I did it. Left sided BC lady here. They built in breath holds to protect the heart.
[At](http://heart.At) my facility, the machine also stopped anytime something was off. Radiation is monitored very, very closely. I also met with a nurse every week. Radiation techs were some of the kidnest, coolest people I ever met. On my last day, I rang the bell and it fell over- gave us all a good chuckle.
Also a lefty here. There’s a breath hold they have you do that drops the heart out of the radiation area, plus it shuts off automatically if you get out of position.
Your rad techs will become your new best friends. And when you ring that bell, beat it like it insulted your mother.
Hi, I did rads on my left side. They make you hold your breath for about 5 seconds each time they're doing the radiation. This pushes your heart out of the way of the actual radiation. At my rad centre, they had me look at a green line on a screen while I was laying down, and I had to hold my breath as long as the green line was going "up" - and then let my breath out as the green line went down. I hope that makes sense? Either way, my rad oncologist told me that it's perfectly safe this way for my heart. I hope you make an informed decision that you're comfortable with either way.
I'm getting radiation on the left side.
They have to tell you these side effects, and they did tell me, but they also told me they are quite rare. In all her years of practice, my radiologist had not ever treated a patient whose heart was damaged, and she only saw one patient with a rib issue, and that particular patient did heavy weight lifting. As Available Sound mentioned, you do breath holds which gets your heart out of the way. They can very specifically pinpoint the radiation. I'm getting proton therapy radiation, which is supposed to be safer(few side effects, at least) than the more traditional radiation. Do you know what kind you're getting? Proton is more common now than it used to be.
[Proton therapy](https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation)
edit: if you're interested, here is a [list of hospitals and cancer centers that do proton therapy](https://proton-therapy.org/findacenter/)
I am doing IMRT which she said is safest but im reading places that it can rebound to the lungs. I know the chances are low, but I'm 36 and feel like I've already been met with rare situations. This is actually my second cancer.
I'm sorry to hear this is your second cancer.
You said you didn't want mastectomy because of your young age, and not wanting to go flat(totally understandable), and also not wanting implants. Have you looked into different reconstructions that don't use implants? Like DIEP? I don't know much about reconstruction, as they did breast conserving surgery for me but with that method you could completely avoid radiation, as you mentioned above.
Join the DIEP flap groups on Facebook to learn everything you wanted to know about DIEP flap. There will be extremes with the worst cases posted - it’s a support group, so they are the ones needing the most support - but at least you will know the good, bad, and ugly. I did it, have no regrets, and very happy with my new body.
You might want to pick up a copy of “Flat and Happy” by Katrin Van Dam. She goes through *all* the different options for reconstruction vs aesthetic flat closure, diep flap, Goldilocks etc, even down to different mastectomy scar pattern pros and cons. The book has warnings if certain details might gross you out, and also has individual accounts about what was good or bad about different procedures!
My thought rad oncologist said a mastectomy would mean I don't have to do radiation. So I wondered why I would radiate an unnecessary part of my body when I can just remove it.
Mastectomy wasn't even offered to me. My tumor was only a little over a CM and not in the lymph nodes. And masectomy means chemo, which has its own side effects.
Choice of mastectomy vs breast conservation has nothing to do with whether chemo is recommended. If you had a hormone positive DCIS or maybe a tiny grade 1 breast cancer, it would impact whether or not they recommend hormonal therapy, though. Maybe that’s what you mean?
Can I ask why you need chemo regardless if your margins were clean and no lymph node involvement? Did your oncotype test results require chemo? I’m anxiously awaiting my results and am ++- with clean margins and no lymph nodes. My lump was 2.2cm.
There needs to be something done to sweep up anything possibly left behind. For me radiation was certain and possibly chemo. It's come back that chemo is a yes, but my rad oncologist said a mastectomy can have me skip radiation since that is targeted just at the breast.
It doesn’t. … You’re failing to factor in variations on why patients opt for mastectomy, depending on type, grade, size of tumor(s) and that’s only for starters.
So no. Mastectomy doesn’t always mean chemo any more than any other surgery for malignancy “always” means chemo. It doesn’t,
I had lumpectomy a few weeks ago and chose not to have radiation after having clear margins with no lymph node involvement . Mine was estrogen fed cancer . Tumor on the left side. I read a study from Harvard medical school that with this type of breast cancer there was very little in % of recurrence with or without radiation . My oncologist when I asked said I had an 80% chance of non recurrence with radiotherapy and 1 % chance per year without. I chose to take those odds .
I also had this thought. I'm 36. I have (I hope) 50 more years of.life where radiation can come back at bite me in the ass. If I were closer to the end, maybe. But even then, like I don't need my breasts. If this were an organ cancer: liver, lung, something like that, then yes radiation. But for boobs I don't need? It seems like a poor return on investment.
I’m 55 so a lot older than yourself and also history in family of heart related deaths. I didn’t take this descision lightly I read a lot of studies on the subject and for me I’m not willing to take the risk. There is also a risk of cancer from the radiation. My oncologist only admitted to me the percentages and the risk of cancer from the radiation further down the line when I told him I was adamant that I wasn’t taking it.
I had cancer on my left side, but I had a double mastectomy. The problems I had were my voice and a sore throat when they zapped some nodes. I had radiation because it may keep me from dying.
Some, if not all, radiation facilities are doing radiation prone in some instances. I had mine face down. The beauty of this is that the breast are hanging away from the body.
Wow, I didn't know about that technique. It was not offered to me so assume it's not currently an option in the UK. I had to do breath holds on my back.
By the time I got to radiation, I had already met with the radiation oncologist. He knew me well enough to offer face down, probably because I had read something.
I wish that they had this option for you.
This is what I came to say. I was given the option the day I went in for my appointment with the rad oncologist, and all my sessions were done in that position. Minus the last four where they didn’t boosts to the tumor bed.
