Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Starting Radiation January, 2022

Options
1246

Comments

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Hello all,

    I am lined up for 6 weeks of radiation and wondering if skipping is a course of action anyone takes? 0/8 nodes. I see some of you have less weeks of radiation here and I don't understand this. I am lined up for 30 rounds of radiation. (5 weeks + 1 week of boosts to the area where the tumor was).

    Oncotype is only 18, so no chemo. Low risk. It was left breast quadrantectomy for a 2.7cm tumor, negative margins. The first radiologist misdiagnosed the size to 4.7 so more tissue was taken the necessary. Also, more nodes obviously. He took 3 fat pockets that lit up from the dye, not knowing there were multiple nodes inside each pocket because he said they were so small. My bad for having small nodes. Everyone says missing 8 nodes is a non-issue. Shoulder shrug.

    I am wavering because of the left-breast (breathing technique assists with heart not being hit with radiation but it is still terrifying). I am concerned about my lymph nodes though she says they will not be radiated. Will they be ok? I don't even know how may I have left. To me, if later my heart and lungs don't function properly and I have lymphedema, is that a good quality of life? What are the risks really?? Any advice there? I don't want to back out of something that can save my life and keep a cell from traveling around, but I have a 20% of recurrence now and radiation takes it to 8%. I'm only 50 so they say I cannot skip it. Anyone out there skip it?? I am supposed to start tomorrow so please help!!

  • txlorelei
    txlorelei Member Posts: 68
    Options

    Hooray I'm done! Happy Valentine's Day Heart

    It's just my luck that on #30, the machine would break down (with me on it)again! They had to move me to the other one. My skin is red and itchy, especially on my neck where they targeted the lymph nodes. The RO said it should heal in a couple of weeks.

    Caligirl, it's my understanding that when having a lumpectomy (instead of a mastectomy) it is generally assumed that radiation will follow even with good margins.

  • hippmark
    hippmark Member Posts: 92
    Options

    Hi. I am not very well versed in radiation yet as I am still in the chemo stage. However, I was originally scheduled for 4 weeks of rads from my biopsy. Then, when they found one positive node, it was changed to 6 weeks including lymph nodes. I am pretty certain that unless you have a positive node, lymph nodes are not included.

    I would not skip radiation. Reducing your risk from 20% to 8% is a big reduction. If you had a lumpectomy, radiation is the standard course of treatment. Fortunately, you were able to bypass chemo. Perhaps you can have a further discussion with the radio onc so you can understand why they are recommending 6 weeks. But, I personally would not consider skipping radiation. You want to throw everything you can at this. Not regret it at a later time.

  • mfk
    mfk Member Posts: 35
    Options

    TXLorelei - congratulations! I'm sure all of your valentines are happy for you.

    Caligirl - I don't pretend to fully understand the exact extent of the risk to my heart and lung, but the planned dose to those areas with the breath hold was extremely small compared to the dose to the tumor bed. A physicist runs the numbers and works with the RO to document all of the stats. They published that information to MyChart before I started treatment. My breath hold was very easy, although they tested me for a longer time period (30 seconds) in the planning meeting just to see if I could handle the worst-case scenario. I wouldn't say no without at least going through a thorough consultation.

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    What is your schedule? I am concerned about and entire 5 weeks and a 5 day boost afterward. I am low risk and no nodes.

  • mfk
    mfk Member Posts: 35
    Options

    I had fifteen fractions (three weeks) of partial breast at 267 cGy for a total of 4005 cGy for Grade 3 DCIS. No boost. That's a shorter course than most of the folks who have been posting, so I certainly feel fortunate about the duration.

  • star2017
    star2017 Member Posts: 370
    Options

    Hi all, I've undergone radiation three times, at a practice I love, so I thought I'd share.


    In 2018 I had breast area/chest wall radiation to the rt side, 30+ 5 boosts.

    My RO and her practice are great. It's a quick swipe in, change, and then they get us on the table pretty fast. In those first few weeks it was rough because it was hard to position myself in the mold and lift my arm up after lymph nodes were removed. I did the breath holds too, but those were okay. I remember most days the positions/treatments were quick, but one day they just couldn't position me right, and I almost ended up missing my son's preschool graduation. I was so distressed and in tears, and the techs kept apologizing. I should have just scheduled later in the day, but I was so scared and overwhelmed at the time, I didn't think of it. Obviously there was just a lot going on. I applied aloe regularly immediately after treatment and aquaphor later in the day. My skin turned red, then a brown/grey. The underbreast and underarm area chaffed badly, and I had to apply silvadine toward the end. Now the skin looks normal.


