Does radiation after lumpectomy usually include the chest wall?
Hi - I'm confused - I am in a situation where I need to choose whether to stick with a lumpectomy, or just go forward with a mastectomy. They want to give me radiation either way. I want to minimize the dose to lungs and heart (family history). So I'm trying to understand whether radiation is less intensive or more intensive with lumpectomy versus mastectomy.
Does radiation for regular old lumpectomies usually include irradiating the "chest wall" (in addition to the breast tissue)?
Or is chest wall radiation usually just done after mastectomies?,
PS Thanks for any info! I'm trying to get my head around all this. I've found that radiation oncologists either don't care/don't know, or just don't want to tell patients about this stuff...
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Whole breast radiation after lumpectomy includes the chest wall and is standard of care for all except women over 70 with small low grade tumors who commit to taking AIs. Radiation to the chest wall after mastectomy is done when the tumor is large and the patient is younger. There are breathing and prone positioning techniques which are sometimes used if there are concerns about the heart and lungs, but there is no way of eliminating all risk. My RO drew a sketch showing why this is the case.
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Sarahnh, I did a lot of research before I had surgery since I have an underlying medical condition (Barrett's esophagus) that makes radiation more dangerous. Also, having autoimmune conditions like scleroderma and RA can cause adverse reactions. My RO understood my concerns and spent time explaining why any radiation would be more risky for me and what he could do to minimize the risks. I chose lumpectomy since my only alternative was skipping rads altogether. I had opted out of chemo for other medical reasons and decided radiation was the lesser of two evils in my situation.
The actual radiation treatment (whole breast and axilla) went fine. Six months later I did develop late stage grade 3 radiation pneumonitis causing pulmonary fibrosis and resulting low oxygen levels. My RO immediately got me in with a pulmonologist who specializes in interstitial lung disease. I was treated with corticosteroids and supplemental oxygen. The pulmonologist was really good about getting me off of oral steroids which have terrible side effects and onto inhaled steroids which target the lungs as quickly as he could. I had a scary couple of months but I'm doing fine now. There is permanent scarring and atelectasis in my right lung, but the fibrosis stopped progressing and my pulmonary function tests have returned to normal range.
This happens pretty rarely and generally to those with pre-existing conditions. I don't want to scare you off, but all treatments have potential side effects and doctors are used to dealing with them. The worst happened to me but I would do it again since breast cancer can be deadly, too. You had surgery on your right breast so your heart should not be in the radiation field. If there are specific lung conditions you are worried about, ask the RO how radiation might affect them and what your individualized risk might be.
I read all kinds of research papers (my math/chem/physics background was useful here) but this article has a pretty good easy to understand summary: https://www.oncolink.org/cancers/breast/treatments...
Best wishes for making the right decision for you from a fellow granite stater.
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maggie15 Thank you! My background is mathematics (with some physics in there too) and my husband is a physics professor so it look like we have more in common than just the granite state!
Your experience with pneumonitis and pulmonary fibrosis sounds terrifying, and ironically it is exactly what I am worried about.
My father had familial pulmonary fibrosis (no genetic test yet - just defined when two first-degree relatives develop idiopathic pulmonary fibrosis). So I have a 50/50 chance for the gene. If I do have the gene, any lung injury (smoking, radiation therapy) could induce the pulmonary fibrosis prematurely. I worry about that because, for people with the gene, once the pulmonary fibrosis starts, it is invariably fatal.
My doctors (Dana Farber) seem to have never heard of this, and seem unconcerned. My oncologist did send me to a pulmonologist, who didn't know much. To be fair, the inherited form is rare and usually studied by geneticists or oncologists, not pulmonologists. The doctors at DF seem to all defer to the treating specialist, and just follow official NCCN guidelines.
Meanwhile I keep seeing more studies reporting that patients like me (cN1 but ypN0 - pathologic complete response of tumor and nodes) have minimal benefit from nodal or other escalated radiation. But the doctors have this line: "There is no evidence to support omitting it". I am certain the guidelines will change in a year or so. But not soon enough for me!
Meanwhile I haven't even been able to learn which type of radiation (post-lumpectomy or post-mastectomy) has a higher lung dose. Radiation is so unlike chemo, where the risks and benefits are reported in a clear and straightforward way.
