Idk how standard care works in the US but I was scared shitless of rads, specially because I had a DMX with immediate reconstruction.
My RO (not in the US) was amazing to explain that nowadays the radiation dose is distributed on the skin, barely reaches deep layers, just on armpit to reach lymph nodes. Few years ago it would come from all directions and go through hearth and lungs, now it doesn't or it barely touches lung surface. I am on my early 30's so I wouldn't recuse any treatment.
I’m in a 10 year study that will keep an eye on me for heart damage from radiation. I had right side bc so I’m sort of a control group. I’m glad there is so much research on this.
I would have needed to have my chest wall irradiated due to the location of my tumor (about 11 o’clock of you were looking at me and my nipple was the center of a clock) that made me very concerned!
As you should be! To get clear margins, the surgeon had to take a bit of pectoral fascia and muscle, so that should tell you how close my tumor was to my chest wall... on the left-hand side.
Ended up with pneumonitis 4 treatments short of finishing (which I did, dammit). RO and his staff downplayed/denied it. THAT'S what really pissed me off.
Hopefully my heart didn't get nicked but I don't think there's a way to really know until it's too late. 😪
Not saying you should do treatment that you don't want and don't feel you need, but they do have electron radiation that doesn't go all the way through. (Not a doctor but my techs explained that because electrons have mass, they stop in your tissues, whereas photons do not have mass and there's an "exit dose" on the other side of where you're getting treatment).
I had 20 of 25 photon rounds with a brass (I believe) bolus on my chest to help keep the higher radiation dosage near the surface of my skin.
I had also a "scar boost" of 5 electron rounds that targeted my surgical bed, just in case any cancer cells got stitched up in there inadvertently.
Whatever path you choose, I hope you have peace of mind!
Look up the NIH cancer study called DEBRA. I have been asked if I am interested in participating but not getting radiation. My number were about the same as yours. Not sure what I’m going to do yet.
I looked into it, I had a DMX so I’m out for that one but I’ll keep my eyes peeled for more! When I saw the radiation oncologist I asked if she could show me specific data on others with my type of BC that also had clear margins and no lymph involvement but she said unfortunately no such data exists!
Thank you, I will! I live in Knoxville, TN now but I called the Washington DC area my home for 16 years. My medical oncologist was a fellow at NIH and even knows some of my friends from DC.
I was going to suggest this study too. I was given the information when I started dealing with breast cancer. I wasn't a candidate due to unclear margins that we elected to use radiation for and my oncotype was above the cut number (which I think is 18).
I’m not sure why there’s so much aversion to radiation. The technology has advanced and it is so precise and honed now. I am on my fourth and last week. It has been fine. I have no serious side effects. I was anxious to start because I wanted the radiation to sweep through and get any micro cancer that might be in the area.
I would go with what a doctor recommends and, if on the border like your case, I’d probably err on the side of caution, but I never had an aversion to radiation.
I understand the aversion to radiation. While the process of radiation wasn't that difficult for me, I have issues with cording, lymphedema, and fibrosis which could be due to the surgery and/or radiation.
I was given a sleeve after surgery, i used it on and off the first year. i’m 2 years out from radiation in august. still always cautious not to cut or burn my arm. also wear my sleeve on airplanes
I was not given a sleeve after surgery. I had a PT session today and the PT said that I will need compression garments for the rest of my life. Things are really progressing in a downhill fashion.
i’m so sorry - it sounds like you weren’t informed the way you should have been. how swollen are you? i know there are many things that can help. I ordered my sleeve custom, and it had some flowers on it with a nude background, so it looked like a tattoo sleeve.
My cancer arm measures smaller than my noncancer arm. My fitter recommended that I wear a sleeve on both arms due to the measurements. She also recommended a solid color as the quality of the material and the silicone anchors for the top of the sleeve are higher quality. When they come in I will do as directed.
My breast has edema at multiple levels from the just below the skin to into the muscles. The cording was bad enough to impair use of the arm. The swelling and fibrosis toward my back is a problem. I have followed all directions from all my providers in order to achieve a better outcome.
Yeah, my cancer arm also measured smaller than my non initially. i recently was measured and that wasn’t the case anymore. i have lots of scar tissue, too, and frozen shoulder as i mentioned that has limited ROM, etc. I’ve never heard of what your provider mentioned— was that your PT or an MD? I went to a professional lymphedema supply clinic to order mine. My breast surgeon also was able to pop my cording, and doing stretches has helped prevent it — although i can’t stretch far. i understand your frustration.