    Last year I was diagnosed with the metastasis. 15 treatments to my hip and sacrum. Super easy. You swipe, positioning is easy, zap, and go. Mostly my skin was fine, but there was chafing and peeling at the groin, so I applied silvadine there.

    This year, another met, to the femur. 13 treatments, finished last week. Again, super easy. Swipe, position, zap, go.


    My treatment room ceiling is lit with images of palm trees and blue skies. How about yours?

  • oldladyblue
    oldladyblue Member Posts: 302
    Options

    Caligirl55555 I understand your frustration, however, I think you should do what the doctors recommend. I know of 2 women who skipped some of the treatments recommended 10 and 13 years ago and ended up with Stage 4 cancer within the last 5 years.

    I had a small tumor fully removed, no node involvement, but did chemo and radiation and am starting hormone suppression therapy this week. I wanted to be able to look back from the future and know I did everything I could to keep myself free of cancer in the future.

    For me, left breast radiation was done while I was lying face down on my tummy. The RO said that would be the best position to avoid heart and lung involvement. I notice no heart or lung effects, and I had very little in the way of skin reactions.

    Whatever you choose is totally up to you, but radiation was so simple for me compared to chemo. I thought about skipping chemo as I was Oncotype 28, no nodes. The reduction in future recurrence was estimated at only 7% less with chemo than without (provided I did rads and hormone therapy). I am glad I did it, for peace of mind about the future.

  • jen2957
    jen2957 Member Posts: 75
    Options

    Oh, gosh! I’ve been offline for several days and missed so much! I did want to quickly reply to CaliGirl. I just finished #17 of 25, then may do 5 boosts, depending on whether my skin is healthy enough. My RO and I spoke about an accelerated schedule of higher doses per day for fewer days; however, because I have a tissue expander in place, we wanted to give my skin every opportunity to remain as healthy as possible. So “slow cooker” was the best option for my personal situation. Treatment plans vary in several ways and length of treatment doesn’t tell the whole story- it is about the cGy being delivered and to where and at what angle.

    As someone else wisely said, this is your decision to make and none of us here will judge you for what you decide is best for you. We will support you no matter how you decide to proceed. If my risk % was the same as yours, I would look at it like this- If someone put 5 cards on the table and told me that 1 of the 5 (20%) was the “cancer recurrence card” and I had to draw a card, I know I would be more than willing to let them add 7 more non-cancer cards to that pile (to reduce the chances to 8%) before I drew mine out. To me, radiation treatment gives me just one more tool against drawing the cancer card. For those of us for whom chemo is statistically ineffective, that’s already one less tool we have to fight recurrence or metastasis.

    Thinking of you as you make your decision and begin this process

  • Caligirl55555
    Caligirl55555 Member Posts: 20
    Options

    Thanks all! I began treatment today. 5 weeks, possibly no boosts during week 6. I am on the slow cooker schedule like Jen2957! :) I had reconstruction after tumor removal so she felt 2 grays would be easiest on the tissues. I am node negative. Doc said that they will still get hit with radiation as the rays splay across. Is that true? I was told they would not be targeted at all because they were clear. Are you armpit nodes supposed to get hit like that even though negative?? Please help! I have trouble sleeping because of this and I had my first treatment today. I don't want to go back tomorrow. Lymphedema terrifies me and he already took out 8 because he didn't know each fat pocket actually held MORE lymph nodes. The pockets were so small he thought they had one in each. The pockets lit up with dye so he took them out.

    Signed, terrified of latent effects!

  • kotchaj
    kotchaj Member Posts: 212
    Options

    Hi Caligirl555,

    The down from 20 to 8% would make me do the radiation, but that is my own opinion. I'm 57 and have followed the protocols put in place for my treatment. I did have a bit of a change when surgery occurred and I ended up with two kinds of breast cancer, one that responds to chemo, one that doesn't. According to my docs I am NED right now and would love to stay that way, so radiation was going to be done.

    I was told that radiation can "splash", so it sounds like this is what will happen with yours. They aren't being targeted, but they will most likely get hit. I have to have radiation all the way up to my clavicle on the left and have been told that I may have some splash to my throat area. I have had 5 treatments so far, had 21 nodes removed under my left arm and am not having any side effects because of it if that helps you feel better at all. I've had zero lymphedema, knock on wood, since my surgery in December.

  • mfk
    mfk Member Posts: 35
    Options

    I had my annual physical this week and the CBC panel came back with a white blood cell count on the lower end of the normal range. Apparently that's a common side effect of radiation therapy. No symptoms at all. It's still within the normal range at 4.6 K/uL, just lower than my normal in the low 6's.