I took a quick look at the link you gave - it is helpful! But it says for lumpectomy "the radiation beams are angled so that they skim the chest wall but cover the whole breast," and for mastectomy "the radiation is designed to skim the chest wall". It still seems unclear to me whether the chest wall is intentionally radiated or not, in either case!
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Sarahnh, There are many doctors, including pulmonologists, who are not familiar with pulmonary fibrosis. The genetic IPF you are worried about is eventually fatal even though there are now meds to slow its progression. Since there is no test that can be done you are definitely tempting fate no matter which type of radiation you have since a small area of the lung will be in the portal. Once the PF starts it can stay in the portal, spread throughout the affected lung as mine did, or spread to the other lung as well (about a 20% chance of this occurring from what I read.) You could contact a pulmonologist who specializes in interstitial lung disease. MGH, Beth Israel, and St. Elizabeth's are Boston PF centers of excellence. A link for other centers in the US is
https://www.pulmonaryfibrosis.org/researchers-heal...
My ILD pulmonologist is wonderful, but he freely admitted that there are many unknowns and even though he is an expert in the field he often doesn't have any answers. His job is helping people live longer since he usually can't cure them. With your academic background you will appreciate the story he told me when I initially asked about my prognosis. He said his daughter in fifth grade came home from school one day and told him, "Daddy, math is magic, you can use it to solve all kinds of problems!" I chuckled, and he then said to me, "Math is magic, but medicine is not," a math related version of the "We don't have a crystal ball" answer. He was not surprised at my bad reaction since an upper GI bleed and the Barrett's esophagus in my medical record made it highly probable that I already had occult ILD from chronic microaspiration of acid and pepsin. Going into this I knew cancer could be triggered in my esophagus but didn't know my lungs were at so much risk.
One thing to keep in mind is that many of the treatments for MBC have ILD as a listed side effect. However, even if there is a recurrence, it is often many years down the road. Given your good response to chemo and the dire consequences of IPF being triggered by radiation, you seem to have an argument for deviating from the standard of care, skipping radiation altogether, and (at worst) buying time. It might be worth consulting an ILD specialist but it's probable that s/he won't be able to give you a good answer.
Best wishes for making the right decision for your situation. Keep our state motto in mind (lol!)
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Hi maggie15 - Your post was an excellent sanity check for me, thanks! I've been shocked at how little my doctors seem to know about the inherited ILD risk.
I like your pulmonologist's "Math is magic" story! But I'm sorry about your pulmonary fibrosis.
The radiation oncologists I've seen do not do "shared decisionmaking" with patients. Trying to get basic information was a weeks-long nightmare. My husband had to step in. Finally, the rad onc told him that, in my case, the lumpectomy radiation planned for me DID in fact include chest wall, just like post-mastectomy radiation. Meanwhile, from reading study literature etc, we learned that lumpectomy radiation does NOT usually include chest wall, which is exactly what you said.
So I was going to be given a much more intensive (and lung-intensive) radiation than normal. Exactly my worst fear. So I will likely just go forward with mastectomy. That may buy time to try to appeal for proton radiation, and/or to learn enough to convince myself whether it's worth the risk to omit PMRT altogether. Just don't want to turn the "or" into an "and", in our state motto!
Your pulmonologist sounds great. Can I ask who you see?
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Hi Sarahnh - My pulmonologist is Dr. Robert Hallowell in the Interstitial Lung Disease Program at MGH. There are six other pulmonologists in the program and it is considered a center of excellence by the Pulmonary Fibrosis Foundation.
Appealing for proton radiation is a good idea. Hopefully I'll never have to worry about this again, but that is my planned course of action if I have a local recurrence in the future.
All the best for finishing your treatment with no adverse effects!
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Thanks maggie15 - I looked him up and he seems great, well trained, serious. Maybe my MGH surgeon can get me in to see him or one of his colleagues in the ILD program, before I make decisions about post-mastectomy radiation.
I truly, truly, appreciate the info, and also your thoughts on all this. Gives me a bit of hope!
