 6 5:59am

I am post lumpectomy after removing 1.8cm tumor, right side, IDC, stage 1/grade 2, ER+/PR-/HER2- , oncotype 32 but no node involvement and clean margins. No BRCA. 7 o'clock, very close to the body.

Naturally radiation is the standard of care. But I have lung scarring and also a fear of rib damage, and so I'm losing sleep. I have inquired about prone position radiation, but the doctor tells me that won't work well because of the tumor's (ex) location. I've also been told about partial-breast, but that comes with the warning that I'd be advised to take 10 years of AIs rather than a shorter course.

So I'm bracing myself for full-breast radiation and am worried about lymphedema and fibrosis. Even just the removal of the sentinel node gave me lymphedema, so I'm imagining the worst with radiation.

Is there any resource that could tell me how I can avoid the worst side effects in terms of fibrosis and lymphedema during radiation? Is there any avoiding it, or is there anything I can do before, during, or after that will minimize it?

For example, is it a "thing" to ask my radiologist to give me the minimum effective dose of rads to avoid the worst side effects? Or is that insulting (or worse, dumb). Any new strategies or resources to avoid this fate?

Thanks everybody.

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Zebra | @californiazebra | Jul 6 11:13am

Hi @diamonddog
Are you saying you already have lung scarring before radiation?

I had 37 radiation treatments including 9 boost over an 8” x 12” area on right chest and side after breast cancer recurred in my chest wall and pectoral muscle so likely deeper radiation than you’ll have after a lumpectomy. I had similar concerns about my lung especially since I already had neuroendocrine lung cancer with respiratory symptoms. They told me the new equipment is so specific that the radiation wouldn’t go deeper than needed. CT scans show I have a thin layer of fibrosis over my right lung from the radiation but that hasn’t caused any additional respiratory issues for me in 4.5 years. In fact, no long term issues that I’m aware of. Didn’t damage ribs. The skin darkness it causes faded away in a few months.

I had some lymphedema issues after my mastectomy years earlier and after the tumor resection from my chest wall but I do not recall the radiation making it worse. I had PT because of the surgery both times.

The only precaution I can think of is to inquire about the radiation equipment itself and go to whichever facility has the most state-of-the-art equipment to control the depth of the radiation so it doesn’t go beyond the necessary target.

Be sure to use the suggested creams twice a day from the start. I used calendula from Amazon and then silvadene closer to the end. My skin was just pink for about the first 20 treatments then it started to break but I really had a lot of radiation not only due to recurrence but also a positive margin. You’ll likely have less. The daily treatments themselves are easy, quick and painless.

Prayers for your peace and the best outcome.

REPLY
1 reply
diamonddog | @diamonddog | Jul 7 9:56am
In reply to @californiazebra "Hi @diamonddog Are you saying you already have lung scarring before radiation? I had 37 radiation..." + (show)
@californiazebra

Hi @diamonddog
Are you saying you already have lung scarring before radiation?

I had 37 radiation treatments including 9 boost over an 8” x 12” area on right chest and side after breast cancer recurred in my chest wall and pectoral muscle so likely deeper radiation than you’ll have after a lumpectomy. I had similar concerns about my lung especially since I already had neuroendocrine lung cancer with respiratory symptoms. They told me the new equipment is so specific that the radiation wouldn’t go deeper than needed. CT scans show I have a thin layer of fibrosis over my right lung from the radiation but that hasn’t caused any additional respiratory issues for me in 4.5 years. In fact, no long term issues that I’m aware of. Didn’t damage ribs. The skin darkness it causes faded away in a few months.

I had some lymphedema issues after my mastectomy years earlier and after the tumor resection from my chest wall but I do not recall the radiation making it worse. I had PT because of the surgery both times.

The only precaution I can think of is to inquire about the radiation equipment itself and go to whichever facility has the most state-of-the-art equipment to control the depth of the radiation so it doesn’t go beyond the necessary target.

Be sure to use the suggested creams twice a day from the start. I used calendula from Amazon and then silvadene closer to the end. My skin was just pink for about the first 20 treatments then it started to break but I really had a lot of radiation not only due to recurrence but also a positive margin. You’ll likely have less. The daily treatments themselves are easy, quick and painless.

Prayers for your peace and the best outcome.

Jump to this post

Thank you so much. Yes, my lungs are a tiny bit wonky from calcified granulomas - noted in my early 20s when I was being scanned all over for government service. I haven't noted any ill effects but it did give me pause at the time because I had no idea what might have happened when I was a child to develop that. I appreciate all of this!!!

REPLY
1 reply
Zebra | @californiazebra | Jul 7 12:15pm
In reply to @diamonddog "Thank you so much. Yes, my lungs are a tiny bit wonky from calcified granulomas -..." + (show)
@diamonddog

Thank you so much. Yes, my lungs are a tiny bit wonky from calcified granulomas - noted in my early 20s when I was being scanned all over for government service. I haven't noted any ill effects but it did give me pause at the time because I had no idea what might have happened when I was a child to develop that. I appreciate all of this!!!

Jump to this post

@diamonddog
Do you have any respiratory symptoms from the granulomas? Are they slowly growing by any chance?

I have over 50 lung nodules that were discovered on a CT in 2008. I had an unexplained chronic cough every hour of the day since about 1990. It took 12 years to diagnose the nodules with so many specialists of all kinds baffled. Many of them guessed they were residual from a past infection. That never made sense to me since they were very very slowly growing. Turns out I have a super rare condition called DIPNECH. Only about 300 documented cases in the world but they believe it is underdiagnosed because doctors aren’t familiar with it. It’s called DIPNECH. Google it just in case. I’ve been taking octreotide injections for 4 years and they stopped my cough. Life changing!

REPLY
1 reply
diamonddog | @diamonddog | Jul 7 4:10pm
In reply to @californiazebra "@diamonddog Do you have any respiratory symptoms from the granulomas? Are they slowly growing by any..." + (show)
@californiazebra

@diamonddog
Do you have any respiratory symptoms from the granulomas? Are they slowly growing by any chance?

I have over 50 lung nodules that were discovered on a CT in 2008. I had an unexplained chronic cough every hour of the day since about 1990. It took 12 years to diagnose the nodules with so many specialists of all kinds baffled. Many of them guessed they were residual from a past infection. That never made sense to me since they were very very slowly growing. Turns out I have a super rare condition called DIPNECH. Only about 300 documented cases in the world but they believe it is underdiagnosed because doctors aren’t familiar with it. It’s called DIPNECH. Google it just in case. I’ve been taking octreotide injections for 4 years and they stopped my cough. Life changing!

Jump to this post

Thank you zebra!! I will check that out. I don't have any coughing, but don't know about the slow growth. I just had a CT scan and am awaiting a meeting with the RO to discuss, so I guess more will be revealed soon. Take care of yourself.

REPLY
delfinogn | @delfinogn | Jul 8 9:58am

I don’t know where you live or your insurance situation, but if you can see a radiologist who also has access to proton beam radiation, that might be a safer choice. I was supposed to do this at Mayo in Rochester MN, but my insurance denied it after multiple appeals. A bit stressful, but I stayed at the Hope Lodge in town there, and there were other patients on other insurance who were approved. The beam is more focused and has an end point as I understand, so less exposure to organ not meant to be treated.

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