  • gamzu710
    gamzu710 Member Posts: 203
    Options

    Had #16 today, the last of the whole-breast radiation. Tomorrow is my first of 4 boosts. So far the breast is pink and a little tender but 99% of the time I forget about it.

    I got a MyChart notification this afternoon and logged in to discover that the RO's office has scheduled a 3-month follow up for me in June, again without asking me about the date/time or mentioning anything about the need for a follow-up to me. Really, really not impressed. The communication in this office really sucks.

  • sunbunny5
    sunbunny5 Member Posts: 8
    Options

    So I finished my radiation today… 20 rounds. There was no sirens, foghorns, glitter cannons. It was so anticlimactic. I got off the table and said my goodbyes. 9 month of treatment and I just walked out the door. Just like that. DONE. Zero fanfare or celebration. It’s finally all over. I just want to scream at the top of my lungs. It’s so damn surreal…

    on another note I have the worst blisters under my breast…

  • jen2957
    jen2957 Member Posts: 75
    Options

    Sunbunny- there may not have been any fanfare there, but I’m sending you plenty of virtual whoops and celebratory primal screams! How wonderful!!!!

    Gamzu- Yea, I agree- that sucks. I’ve had appointments pop up in MyChart before I got the phone call about scheduling, but I always get a call. We give up enough control over our lives during this ordeal; having someone assume your time is theirs just twists the knife.

    Mfk- Very interesting about the CBC. Thanks for that info!

    CaliGirl- Welcome to the BBQ, baby (when I started using that term when I started treatment six weeks ago, my mom hated it and didn’t want me to call it that…now she never says radiation anymore, just BBQ. It’s dark humor, but it helps me cope). I hope you have a good experience with few side effects! Not sure if they prescribed Mometasone or not, but I recommend asking about it if they didn’t. I also recommend something called Numb520. My RO typically recommends Alocaine, which is 4% lidocaine, but he approved this 5% liposomal cream I found and it has been a lifesaver when it comes to numbing the nagging itchies and stings. Don’t hesitate to ask if any of us can help you along your way.

    All- My RO unexpectedly decided to nix the five boosts from my treatment since I am quite red and since I had re-excision of my positive margins (determined to be benign in that excision). I have had the bolus the entire time, so my skin has been targeted by much of the rads dose. Thursday will be my 25th and final treatment (hopefully forever). The trip I had hoped to go on with my husband? That flight leaves Friday!!!! I cannot believe the timing worked so well, but I am thrilled. It will be nice to not be beholden to cancer’s needy schedule for a little while.

    On another note- I have mentioned the Mepitel Film use…Long story short…I asked about it at first, then felt like they may have thought I was a flake bc no one at my typically research-forward hospital had heard of it, but my RO reviewed the research I sent him, then approved it. The hardest part was finding it as it has been discontinued by CVS here in the states. It was a whole thing and I didn’t get to start using it until almost halfway through my treatment. Anyway…today, the two medical physicists met me at my treatment and wanted to see the film. I gave them my research packet and they had done some preliminary research as well…turns out the Nactional Cancer Institute is now getting ready to do a clinical trial of it (in addition to Mayo, Allegheny, and others). They are super interested in it and said it could be “an absolute game changer” for many of their future patients. I am so incredibly thankful for the people on these boards sharing their knowledge and experiences! If not for the info shared throughout this site and specifically in the Mepitel users thread, many of us would be completely unaware that this could be a potential options for significantly reducing skin reactions. If you know someone beginning rads, I highly recommend looking into using the film (must be Mepitel Film, not any of the other Mepitel products). I have compiled a list of links to research and info on it- I’m happy to share if anyone needs it




  • kotchaj
    kotchaj Member Posts: 212
    Options

    Jen2957- Oh my gosh, YAY, girl!! You get to go on your trip, I'm so freaking happy for you! Best celebration ever!

    Tomorrow is my halfway point of rads. No reactions so far with the exception of skin being a little pink. I've stolen your human BBQ term and my friends and family just laugh about it. Dark humor works for me, too. I am using the Momatesone cream with I feel good results so far. Of course, I'm still early on.

    Enjoy your trip!

  • gamzu710
    gamzu710 Member Posts: 203
    Options

    Wow, fantastic stuff, Jen2957! Both on being done early and your contributions with the Mepital film! Congratulations.