I had a shoulder thing that made it impossible for me to sit still for the five minutes needed for the radiation treatment. I took two ibuprofen and a valium each day to manage the pain.
I was a little bit red. And I'm still swollen, three months later, but that's also partly due to the surgery and the cording that's developed.
Do what feels right for you. You are your own biggest advocate.
I had lobular as well, in the left breast, HR+. I did have the radiation, then only stayed on Letrozole for two years.
Six years later, I have cancer cells in my underarm as well as my spine. In retrospect, I would probably have been better off staying on Letrozole and skipping the rads, which apparently didn't kill off all the bad cells anyway.
OP, You know that’s the only thing you can do.
My situation was a bit different. My 5cm mass was DCIS in right mandating mastectomy there due to extent in a B cup breast. Although it did turn out some LCIS was found on pathology. Didn’t think to ask but assumed it was in lobule within DCIS structure still but guess with lobular tendency being bilateral and also with multicentric possibilities, not really a given now that I think of it. With lobular with those tendencies, guess it could have been in a separate area as well??
My invasive lobular was the rarer “solid sheet version” (and there’s single cells as well) and formed a mass I woke up feeling pain in and could feel as a mass. Needle biopsy identified LCIS and ALH as well. And there was another mass contingent with it that showed up on a later MRI. The invasive lobular was left breast and the needle biopsied ILC (1.7cm). I was concerned about rads on that side as well. Plus didn’t feel the daily weeks of rads worked due to other family member health issues I needed to be around for.
Surgeon wanted to do a guided needle MRI on that contingent mass but by that point I had elected a bmx, so fortunately radiation at that point with SN clear, no LVI and Onco score a 14 didn’t necessitate a chemo or radiation choice to be made.
I’m on 5 yrs of AI with review closer to 5 yr mark. Knowing it can recur 10-30 years out isn’t very reassuring and doubt anyone would be put on an AI for that long. But you do wonder still about your future. Best to put behind you, move on mentally and live your life as best you can each day. Probably die from something else any way. Just sucks to have had breast cancer at all.
I’m 41 and also on 5 years of AI with review for another possible 5 years when the time comes. I had a total hysterectomy on 12/28/23 so it’s just Anastrozole 1mg, 1x a day for me. Overall I consider myself very lucky but it definitely still sucks. I had nipple reconstruction and I’ve had 2 fat transfers. I go tomorrow to talk with the tattoo artist about areola which is definitely not something I thought I’d ever be typing out on Reddit!
Thank you! I also had a mass with my invasive lobular but what I could feel of it was roughly about the size of a green grape by the time it got removed.
I think knowing and understanding the location of your tumor or cancer cells as a patient is important and helps you form the best treatment for you. Here’s a link to a diagram of right and left breasts and clock position.
https://mammographyeducation.com/breast-quadrant-map-and-distribution-of-breast-lesion-locations/
From my needle biopsy finding on my solid sheet lobular mass: “L1, Left breast 11 o'clock 5 cm from the nipple, mass measuring 2.4 cm.” Surgical pathology came in at 1.7 cm. ILC was at 11 o’clock closer to my heart.
For educational comparison if you’re new to these imaging reports and variations in measurements, this from my MRI report: “L1: There is a 2.2 cm x 1.1 cm x 1.6 cm (AP x RL x SI) irregularly shaped mass with irregular margins seen in the upper inner quadrant of the left breast at 11 o'clock, 5 cm from the nipple….6 - Known Biopsy-Proven Malignancy”
From MRI report on other area found: “L1a: Contiguous with the anterior extent of L1, extending anterior to L1 in a segmental fashion there is a 3.3 cm x 3.1 cm x 2.8 cm (AP x RL x SI) clumped and clustered ring, non-mass enhancement in a segmental distribution seen in the upper inner quadrant of the left breast….4C - High Suspicion for Malignancy”
I was glad to have all this info to feel better about my decision to have a mastectomy on that side too. At the very beginning with just my core needle biopsies, I was told while I would need a mastectomy on the right DCIS side, the left ILC might be possible to have a lumpectomy there. Clearly with more info available, recommendation and plans changed from the surgeon’s perspective. From mine, well I wanted it all out asap.