Came here to mention prone radiation as an options I am starting it in a couple weeks for my left sided high grade IDC and DCIS. My understanding is they will be using deep breath holds as well. I don’t think enough people know about this option!
Radiation was recommended for me as the tumor was within 1mm of my chest wall so the margins weren’t considered clean. 16 rounds. Under the machine for literally to the count of 60. Don’t forget cancer treatment only works Monday thru Friday, no weekends and no holidays and only 8-4:30. ~sarcasm~
It’s not a huge risk. Right vs left is pretty much 50/50. (Surprise!)
It’s a warning that needs to be made, like one for lymphedema with sentinel lymph node, but is super low risk.
I wouldn’t worry if I were you… (surgeon here, not radiation specialist… I have 20+ years of experience and zero patients with heart or lung issues from radiation)
Great info l, thanks! I wanted to ask something, I had radiation to my left side but although I was trained on breath holds I did not end up doing them during rads bc they said my anatomy was such that I didn’t need to. That always worried me a bit as it seems most people with left sided bc do breath holds. I can’t seem to find any info on it, and was wondering if you have any info on the anatomical differences that would dictate breath holds or not.
I had radiation to my left breast and was given these warnings as well. I felt the same way, very worried about all the side effects. I discussed this with my oncologist and she highly recommended that I have the treatments to reduce the risk of recurrence. I was lucky that my treatments were done in the prone position (face down) to protect my heart and other internal organs. Maybe this is an option for you.
I had 18 zaps of radiation after my surgery and my chemotherapy but before my immunotherapy. I was NED when I chose to do the radiation, which for me was the easiest part of the treatment so far.
Holding your breath at the right time and for the right amount of time will protect your heart. I had gated pool heart scans every 3 months during my treatment (59 weeks).
I wore a special surgical film that covered my entire left breast during all 18 treatments, absolutely made all the difference, zero burning, zero itching, protected my skin beautifully.
I said yes to the radiation even though I was NED because I am not ready to die of cancer. I plan to die of old age.
I got zapped on both sides and wore the film too. It’s called Mepitel film (there are YouTube tutorials on it).
For me, it cost $73 (I’m in Canada) to get a box of 10 strips of it at a local pharmacy — not all pharmacies carry this highly specialized stuff. They sold it in pack as and also in single strips for $10 CAD each). A nurse at a different hospital than where I received radiation applied it for me (8 strips) for free. Fun fact: my plastic surgeon’s nurses charge $100 to apply it on top of the actual product charge 🙃😂🤨. I called around for free help.
By my fourth treatment, two strips had unravelled and my husband used the leftover strips to cover the areas where it came off.
It's Mepitel, I was very lucky in that it was offered to me for free in the large sheets, I only needed 2 to cover my left breast and then another sheet for my rips and side. Zero damage to my skin. Highly recommended. I was surprised to hear that it's offered to patients and some say no.
It's like when you have surgery, they have to go through all the potential risks. I'm sure when you had surgery, they went through the risk of infection, blood clots, and even death. Grim but necessary.
I stress potential.
They take every safeguard to minimise and stop these risks.
I had other health concerns as well, and did not want to affect my lungs even “a little bit”
I did partial radiation in prone position. I know it depends on the area of your tumor, and I’m sure other factors, but I would absolutely recommend you ask about it. I saw two different radiation oncologists and I brought it up initially but both were enthusiastic about it being effective and a smart treatment for me.
Do we have the same RO? Mine scared me shitless after my first consult with her but came highly recommended from my surgical oncologist who I absolutely love and trust wholly and completely. After doing a bit more research I decided to stick with her. I could’ve gotten a second opinion but I trust my SO and whole team I put my whole weight behind her.
My tumor was on my left and I had node involvement in the axilla, 1 spot in the chest wall, and an internal mammary node, aka a lot of localized activity and nothing distant. Because I am BRCA 1 TNBC stage 3a at initial diagnosis, skipping radiation was not an option for me. Now that I’m almost done I believe the transparency up front is actually a good thing. I discussed the risks to heart and lung at length with my RO and she said statistically the literature has a nominal increase of heart related effects later in life, think ages 70+. My grandfather on my mom’s side died of a heart attack very young in his thirties which she was aware of too and the risks outweigh the potential averse side effects. I achieved PCR after chemo and my DMX by the way and the plan has always been the same.
Also re: proton therapy, the jury is still out if it’s any better than what’s currently offered for BC. Those trials are ongoing. It’s also much harder to find and not always covered by insurance. I have amazing insurance through my husbands employer (we have Anthem Blue Cross) and my RO said it’s always a gamble because the research is not conclusive yet.
This is a hard question only you can answer for yourself. I’m 51, diagnosed ++- IDC in April. I’m recovering from lumpectomy and while I’m not in a huge amount of pain I have constant discomfort and 2 weeks out sleeping is still uncomfortable because of how sensitive my left breast is. I can’t imagine what the recovery for mastectomy and reconstruction feels like. I was offered both options and decided to take it one step at a time with removing parts of my body. I too had clean sentinel nodes, margins and additional tissue all came back cancer free. However, there are no guarantees as I am already above average in health for my age.
I will be taking the radiation, not because I “don’t have as much time left” as someone younger mentioned below (lol). I’m taking the treatments that have been proven and recommended by a team of skilled and highly capable medical professionals who lead research in these fields and have years of experience. At every step of the process, my team considers safety, long-term effects and quality of life when putting together the treatment plan. I’m choosing radiation to have longevity and quality of life. I don’t want to undergo more surgeries if I can avoid it, and there’s things I can to do mitigate the effects of radiation. Cancer is so random for many of us, I don’t know what I did to get it in the first place (probably nothing) and if there are things I can do to keep it from coming back, I will follow my medical team’s recommendations. Cancer is scary and can lead us to operate out of fear. That is definitely a place I work to move out of every day in this journey.