    I had my first boost this morning and being able to see what was going on instead of being face down was quite a revelation. I was finally able to pair up the noises the table made with the sensations it induced and see how it actually was moving when that happened and it didn't match up to my imagination at all! For a change I felt like the techs actually explained everything quite well to me and I understood what was going on. 3 more to go.

  • kotchaj
    kotchaj Member Posts: 212
    Options

    Gamzu710-

    I'm so very glad that one went much better than what you've had to go through and I can only imagine just how different that much have felt before.

    First of 4 boosts done, you are SO CLOSE to being done here girl. I'm jealous:-)

  • dres123
    dres123 Member Posts: 45
    Options

    Hi everyone,


    My wife finished her 25th and final radiation session last Wednesday. It was a slog, but we got to the finish line. There were times when we were just running on fumes, but for those of you who are still going through it, keep at it, you'll get there soon enough!


    One thing my wife was not prepared for was the fatigue and pain *after* radiation was finished. Her skin was mostly fine until about session 20, and it systematically got worse from 21-25. It's worse now than it has ever been, and that's with a week off. The radiation oncologist said that this is normal--she finished on Feb 16 and he said that she can expect side effects for about a month.


    I hope and pray that this really does the trick for us. I hope that for each of you as well. Much love and stay strong!!!

  • gamzu710
    gamzu710 Member Posts: 203
    Options

    Still 3 more to go, sigh. I got a call at 7am that the machine was broken and that I shouldn't come in. I felt bad for the poor tech who had to call all those patients at that hour. This pushes my last day to Monday, which is frustrating, but what are you going to do? At least it let me shut my alarm and sleep an extra hour. I was supposed to see my RO today but that's been moved to Friday. Which, for the first time, my nurse called in advance to check with me (I guess getting mad at them made an impression). She also confirmed that the engineer came and fixed the machine, so hopefully tomorrow is a go. I have another Herceptin infusion so I have to be there anyway, but if I go to radiation as well then they validate my parking (MO's office doesn't) and it saves me $10!

  • jen2957
    jen2957 Member Posts: 75
    Options

    KotchAJ- Thank you! I am still kind of stunned that it worked out as well as it did timing wise. And girl, you don’t steal my BBQ phrase, you EARNED it! 😉 Congrats on the halfway point- I hope everything goes beautifully for the second half and will be cheering you on along the way!

    Gamzu- As I read your post about being flipped (like a rib-eye) to face up, it made me wonder if the techs felt more connected to you after they actually saw your face the whole time. I tried to imagine what I would have pictured if I had been unable to see what was going on, too, and I can totally understand how you could be completely disoriented. As for the machine breakdown- YUCK! I went through that once, too. I had already driven in, but I did go ahead and see my RO while I was there. My facility has free parking overall, but the rads department has ten reserved parking spots in the physicians’ parking garage that they provide a pass for throughout rads. It seems to me that the ROs need to be put in charge of all parking!

    Dres123- Congratulations! I sincerely hope your wife continues to improve and that you never have to deal with this again. I’m so glad you mentioned the after-radiation reactions. I had been told that things will get worse before they get better, but it’s hard to wrap your brain around the delayed reaction once you’re finished. That’s very helpful to keep in mind and a reminder to give ourselves some grace for a while, even if the treatment part of over.



  • gamzu710
    gamzu710 Member Posts: 203
    Options

    Jen2957--Yup, I do think that's probably part of it. When I'm face up, the techs are noticing that I'm watching what they're doing, or looking at something on the machine, and they tell me what it is. It's harder to connect with someone when you can't see their face; you miss all the non-verbal cues and it's de-personalizing.

  • star2017
    star2017 Member Posts: 370
    Options

    HI all, hope you're doing well.


    My 13 treatments to my femur ended 2.5 weeks ago. My skin looked totally fine. Then a week later I noticed sensitivity at the back of the leg. Totally forgot to apply any aloe or aquaphor at the back! You'd think I would've gotten the hang of things.


    So the back of the thigh is dark red and irritated now, and sitting is sometimes painful. Mostly it's sitting on a toilet seat that is uncomfortable, and I've taken to putting a tissue paper down. It's so funny how the radiation side effects can show up a week or two later. I'm pretty tired these days too.


    Anyway, make sure to check your skin at the back of your treatment area too. Wishing you all good health.

  • oldladyblue
    oldladyblue Member Posts: 302
    Options

    Yes, it was true for me that the after radiation side effects show up in the weeks after radiation ends. It did for me. Plus I got Covid 5 days after radiation ended so my immune system was down too. My breast is no longer swollen and the redness is gone, but the dark brown color in places where it wasn't even that pink during radiation is shocking. Also I had moles and spots on my chest and under my breast that got darker and harder and may fall off now (I hope). I have my follow up in a few weeks so I will see what the doctor says.