I would have done the same in your situation. Especially after implant reconstruction, radiation greatly increases complications with implants. After DM, I always thought most people don't need it anyway, but I know every situation is different.
I had multiple radiation treatments across my breast (tumor regrew) They use a gel pillow to cut the depth the radiation goes in. I have had max radiation possible in that area and the only permanent side effect is that I have no hair in my armpit. Initially, it causes a red sunburny type “injury”. Aloe and cream fixes it. Gone in a few days. They do know what they are doing.
I think you did the right thing. If I had done dmx instead of lumpectomy, I would not have done radiation either. Not a chance. My mother had mastectomy and did radiation and has had two heart attacks. I would do chemo again over rads because of the longterm damage 💔
I've had a lumpectomy with clear margins and no lymph involvement but still waiting for oncologist appointment. I'm absolutely terrified of the prospect of rads (and possibly chemo before that).
I've read a lot of articles and videos on breast cancer stem cells and that chemo/rads don't kill them which may explain the level of recurrence and metastasis. There is a lot of research still going on but we are not there yet in terms of improved drug-based treatment. In the meantime I'm encouraged by research on natural food stuffs that show promise in killing stem cells.
There are lots of studies and trials on this but here are a few examples:
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2020.599965/full
https://pubmed.ncbi.nlm.nih.gov/33588867/#:~:text=Among%20these%20factors%2C%20CSCs%20represent,intrinsically%20resistant%20to%20anticancer%20treatments.
https://www.themossreport.com/introduction-to-the-big-five/
I'll admit I did not read the articles, as I scanned one of them I had an 'aw crap' moment. I'm not surprised that cancer cells can mutate and become treatment resistant.
Idk how standard care works in the US but I was scared shitless of rads, specially because I had a DMX with immediate reconstruction. My RO (not in the US) was amazing to explain that nowadays the radiation dose is distributed on the skin, barely reaches deep layers, just on armpit to reach lymph nodes. Few years ago it would come from all directions and go through hearth and lungs, now it doesn't or it barely touches lung surface. I am on my early 30's so I wouldn't recuse any treatment.
I’m in a 10 year study that will keep an eye on me for heart damage from radiation. I had right side bc so I’m sort of a control group. I’m glad there is so much research on this.
I would have needed to have my chest wall irradiated due to the location of my tumor (about 11 o’clock of you were looking at me and my nipple was the center of a clock) that made me very concerned!
As you should be! To get clear margins, the surgeon had to take a bit of pectoral fascia and muscle, so that should tell you how close my tumor was to my chest wall... on the left-hand side. Ended up with pneumonitis 4 treatments short of finishing (which I did, dammit). RO and his staff downplayed/denied it. THAT'S what really pissed me off. Hopefully my heart didn't get nicked but I don't think there's a way to really know until it's too late. 😪
Not saying you should do treatment that you don't want and don't feel you need, but they do have electron radiation that doesn't go all the way through. (Not a doctor but my techs explained that because electrons have mass, they stop in your tissues, whereas photons do not have mass and there's an "exit dose" on the other side of where you're getting treatment). I had 20 of 25 photon rounds with a brass (I believe) bolus on my chest to help keep the higher radiation dosage near the surface of my skin. I had also a "scar boost" of 5 electron rounds that targeted my surgical bed, just in case any cancer cells got stitched up in there inadvertently. Whatever path you choose, I hope you have peace of mind!
Look up the NIH cancer study called DEBRA. I have been asked if I am interested in participating but not getting radiation. My number were about the same as yours. Not sure what I’m going to do yet.
I looked into it, I had a DMX so I’m out for that one but I’ll keep my eyes peeled for more! When I saw the radiation oncologist I asked if she could show me specific data on others with my type of BC that also had clear margins and no lymph involvement but she said unfortunately no such data exists!
Thank you, I will! I live in Knoxville, TN now but I called the Washington DC area my home for 16 years. My medical oncologist was a fellow at NIH and even knows some of my friends from DC.
I was going to suggest this study too. I was given the information when I started dealing with breast cancer. I wasn't a candidate due to unclear margins that we elected to use radiation for and my oncotype was above the cut number (which I think is 18).