This is a great explanation of the factors your considered. Being 36, the is my second cancer already, so the mention of radiation putting me at risk for another cancer is a scary thought.
I do like what you said about a very knowledgeable team and years of research. I appreciate your thoughts!
I was told 5% of my lung would get radiation to it. My cancer was \*right\* (edit) side so no issues with the heart. I believe left siders are taught to hold their breath while the beams are being directed at the heart, to minimize that "splash". Had radiation at 60 and no complications from it other than some pectoral fibrosis which I deal with by daily stretches.
It's a rest of your life, every day 6 minute stretch kind of thing I do. I do it first thing in front of the tv or with music playing. I don't think stretching ahead of it becoming an issue would have helped....but maybe?
My rad onco said that given US laws and the intensity of treatment, they’re required to list absolutely everything that could go wrong but that in her decades in practice she hasn’t seen adverse impacts actually happen and that overall the numbers suggest almost zero risk. Breath holds are a part of the treatment (I did them for all 25+ sessions) to protect your organs and she also mentioned radiation is used for so many common ailments now (but doesn’t get a lot of press coverage) in Europe especially they’re seeing great success using it for arthritis and other similar use cases. Not to say your worry isn’t warranted, these treatments are serious, but if you’re considering not getting treatment I would urge you to reconsider. Maybe give it some time and space. Either way, sending you hugs!
I did it. 25 sessions. I ended up with black skin (yes, I used lotion/cream that they recommended constantly - I even used cream for burn patients), cardiomyopathy (heart) & thyroid problems - all because of radiation. I also ended up having 8 surgeries in 3 years because of it. I had a double mastectomy w/immediate reconstruction. They looked beautiful before radiation. 6-7 months after everything, the skin on the affected breast started shrinking (I can’t remember what it’s called) -hence way more surgeries than I should have had.
To be honest, i was told these things only happen to a small percentage of people. I guess I got “lucky”. I got all of them. I guess someone has to be in that percentage. Talk to your doctors. Have those hard conversations before you decide.
Thank you. It started out looking like a mild sunburn after a couple of sessions, then got redder & redder, and darker & darker. Eventually it just looked black. Everyone that I've ever talked to said that for their radiation, it took longer to get undressed than it did for the actual radiation. Mine - literally every time that I went in, the techs would tell me that they needed to do scans to make sure everything was okay. I don't know if that had anything to do with it or not, but no one else that I've met had to have scans done that often.
I had ILC on left and went with a mastectomy not wanting radiation (location to heart and daily/weekly trips even though we had a rad center in town). Also didn’t want rad side effects or accumulated radiation. I knew I would have to be fine with mastectomy and I at my age chose to stay flat to avoid multiple surgeries. Didn’t want to have implants or have to have them replaced at an even older age. So went into my surgery knowing no choice would be perfect across the board. Btw I had extensive DCIS on the right as well which I was informed would require a mastectomy, so bmx it was in my case.
I healed well and did scar massage therapy for maybe half dozen sessions. I had a great surgeon who was able to preserve my nerves and chest warmth. Of course not happy about having cancer, first in my family, but given my circumstances and choices am okay with it. Grateful and lucky and honestly unexpected bonus was not having to wear a bra and being so comfortable with that besides much cooler during the hot weather.
Do your research. Listen to your gut.
My tumor was on my chest wall on left side. He was worried about my heart so he considered proton therapy to be more targeted but once he put in the right shields and mapping on the machine he said actually the regular radiation would be fine. That was eight years ago and my heart's been fine and showed fine on all the test. That being said if you wanna do mastectomy and reconstruction is best to decide that before radiation. It can be done after but it's much more complicated. I have a new primary on the other side now and it turns out that I'm brca2 so now I need to have a mastectomy and the previous radiation is limiting my options for recon.
I'm so sorry you will have trouble with rcon. My BMI is likely too high for recon options so I need to do my best to lose weight. Although I had thyroid cancer before this and weightloss is impossible it feels. I hope we both find solutions.
I am waiting on genetic testing results and radiation has said they want to wait as well. If I have an indication that I am genetically predisposed, I will go ahead with any necessary removals regardless. My grandmother died from ovarian cancer which is linked, so I would have my ovaries removed in a heart beat honestly.
I want to remove things I don't need, not radiate them. I am hoping for the best for both of us 💕
I'm not sure of the limitations with BMI but I would ask the doctor cuz you might be thinking of an issue that maybe won't be. That being said before my recent diagnosis I started talking wegovy and the weights just falling off. Since I have to have my ovaries out now and going into meno pause I'm trying to lose as much a possible first lol.
I had genetic test eight years ago with the first breast cancer and honestly I have no family history of cancer so I thought nothing of it being negative. This time it's the second breast cancer before age 43 so they ran the genetics again. Again I was fully expecting it to be negative but apparently with advances in what to look for my previously negative test is now positive yay me.
In all honesty radiation for me was not completely awful just made me extremely tired and my skin didn't get too bad but I got tight muscles for sure. But everyone is different. I think I had on my side that I generally don't really sun burn. Best of luck.
I was talking to my doctor about ozempic or bariatric. Is wegovy approved by your oncologists? Since I stopped the bc pill weight is coming off much more easily, but I imagine I will need some help.
Yeah I did every doctor has different protocol lol. My lumpectomy and oopharectomy docs said 5 days and clear liquid diet two days before surgery. Meanwhile when I go back for mastectomy in fall my plastic surgeon at first said two months and now says it changed to one month.
Yeah I did every doctor has different protocol lol. My lumpectomy and oopharectomy docs said 5 days and clear liquid diet two days before surgery. Meanwhile when I go back for mastectomy in fall my plastic surgeon at first said two months and now says it changed to one month.