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I had five weeks of radiation to my right breast after a lumpectomy. I was in the hospital three times soon after and was diagnosed with Pneumonia three times until I was seen by an infectious disease specialist who determined it was not Pneumonia nor were all the different antibiotics (horrible side effects) were not the appropriate treatment. He put me on IV Steroids (arghh) and sent me home on Prednisone (double arghh). He determined it was Pneumonitis and inflammation, not infection and after two CT scans and three Chest xrays that it was radiation fibrosis. I know that they do all they can to prevent damage to the lungs, but in my case, that wasn't the outcome. I wish you all the best with your treatment
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Hi Suzare - It sounds like your radiation pneumonitis struck a bit earlier than mine. I had the same initial diagnosis of pneumonia. An NP prescribed three rounds of antibiotics that did no good and three x-rays which were progressively worse. She eventually ordered a CT scan since my horrendous cough sounded like lung cancer to her. The radiologist found pleural thickening, reticulation, linear scarring, traction bronchiectasis, and consolidation throughout the right lung but neither the NP nor the pulmonologist she consulted knew what the cause was. At least your infectious disease specialist eventually figured it out. I sent a copy of the CT to my RO (at a much larger hospital about 100 mi from my home) because the radiology report said "does not follow anatomical boundaries." The RO knew it was radiation induced pulmonary fibrosis and immediately sent me to a pulmonologist who specializes in interstitial lung disease.
Before radiation I was given all the warnings about possible future side effects, including other cancers, but nobody ever mentioned the PF. My RO did say that if he had been contacted sooner the steroids might have prevented the fibrosis. When I asked why none of the side effect information mentioned this he said that for BC it is very rare (3/1000 for never smokers and 2/100 for smokers.) In my case the steroids have currently stopped the progression but I am monitored in the event it starts up again. I am on inhaled steroids to tamp down the cough (way better than the oral ones) and have to avoid respiratory infections, intubation for anesthesia, and most treatments for MBC should I ever develop it (hopefully not.) After my latest CT scan my pulmonologist told me that my lungs were stable; then he let me know that in 20% of cases RIPF can progress to the other lung and be fatal. I'm happy to be among the other 80%.
I hope your lungs are no longer bothering you and that you are not having to deal with other side effects from treatment.
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Maggie15, I am outraged that your RO said the odds of RP are so low. My RO told me there was a 1-2% chance of pulmonary fibrosis for non-smokers. Of course he didn’t tell me the odds double when the internal mammary nodes are included in the radiotherapy treatment plan (Poortman. EORTC. 2015 NEJM.)
Almost anyone having radiotherapy will show lung changes on CT after treatment, and most cases have no clinical symptoms and resolve on their own. So CT imaging alone may not be a concern. But for those who do have symptoms, prompt treatment with steroids is critical. So sorry yours was not caught earlier. Nor was mine, despite my reporting of symptoms.
Reshma Jagsi of U Michigan has written on radiation therapy and physicians missing patient-reported symptoms, especially in younger and non-white patients.
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ratherbesailing, thank you for the references. My radiation included ALN but not IMN. The pulmonologist I was referred to was not surprised I developed radiation induced pulmonary fibrosis since I have a history of upper GI bleeds, Barrett's esophagus and esophagitis. He said I probably already had subclinical ILD from microaspiration of acid and pepsin due to asymptomatic GERD. My RO knew about the Barrett's and said he would avoid my esophagus but I guess that wasn't enough. Autoimmune diseases like scleroderma, lupus and RA often contradict radiation. My pulmonologist told me there is a very large correlation between ILD and severely inflammatory GERD (about 85%) but no cause-effect relationship has been proved so it's not on the radiation cautionary list.
Most doctors (including some pulmonologists) are not familiar with interstitial lung disease because it is so rare. When I suggested to my RO that the side effect info sheet should stress the consequences of the cough he initially said his office would have to field calls about every cold and allergy, but then agreed it would be worth it to prevent a potentially fatal side effect. I pointed out to him that the cough is very different from others: dry, deep, hacking, occurring in fits lasting several minutes and frequent. People would quickly move away because I sounded like I had the plague (much worse than a COVID cough.) This is something that could be screened for by a few questions.
I hope your PF is stable and not causing cough or SOB.
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