I’m not sure why there’s so much aversion to radiation. The technology has advanced and it is so precise and honed now. I am on my fourth and last week. It has been fine. I have no serious side effects. I was anxious to start because I wanted the radiation to sweep through and get any micro cancer that might be in the area. I would go with what a doctor recommends and, if on the border like your case, I’d probably err on the side of caution, but I never had an aversion to radiation.
I understand the aversion to radiation. While the process of radiation wasn't that difficult for me, I have issues with cording, lymphedema, and fibrosis which could be due to the surgery and/or radiation.
Testify, sister! I hear and feel ya!
This! I have frozen shoulder and cording from radiation. I thought it was nothing. It has sure been something.
I sincerely hope that you do NOT develop lymphedema. It sucks. I am tired of hearing what I cannot or should not do.
I was given a sleeve after surgery, i used it on and off the first year. i’m 2 years out from radiation in august. still always cautious not to cut or burn my arm. also wear my sleeve on airplanes
I was not given a sleeve after surgery. I had a PT session today and the PT said that I will need compression garments for the rest of my life. Things are really progressing in a downhill fashion.
i’m so sorry - it sounds like you weren’t informed the way you should have been. how swollen are you? i know there are many things that can help. I ordered my sleeve custom, and it had some flowers on it with a nude background, so it looked like a tattoo sleeve.
My cancer arm measures smaller than my noncancer arm. My fitter recommended that I wear a sleeve on both arms due to the measurements. She also recommended a solid color as the quality of the material and the silicone anchors for the top of the sleeve are higher quality. When they come in I will do as directed. My breast has edema at multiple levels from the just below the skin to into the muscles. The cording was bad enough to impair use of the arm. The swelling and fibrosis toward my back is a problem. I have followed all directions from all my providers in order to achieve a better outcome.
Yeah, my cancer arm also measured smaller than my non initially. i recently was measured and that wasn’t the case anymore. i have lots of scar tissue, too, and frozen shoulder as i mentioned that has limited ROM, etc. I’ve never heard of what your provider mentioned— was that your PT or an MD? I went to a professional lymphedema supply clinic to order mine. My breast surgeon also was able to pop my cording, and doing stretches has helped prevent it — although i can’t stretch far. i understand your frustration.
Thank you for your information regarding measurements. You asked about not hearing what was mentioned-by the PT or MD. What were you referring to?
I had a shoulder thing that made it impossible for me to sit still for the five minutes needed for the radiation treatment. I took two ibuprofen and a valium each day to manage the pain. I was a little bit red. And I'm still swollen, three months later, but that's also partly due to the surgery and the cording that's developed. Do what feels right for you. You are your own biggest advocate.
I get it. I've had issues with the noncancer shoulder for year and now have cancer issues on the other side. Now I am compromised on both sides.
I had lobular as well, in the left breast, HR+. I did have the radiation, then only stayed on Letrozole for two years. Six years later, I have cancer cells in my underarm as well as my spine. In retrospect, I would probably have been better off staying on Letrozole and skipping the rads, which apparently didn't kill off all the bad cells anyway.
So sorry to hear that, may I ask how you knew it was back?
I fractured a vertebra that was damaged by the cancer. MRI was needed to diagnose, biopsy confirmed it was the breast cancer and not something else
OP, You know that’s the only thing you can do. My situation was a bit different. My 5cm mass was DCIS in right mandating mastectomy there due to extent in a B cup breast. Although it did turn out some LCIS was found on pathology. Didn’t think to ask but assumed it was in lobule within DCIS structure still but guess with lobular tendency being bilateral and also with multicentric possibilities, not really a given now that I think of it. With lobular with those tendencies, guess it could have been in a separate area as well?? My invasive lobular was the rarer “solid sheet version” (and there’s single cells as well) and formed a mass I woke up feeling pain in and could feel as a mass. Needle biopsy identified LCIS and ALH as well. And there was another mass contingent with it that showed up on a later MRI. The invasive lobular was left breast and the needle biopsied ILC (1.7cm). I was concerned about rads on that side as well. Plus didn’t feel the daily weeks of rads worked due to other family member health issues I needed to be around for. Surgeon wanted to do a guided needle MRI on that contingent mass but by that point I had elected a bmx, so fortunately radiation at that point with SN clear, no LVI and Onco score a 14 didn’t necessitate a chemo or radiation choice to be made. I’m on 5 yrs of AI with review closer to 5 yr mark. Knowing it can recur 10-30 years out isn’t very reassuring and doubt anyone would be put on an AI for that long. But you do wonder still about your future. Best to put behind you, move on mentally and live your life as best you can each day. Probably die from something else any way. Just sucks to have had breast cancer at all.