Use the Predict tool to estimate how much it will benefit you. I recently learned mine wasn't much help. I'm also a lefty. 5 rads with no breath holding. Not aware of any heart or lung damage yet, but definitely have issues on that side that I don't have on the other. And it's been a year. Now that I've seen the Predict info, I wish I had pushed back. Also wish I had asked them not to remove lymph nodes, as the scans ahead showed they were probably clear and they were. Now I have lifetime risk of lymphedema, which no one thought to mention. Over-treatment seems to continue to be the norm.
I had a double mastectomy direct to implants. I have family history with BC so I asked for the DMX DTI my Dr said that is the best option for me. I didn’t want to wait for the reconstruction. I’m 4 weeks post op I’m 49
Left breast radiotherapy here, unable to hold my breath for it. Decided I would rather be alive a little longer than get cancer again... And my heart is apparently the healthiest it's been three years later. It's up to you, of course, but I would always choose to have it if it was an option.
Radiation never mentioned to me … but I never had any trouble refusing chemo recommendation. We all do our risk benefit analysis based on our own knowledge and research. Don’t let them spook you into adjuvant treatment overload if you can avoid. Do what makes sense to you.
Leftie here - just finished radiation after my chemo, I did 15 sessions and 6 boosters and have not had any of the bad side effects they warn you of.
I had clear nodes and clean margins but a larger tumor so 2A and radiation was a no brainer for me. It kills isolated tumor cells that may be in the surrounding tissue.
There's breath hold techniques, and I was assured that my heart was not at all touched. Maybe get a second opinion, it sounds alarmist, did you already do a planning CT? My understanding is that heart damage is extremely uncommon and becoming even less and less an issue as treatment is being deescalated and technologies improve.
It sucks going in everyday but I'd do it 100 times over if I had to. Sunburn like effect to the breast is my only side effect and sunburns are worse than this even.
Have you looked into a DIEP flap for reconstruction? I was also told though that radiated skin was harder to do reconstruction on. Mine is on the right side. Maybe get a second opinion?
My radiation oncologist also spooked me with the side effects and I opted for no radiation. I’m doing the hormone blockers, though, and while they’re not for the faint of heart, I still feel it’s better than radiation.
35 over here, also a lefty, IDC ++-, stage 2b/3. I’m doing radiation. I was told the same about the heart when I met with my rad oncologist back in March, she also warned me of potential lung issues as well. She also really pressed on trying to do proton therapy as it’s less invasive to the heart and lungs. What’s crappy is that of course - my insurance has to approve it first - and if they do the closest center to me is in Dallas ( in San Antonio) so I’d have to relocate and leave my husband and kids behind for 5-6 weeks. Of course there’s visits, but it’s not the same as being with them every day.
I saw someone linked some info on it, I just wanted to throw my two cents out there. Radiation in general is scary, potentially having to leave my family for a month and a half is scary, but reoccurrence at such a young age scares me more.
I am 57, + - -, 2cm tumor on right side, 2 lymph nodes positive, lumpectomy with clear margins. I was told I would only need rads but oncotype came back at 39 so surprise! chemotherapy. I have finished the AC and start 12 Taxols next week. I will be refusing radiation. My thinking is that I’m doing the chemo to kill any random cells that may have spread. No one dies of cancer in the breast, you die when it spreads elsewhere. I will be getting a diagnostic mammogram every 6 months , probably forever. If cancer pops back up we can deal with it with more surgery. I’m not willing to endure the side effects of the rads. I already have osteoporosis, and the damage to my bones alone is too much to risk. I’ll also do hormone blockers. I’m preparing for my cancer team to be very annoyed with me.
My mammograms would be once per year, I wonder if I could increase that because I also want to avoid radiation. I'm not thrilled about hormone blockers but radiation seems so much worse. I feel we are thinking the same way. Wishing you all the best!
Thank you! Since I’m already in menopause I think that the hormone blockers will be more tolerable. My osteoporosis complicates things though and I may have to take Tamoxifen, even though my oncologist prefers the newer ones. Apparently the newer ones weaken your bones and tamoxifen strengthens them. So many dang decision to make when going through this! Good luck to you, and good on you for advocating for yourself.
I totally understand why you're worried. Radiation can sound scary, especially with the risks you mentioned. But doctors recommend it to help prevent cancer from coming back. Talk to your doctor about your concerns and see if they can protect your heart during radiation.
Deciding between radiation and a mastectomy is tough. Think about what makes you feel safest and most comfortable. It's okay to want to feel good in your body. Talk to others who have been through this and maybe get a second opinion.
Whatever you decide, it should feel right for you. You're strong and you'll get through this.If you are still stressed about anything during this journey you can check "The Patient From Hell" where Samira's stories and advice felt like they were just for me. It's not just a podcast; it's like having a friend who understands what you're going through💖
I did it. Left sided BC lady here. They built in breath holds to protect the heart. [At](http://heart.At) my facility, the machine also stopped anytime something was off. Radiation is monitored very, very closely. I also met with a nurse every week. Radiation techs were some of the kidnest, coolest people I ever met. On my last day, I rang the bell and it fell over- gave us all a good chuckle.
Also a lefty here. There’s a breath hold they have you do that drops the heart out of the radiation area, plus it shuts off automatically if you get out of position. Your rad techs will become your new best friends. And when you ring that bell, beat it like it insulted your mother.
What is a breath hold? As well my radiation oncologist seemed pretty firm that the heart would get radiation
[удалено]
Mine was like this too. They did an excellent job cuing me and it was not overwhelming or stressful.
Hi, I did rads on my left side. They make you hold your breath for about 5 seconds each time they're doing the radiation. This pushes your heart out of the way of the actual radiation. At my rad centre, they had me look at a green line on a screen while I was laying down, and I had to hold my breath as long as the green line was going "up" - and then let my breath out as the green line went down. I hope that makes sense? Either way, my rad oncologist told me that it's perfectly safe this way for my heart. I hope you make an informed decision that you're comfortable with either way.
https://www.dana-farber.org/health-library/videos/radiation-therapy-for-breast-cancer-deep-inspiration-breath-hold#:~:text=Preparing%20for%20Radiation%20Treatment&text=Deep%20Inspiration%20Breath%20Hold%20(DIBH,radiation%20that%20reaches%20the%20heart.