  • txlorelei
    txlorelei Member Posts: 68
    Options

    My skin started peeling about a week after I finished and is still ongoing. I wonder how long it will take for the skin to fade back to its normal shade.

    Congrats to everyone who is finishing up!

  • jen2957
    jen2957 Member Posts: 75
    Options

    Ugghhh! I am finished and happy to be sitting on a balcony overlooking the sea right now, but as with many things, cancer just refuses to let us have our moments! I am on the balcony because my skin hurt so badly that I had to come back to the room and take off my bra and put on the loosest thing I packed! My skin is red, raw, and angry- even under the Mepitel film. I have no doubt that the only thing holding the top layer of my skin in place is this precious slip of silicone and plastic! What the actual hell, guys!?!? This delayed reaction stuff is the PITS and I have only just begun. I do acknowledge that the bolus was my worst skin enemy (skinemy?), but I’m absolutely done with this big awful looking, scalded, searing pain-inflicting square on my chest!

    Gamzu- do you finish Monday???? Oh, I do hope you’re still on schedule!

    Star, Blue, and TXLorelei- I was talking to my cousin who is a clinical research coordinator in brain cancer at my facility and told her I thought I might make an appointment with my dermatologist. Bless her- she told me she had become good friends with the dermatologist she used to work with at my facility- and that doc is the only oncology dermatologist in my state (Ky), so she referred me there. I will see her the Wednesday after I return from this trip. The radiated area is over a previous squamous cell carcinoma skin cancer, so I am particularly worried about it since our chances of skin cancer increase after radiation. Perhaps it is worth looking into in your area? I feel like our ROs are way out of their depth when it comes to skincare.

    All- I rang the effing bell. I rang it for the people in the waiting room who were just starting and needed to know it would end and I rang it for our Sunbunny!!!! They also gave me a Certificate of Completion for rads. I’m not sure what accomplishment that was- I hated it and don’t feel like I accomplished anything it to destroy my skin (and hopefully cancer with it).

    What oils we do without each other and the understanding that comes only with walking the path yourself or beside some close to you

  • sunbunny5
    sunbunny5 Member Posts: 8
    Options

    Jen2957 - thank for ringing it for me!!!!!

    So I just finished my 20 rounds of rads last week and I'm finally done with 9 months of this nightmare. Despite being finished, I've felt worse in the last two weeks then I have in months. I know they say that we will feel fatigued, but this is definitely different. I’m sore and achy all over, plus I’ve been needing my nausea meds again. So weird, bc I feel like it’s chemo side effects hitting me. Some days I think it’s bc I overdo it at work, but this took me out all day in a Sunday after a relaxing weekend. I literally woke up, napped and repeated multiple times yesterday. I’m also getting cruddy sleep bc the radiation burn pain wakes me in the night if it rubs.

    My RadOnc follow up isn’t for 6 weeks. Does that sound on track with the rest of you? Seemed long to me. Thanks and be well yall

  • gamzu710
    gamzu710 Member Posts: 203
    Options

    20/20 completed this morning. Yay! I got a "diploma" and they offered to let me ring a bell but I wasn't so into that. With Herceptin and tamoxifen and late recurrence risks, it feels like there's no finish line in BC. But I'm very happy to not have to shlep over there every morning.

    Sunbunny5, my follow-up is June 1, which I guess is 3 months out. So 6 weeks seems early to me and I wish I had that! They are probably estimating that 6 weeks is when the effects should have peaked and subsided so if anything is still lingering they can act.


  • kotchaj
    kotchaj Member Posts: 212
    Options

    Congratulations Gamzu710! Yay!! You're done with this part of the journey! I feel the same way about never being done with BC, but it's a step in the treatment plan that gets you a little bit further away from where you started with it. Please keep us updated as you get further away from this with any side effects, I'm hoping you have none from radiation.

    I'm going for BBQ #12 this afternoon. Two cancels due to weather, but according to our weather report, I'm good for the next 9 treatment days. My treatment center doesn't do the bell thing. I wish it did because I'd ring that sucker!

  • kotchaj
    kotchaj Member Posts: 212
    Options

    AAARGH!! Just got a call from the radiation center that the machine is not working today. So, third day of not having my radiation. None of these were controllable, but I'm annoyed as heck about it right now. It doesn't help anything, but I won't be done now until a week from Friday.

    Ookay, pity party over with. Pulling up the big girl panties and marching on...