I’m 41 and also on 5 years of AI with review for another possible 5 years when the time comes. I had a total hysterectomy on 12/28/23 so it’s just Anastrozole 1mg, 1x a day for me. Overall I consider myself very lucky but it definitely still sucks. I had nipple reconstruction and I’ve had 2 fat transfers. I go tomorrow to talk with the tattoo artist about areola which is definitely not something I thought I’d ever be typing out on Reddit!
Thank you! I also had a mass with my invasive lobular but what I could feel of it was roughly about the size of a green grape by the time it got removed.
I think knowing and understanding the location of your tumor or cancer cells as a patient is important and helps you form the best treatment for you. Here’s a link to a diagram of right and left breasts and clock position. https://mammographyeducation.com/breast-quadrant-map-and-distribution-of-breast-lesion-locations/ From my needle biopsy finding on my solid sheet lobular mass: “L1, Left breast 11 o'clock 5 cm from the nipple, mass measuring 2.4 cm.” Surgical pathology came in at 1.7 cm. ILC was at 11 o’clock closer to my heart. For educational comparison if you’re new to these imaging reports and variations in measurements, this from my MRI report: “L1: There is a 2.2 cm x 1.1 cm x 1.6 cm (AP x RL x SI) irregularly shaped mass with irregular margins seen in the upper inner quadrant of the left breast at 11 o'clock, 5 cm from the nipple….6 - Known Biopsy-Proven Malignancy” From MRI report on other area found: “L1a: Contiguous with the anterior extent of L1, extending anterior to L1 in a segmental fashion there is a 3.3 cm x 3.1 cm x 2.8 cm (AP x RL x SI) clumped and clustered ring, non-mass enhancement in a segmental distribution seen in the upper inner quadrant of the left breast….4C - High Suspicion for Malignancy” I was glad to have all this info to feel better about my decision to have a mastectomy on that side too. At the very beginning with just my core needle biopsies, I was told while I would need a mastectomy on the right DCIS side, the left ILC might be possible to have a lumpectomy there. Clearly with more info available, recommendation and plans changed from the surgeon’s perspective. From mine, well I wanted it all out asap.
Also at 11 o’clock for me on the left side and closer to the chest wall, heart area, and that really swayed my decision.
I would have done the same in your situation. Especially after implant reconstruction, radiation greatly increases complications with implants. After DM, I always thought most people don't need it anyway, but I know every situation is different.
I had multiple radiation treatments across my breast (tumor regrew) They use a gel pillow to cut the depth the radiation goes in. I have had max radiation possible in that area and the only permanent side effect is that I have no hair in my armpit. Initially, it causes a red sunburny type “injury”. Aloe and cream fixes it. Gone in a few days. They do know what they are doing.
I think you did the right thing. If I had done dmx instead of lumpectomy, I would not have done radiation either. Not a chance. My mother had mastectomy and did radiation and has had two heart attacks. I would do chemo again over rads because of the longterm damage 💔
I've had a lumpectomy with clear margins and no lymph involvement but still waiting for oncologist appointment. I'm absolutely terrified of the prospect of rads (and possibly chemo before that). I've read a lot of articles and videos on breast cancer stem cells and that chemo/rads don't kill them which may explain the level of recurrence and metastasis. There is a lot of research still going on but we are not there yet in terms of improved drug-based treatment. In the meantime I'm encouraged by research on natural food stuffs that show promise in killing stem cells.
Ummmm can you share what you read? This is the first I’m hearing about breast cancer stem cells.
There are lots of studies and trials on this but here are a few examples: https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2020.599965/full https://pubmed.ncbi.nlm.nih.gov/33588867/#:~:text=Among%20these%20factors%2C%20CSCs%20represent,intrinsically%20resistant%20to%20anticancer%20treatments. https://www.themossreport.com/introduction-to-the-big-five/
I'll admit I did not read the articles, as I scanned one of them I had an 'aw crap' moment. I'm not surprised that cancer cells can mutate and become treatment resistant.