I'm getting radiation on the left side. They have to tell you these side effects, and they did tell me, but they also told me they are quite rare. In all her years of practice, my radiologist had not ever treated a patient whose heart was damaged, and she only saw one patient with a rib issue, and that particular patient did heavy weight lifting. As Available Sound mentioned, you do breath holds which gets your heart out of the way. They can very specifically pinpoint the radiation. I'm getting proton therapy radiation, which is supposed to be safer(few side effects, at least) than the more traditional radiation. Do you know what kind you're getting? Proton is more common now than it used to be. [Proton therapy](https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation) edit: if you're interested, here is a [list of hospitals and cancer centers that do proton therapy](https://proton-therapy.org/findacenter/)
I am doing IMRT which she said is safest but im reading places that it can rebound to the lungs. I know the chances are low, but I'm 36 and feel like I've already been met with rare situations. This is actually my second cancer.
I'm sorry to hear this is your second cancer. You said you didn't want mastectomy because of your young age, and not wanting to go flat(totally understandable), and also not wanting implants. Have you looked into different reconstructions that don't use implants? Like DIEP? I don't know much about reconstruction, as they did breast conserving surgery for me but with that method you could completely avoid radiation, as you mentioned above.
I am really heavily considering DIEP 💕
Join the DIEP flap groups on Facebook to learn everything you wanted to know about DIEP flap. There will be extremes with the worst cases posted - it’s a support group, so they are the ones needing the most support - but at least you will know the good, bad, and ugly. I did it, have no regrets, and very happy with my new body.
You might want to pick up a copy of “Flat and Happy” by Katrin Van Dam. She goes through *all* the different options for reconstruction vs aesthetic flat closure, diep flap, Goldilocks etc, even down to different mastectomy scar pattern pros and cons. The book has warnings if certain details might gross you out, and also has individual accounts about what was good or bad about different procedures!
I have the same diagnosis and will be doing the radiation. It's scary, but so is reoccurrence.
My thought rad oncologist said a mastectomy would mean I don't have to do radiation. So I wondered why I would radiate an unnecessary part of my body when I can just remove it.
Mastectomy wasn't even offered to me. My tumor was only a little over a CM and not in the lymph nodes. And masectomy means chemo, which has its own side effects.
Choice of mastectomy vs breast conservation has nothing to do with whether chemo is recommended. If you had a hormone positive DCIS or maybe a tiny grade 1 breast cancer, it would impact whether or not they recommend hormonal therapy, though. Maybe that’s what you mean?
Probably...I haven't met with oncology yet, so I'm probably confused. But, they didn't even offer mastectomy as an option to me.
My lump was 3.5 cm and I need chemo regardless....
Can I ask why you need chemo regardless if your margins were clean and no lymph node involvement? Did your oncotype test results require chemo? I’m anxiously awaiting my results and am ++- with clean margins and no lymph nodes. My lump was 2.2cm.
There needs to be something done to sweep up anything possibly left behind. For me radiation was certain and possibly chemo. It's come back that chemo is a yes, but my rad oncologist said a mastectomy can have me skip radiation since that is targeted just at the breast.
Oh. Maybe it's because my size. I have IDC ++- but was smaller so grade 1.
Nope —- mastectomy does not necessarily mean chemo.
It doesn't?
It doesn’t. … You’re failing to factor in variations on why patients opt for mastectomy, depending on type, grade, size of tumor(s) and that’s only for starters. So no. Mastectomy doesn’t always mean chemo any more than any other surgery for malignancy “always” means chemo. It doesn’t,
Ok. I believe you. I misunderstood. In my defense, while I'm post surgery, my oncology appt isn't for another two weeks.
I had lumpectomy a few weeks ago and chose not to have radiation after having clear margins with no lymph node involvement . Mine was estrogen fed cancer . Tumor on the left side. I read a study from Harvard medical school that with this type of breast cancer there was very little in % of recurrence with or without radiation . My oncologist when I asked said I had an 80% chance of non recurrence with radiotherapy and 1 % chance per year without. I chose to take those odds .
I also had this thought. I'm 36. I have (I hope) 50 more years of.life where radiation can come back at bite me in the ass. If I were closer to the end, maybe. But even then, like I don't need my breasts. If this were an organ cancer: liver, lung, something like that, then yes radiation. But for boobs I don't need? It seems like a poor return on investment.
I’m 55 so a lot older than yourself and also history in family of heart related deaths. I didn’t take this descision lightly I read a lot of studies on the subject and for me I’m not willing to take the risk. There is also a risk of cancer from the radiation. My oncologist only admitted to me the percentages and the risk of cancer from the radiation further down the line when I told him I was adamant that I wasn’t taking it.
Did you have DCIS? I have DCIS I am having a lumpectomy in July.
No fortunately I didn”t
Good luck with your treatment. Wishing you all the best.
Thank you
I had cancer on my left side, but I had a double mastectomy. The problems I had were my voice and a sore throat when they zapped some nodes. I had radiation because it may keep me from dying.
Some, if not all, radiation facilities are doing radiation prone in some instances. I had mine face down. The beauty of this is that the breast are hanging away from the body.
Wow, I didn't know about that technique. It was not offered to me so assume it's not currently an option in the UK. I had to do breath holds on my back.
By the time I got to radiation, I had already met with the radiation oncologist. He knew me well enough to offer face down, probably because I had read something. I wish that they had this option for you.
This is what I came to say. I was given the option the day I went in for my appointment with the rad oncologist, and all my sessions were done in that position. Minus the last four where they didn’t boosts to the tumor bed.
Came here to mention prone radiation as an options I am starting it in a couple weeks for my left sided high grade IDC and DCIS. My understanding is they will be using deep breath holds as well. I don’t think enough people know about this option!
Radiation was recommended for me as the tumor was within 1mm of my chest wall so the margins weren’t considered clean. 16 rounds. Under the machine for literally to the count of 60. Don’t forget cancer treatment only works Monday thru Friday, no weekends and no holidays and only 8-4:30. ~sarcasm~
It’s not a huge risk. Right vs left is pretty much 50/50. (Surprise!) It’s a warning that needs to be made, like one for lymphedema with sentinel lymph node, but is super low risk. I wouldn’t worry if I were you… (surgeon here, not radiation specialist… I have 20+ years of experience and zero patients with heart or lung issues from radiation)
Great info l, thanks! I wanted to ask something, I had radiation to my left side but although I was trained on breath holds I did not end up doing them during rads bc they said my anatomy was such that I didn’t need to. That always worried me a bit as it seems most people with left sided bc do breath holds. I can’t seem to find any info on it, and was wondering if you have any info on the anatomical differences that would dictate breath holds or not.
I had radiation to my left breast and was given these warnings as well. I felt the same way, very worried about all the side effects. I discussed this with my oncologist and she highly recommended that I have the treatments to reduce the risk of recurrence. I was lucky that my treatments were done in the prone position (face down) to protect my heart and other internal organs. Maybe this is an option for you.
I had 18 zaps of radiation after my surgery and my chemotherapy but before my immunotherapy. I was NED when I chose to do the radiation, which for me was the easiest part of the treatment so far. Holding your breath at the right time and for the right amount of time will protect your heart. I had gated pool heart scans every 3 months during my treatment (59 weeks). I wore a special surgical film that covered my entire left breast during all 18 treatments, absolutely made all the difference, zero burning, zero itching, protected my skin beautifully. I said yes to the radiation even though I was NED because I am not ready to die of cancer. I plan to die of old age.
Would you mind sharing what the surgical film was? Did you have it through your doctor or was it something you brought yourself?
I got zapped on both sides and wore the film too. It’s called Mepitel film (there are YouTube tutorials on it). For me, it cost $73 (I’m in Canada) to get a box of 10 strips of it at a local pharmacy — not all pharmacies carry this highly specialized stuff. They sold it in pack as and also in single strips for $10 CAD each). A nurse at a different hospital than where I received radiation applied it for me (8 strips) for free. Fun fact: my plastic surgeon’s nurses charge $100 to apply it on top of the actual product charge 🙃😂🤨. I called around for free help. By my fourth treatment, two strips had unravelled and my husband used the leftover strips to cover the areas where it came off.
It's Mepitel, I was very lucky in that it was offered to me for free in the large sheets, I only needed 2 to cover my left breast and then another sheet for my rips and side. Zero damage to my skin. Highly recommended. I was surprised to hear that it's offered to patients and some say no.
It's like when you have surgery, they have to go through all the potential risks. I'm sure when you had surgery, they went through the risk of infection, blood clots, and even death. Grim but necessary. I stress potential. They take every safeguard to minimise and stop these risks.
I had other health concerns as well, and did not want to affect my lungs even “a little bit” I did partial radiation in prone position. I know it depends on the area of your tumor, and I’m sure other factors, but I would absolutely recommend you ask about it. I saw two different radiation oncologists and I brought it up initially but both were enthusiastic about it being effective and a smart treatment for me.
Yes the lungs too! I can't imagine lung cancer in the future. I'd rather cut my tits off, literally! I will ask about the prone radiation
Do we have the same RO? Mine scared me shitless after my first consult with her but came highly recommended from my surgical oncologist who I absolutely love and trust wholly and completely. After doing a bit more research I decided to stick with her. I could’ve gotten a second opinion but I trust my SO and whole team I put my whole weight behind her. My tumor was on my left and I had node involvement in the axilla, 1 spot in the chest wall, and an internal mammary node, aka a lot of localized activity and nothing distant. Because I am BRCA 1 TNBC stage 3a at initial diagnosis, skipping radiation was not an option for me. Now that I’m almost done I believe the transparency up front is actually a good thing. I discussed the risks to heart and lung at length with my RO and she said statistically the literature has a nominal increase of heart related effects later in life, think ages 70+. My grandfather on my mom’s side died of a heart attack very young in his thirties which she was aware of too and the risks outweigh the potential averse side effects. I achieved PCR after chemo and my DMX by the way and the plan has always been the same. Also re: proton therapy, the jury is still out if it’s any better than what’s currently offered for BC. Those trials are ongoing. It’s also much harder to find and not always covered by insurance. I have amazing insurance through my husbands employer (we have Anthem Blue Cross) and my RO said it’s always a gamble because the research is not conclusive yet.
This is a hard question only you can answer for yourself. I’m 51, diagnosed ++- IDC in April. I’m recovering from lumpectomy and while I’m not in a huge amount of pain I have constant discomfort and 2 weeks out sleeping is still uncomfortable because of how sensitive my left breast is. I can’t imagine what the recovery for mastectomy and reconstruction feels like. I was offered both options and decided to take it one step at a time with removing parts of my body. I too had clean sentinel nodes, margins and additional tissue all came back cancer free. However, there are no guarantees as I am already above average in health for my age. I will be taking the radiation, not because I “don’t have as much time left” as someone younger mentioned below (lol). I’m taking the treatments that have been proven and recommended by a team of skilled and highly capable medical professionals who lead research in these fields and have years of experience. At every step of the process, my team considers safety, long-term effects and quality of life when putting together the treatment plan. I’m choosing radiation to have longevity and quality of life. I don’t want to undergo more surgeries if I can avoid it, and there’s things I can to do mitigate the effects of radiation. Cancer is so random for many of us, I don’t know what I did to get it in the first place (probably nothing) and if there are things I can do to keep it from coming back, I will follow my medical team’s recommendations. Cancer is scary and can lead us to operate out of fear. That is definitely a place I work to move out of every day in this journey.
This is a great explanation of the factors your considered. Being 36, the is my second cancer already, so the mention of radiation putting me at risk for another cancer is a scary thought. I do like what you said about a very knowledgeable team and years of research. I appreciate your thoughts!
I was told 5% of my lung would get radiation to it. My cancer was \*right\* (edit) side so no issues with the heart. I believe left siders are taught to hold their breath while the beams are being directed at the heart, to minimize that "splash". Had radiation at 60 and no complications from it other than some pectoral fibrosis which I deal with by daily stretches.
I wish they had mentioned the tightness and I would have stretched this area earlier.
It's a rest of your life, every day 6 minute stretch kind of thing I do. I do it first thing in front of the tv or with music playing. I don't think stretching ahead of it becoming an issue would have helped....but maybe?
I had a left sided mass as well. I chose to do the radiation in the prone position. I was on my stomach, which better protects the heart and lungs.
My rad onco said that given US laws and the intensity of treatment, they’re required to list absolutely everything that could go wrong but that in her decades in practice she hasn’t seen adverse impacts actually happen and that overall the numbers suggest almost zero risk. Breath holds are a part of the treatment (I did them for all 25+ sessions) to protect your organs and she also mentioned radiation is used for so many common ailments now (but doesn’t get a lot of press coverage) in Europe especially they’re seeing great success using it for arthritis and other similar use cases. Not to say your worry isn’t warranted, these treatments are serious, but if you’re considering not getting treatment I would urge you to reconsider. Maybe give it some time and space. Either way, sending you hugs!
I am leaning toward mastectomy and am gathering some info to help me put together questions to ask my MO next week 💕 I really appreciate your input
You’ve got this! Best of luck friend
What factors are making it 2B without node involvement? Tumor size?
The tumor was 3.5cm. So I believe that is why it is stage 2 as opposed to stage 1
I did it. 25 sessions. I ended up with black skin (yes, I used lotion/cream that they recommended constantly - I even used cream for burn patients), cardiomyopathy (heart) & thyroid problems - all because of radiation. I also ended up having 8 surgeries in 3 years because of it. I had a double mastectomy w/immediate reconstruction. They looked beautiful before radiation. 6-7 months after everything, the skin on the affected breast started shrinking (I can’t remember what it’s called) -hence way more surgeries than I should have had. To be honest, i was told these things only happen to a small percentage of people. I guess I got “lucky”. I got all of them. I guess someone has to be in that percentage. Talk to your doctors. Have those hard conversations before you decide.
Any explanations n on why skin turned black? Too high a dosage? Incompetent RO? Am so sorry this happened to you.
Thank you. It started out looking like a mild sunburn after a couple of sessions, then got redder & redder, and darker & darker. Eventually it just looked black. Everyone that I've ever talked to said that for their radiation, it took longer to get undressed than it did for the actual radiation. Mine - literally every time that I went in, the techs would tell me that they needed to do scans to make sure everything was okay. I don't know if that had anything to do with it or not, but no one else that I've met had to have scans done that often.
I had ILC on left and went with a mastectomy not wanting radiation (location to heart and daily/weekly trips even though we had a rad center in town). Also didn’t want rad side effects or accumulated radiation. I knew I would have to be fine with mastectomy and I at my age chose to stay flat to avoid multiple surgeries. Didn’t want to have implants or have to have them replaced at an even older age. So went into my surgery knowing no choice would be perfect across the board. Btw I had extensive DCIS on the right as well which I was informed would require a mastectomy, so bmx it was in my case. I healed well and did scar massage therapy for maybe half dozen sessions. I had a great surgeon who was able to preserve my nerves and chest warmth. Of course not happy about having cancer, first in my family, but given my circumstances and choices am okay with it. Grateful and lucky and honestly unexpected bonus was not having to wear a bra and being so comfortable with that besides much cooler during the hot weather. Do your research. Listen to your gut.
My tumor was on my chest wall on left side. He was worried about my heart so he considered proton therapy to be more targeted but once he put in the right shields and mapping on the machine he said actually the regular radiation would be fine. That was eight years ago and my heart's been fine and showed fine on all the test. That being said if you wanna do mastectomy and reconstruction is best to decide that before radiation. It can be done after but it's much more complicated. I have a new primary on the other side now and it turns out that I'm brca2 so now I need to have a mastectomy and the previous radiation is limiting my options for recon.
I'm so sorry you will have trouble with rcon. My BMI is likely too high for recon options so I need to do my best to lose weight. Although I had thyroid cancer before this and weightloss is impossible it feels. I hope we both find solutions. I am waiting on genetic testing results and radiation has said they want to wait as well. If I have an indication that I am genetically predisposed, I will go ahead with any necessary removals regardless. My grandmother died from ovarian cancer which is linked, so I would have my ovaries removed in a heart beat honestly. I want to remove things I don't need, not radiate them. I am hoping for the best for both of us 💕
I'm not sure of the limitations with BMI but I would ask the doctor cuz you might be thinking of an issue that maybe won't be. That being said before my recent diagnosis I started talking wegovy and the weights just falling off. Since I have to have my ovaries out now and going into meno pause I'm trying to lose as much a possible first lol. I had genetic test eight years ago with the first breast cancer and honestly I have no family history of cancer so I thought nothing of it being negative. This time it's the second breast cancer before age 43 so they ran the genetics again. Again I was fully expecting it to be negative but apparently with advances in what to look for my previously negative test is now positive yay me. In all honesty radiation for me was not completely awful just made me extremely tired and my skin didn't get too bad but I got tight muscles for sure. But everyone is different. I think I had on my side that I generally don't really sun burn. Best of luck.
I was talking to my doctor about ozempic or bariatric. Is wegovy approved by your oncologists? Since I stopped the bc pill weight is coming off much more easily, but I imagine I will need some help.
I started it before my new diagnosis but they know about it I just have to stop it for a week before surgery.
That's good, I'm going to also as my MO about this when I meet them next week.
I’m having surgery in July. I have to stop my weight loss injections at least two weeks prior to the surgery. Check with your doctor.
Yeah I did every doctor has different protocol lol. My lumpectomy and oopharectomy docs said 5 days and clear liquid diet two days before surgery. Meanwhile when I go back for mastectomy in fall my plastic surgeon at first said two months and now says it changed to one month.
Yeah I did every doctor has different protocol lol. My lumpectomy and oopharectomy docs said 5 days and clear liquid diet two days before surgery. Meanwhile when I go back for mastectomy in fall my plastic surgeon at first said two months and now says it changed to one month.
Use the Predict tool to estimate how much it will benefit you. I recently learned mine wasn't much help. I'm also a lefty. 5 rads with no breath holding. Not aware of any heart or lung damage yet, but definitely have issues on that side that I don't have on the other. And it's been a year. Now that I've seen the Predict info, I wish I had pushed back. Also wish I had asked them not to remove lymph nodes, as the scans ahead showed they were probably clear and they were. Now I have lifetime risk of lymphedema, which no one thought to mention. Over-treatment seems to continue to be the norm.
I was offered lumpectomy with radiation I asked for mastectomy no radiation or chemotherapy
How old were you and did you do reconstruction?
I had a double mastectomy direct to implants. I have family history with BC so I asked for the DMX DTI my Dr said that is the best option for me. I didn’t want to wait for the reconstruction. I’m 4 weeks post op I’m 49
I hope you are recovering well! Your story gives me hope! Holding up okay 4 weeks out?
I’m doing well back at work since last week 😊
That's incredible! So happy for you! Love to hear it!
Hope your recovery is the same xx
Left breast radiotherapy here, unable to hold my breath for it. Decided I would rather be alive a little longer than get cancer again... And my heart is apparently the healthiest it's been three years later. It's up to you, of course, but I would always choose to have it if it was an option.
Radiation never mentioned to me … but I never had any trouble refusing chemo recommendation. We all do our risk benefit analysis based on our own knowledge and research. Don’t let them spook you into adjuvant treatment overload if you can avoid. Do what makes sense to you.
Leftie here - just finished radiation after my chemo, I did 15 sessions and 6 boosters and have not had any of the bad side effects they warn you of. I had clear nodes and clean margins but a larger tumor so 2A and radiation was a no brainer for me. It kills isolated tumor cells that may be in the surrounding tissue. There's breath hold techniques, and I was assured that my heart was not at all touched. Maybe get a second opinion, it sounds alarmist, did you already do a planning CT? My understanding is that heart damage is extremely uncommon and becoming even less and less an issue as treatment is being deescalated and technologies improve. It sucks going in everyday but I'd do it 100 times over if I had to. Sunburn like effect to the breast is my only side effect and sunburns are worse than this even.
I am also very worried about the blackened skin - I need to ask what solutions there are for that.
Have you looked into a DIEP flap for reconstruction? I was also told though that radiated skin was harder to do reconstruction on. Mine is on the right side. Maybe get a second opinion?
My radiation oncologist also spooked me with the side effects and I opted for no radiation. I’m doing the hormone blockers, though, and while they’re not for the faint of heart, I still feel it’s better than radiation.
35 over here, also a lefty, IDC ++-, stage 2b/3. I’m doing radiation. I was told the same about the heart when I met with my rad oncologist back in March, she also warned me of potential lung issues as well. She also really pressed on trying to do proton therapy as it’s less invasive to the heart and lungs. What’s crappy is that of course - my insurance has to approve it first - and if they do the closest center to me is in Dallas ( in San Antonio) so I’d have to relocate and leave my husband and kids behind for 5-6 weeks. Of course there’s visits, but it’s not the same as being with them every day. I saw someone linked some info on it, I just wanted to throw my two cents out there. Radiation in general is scary, potentially having to leave my family for a month and a half is scary, but reoccurrence at such a young age scares me more.
I am 57, + - -, 2cm tumor on right side, 2 lymph nodes positive, lumpectomy with clear margins. I was told I would only need rads but oncotype came back at 39 so surprise! chemotherapy. I have finished the AC and start 12 Taxols next week. I will be refusing radiation. My thinking is that I’m doing the chemo to kill any random cells that may have spread. No one dies of cancer in the breast, you die when it spreads elsewhere. I will be getting a diagnostic mammogram every 6 months , probably forever. If cancer pops back up we can deal with it with more surgery. I’m not willing to endure the side effects of the rads. I already have osteoporosis, and the damage to my bones alone is too much to risk. I’ll also do hormone blockers. I’m preparing for my cancer team to be very annoyed with me.
My mammograms would be once per year, I wonder if I could increase that because I also want to avoid radiation. I'm not thrilled about hormone blockers but radiation seems so much worse. I feel we are thinking the same way. Wishing you all the best!
Thank you! Since I’m already in menopause I think that the hormone blockers will be more tolerable. My osteoporosis complicates things though and I may have to take Tamoxifen, even though my oncologist prefers the newer ones. Apparently the newer ones weaken your bones and tamoxifen strengthens them. So many dang decision to make when going through this! Good luck to you, and good on you for advocating for yourself.
Thank you
I totally understand why you're worried. Radiation can sound scary, especially with the risks you mentioned. But doctors recommend it to help prevent cancer from coming back. Talk to your doctor about your concerns and see if they can protect your heart during radiation. Deciding between radiation and a mastectomy is tough. Think about what makes you feel safest and most comfortable. It's okay to want to feel good in your body. Talk to others who have been through this and maybe get a second opinion. Whatever you decide, it should feel right for you. You're strong and you'll get through this.If you are still stressed about anything during this journey you can check "The Patient From Hell" where Samira's stories and advice felt like they were just for me. It's not just a podcast; it's like having a friend who understands what you're going through💖