Radiation February 2019
Comments
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KBlank-I also have a swollen and firm breast on the rads side, but it isn’t that painful and red as yours sounds. I’m sorry you are going through this!
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I read online that this is a good burn formula for those who don't love commercial skin products. The key is finding no alcohol versions of the below. You put them on in this order
1. calendula extract (I could only find oil that was no alsohol), 2. Aloe vera gel 3. cocoanut oil or hemp oil mixd with a few drops of lavender oil. (1 tsp + 2-3 drops).
You let each thing soak in before putting on the next one.
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Hey everyone,
I will share a bit of information that has been helping me so far. Hopefully it can be useful to some of you who are experiencing issues during radiation.
- I bought the recommended sports bra (100% cotton) but didn't find it as comfortable as my "formula": I wear a very old T-shirt (cotton) and an old comfortable bra (no wires) over it. On top of the bra I use a "regular shirt". In short: The only piece of clothing that has direct contact with my breast is any "ancient" 100% cotton t-shirt. :-)
- My rads are in the morning, and as soon as I am done, I apply a THICK (really thick) layer of Aquaphor. I do this while I am at the radiation center, at the time I am changing from the gown to my regular clothes. After applying the lotion, it's the same routine: old cotton T-shirt, old comfortable bra, regular shirt, coat.
- I am drinking at least 4 liters of water / tea during the day, specially just before and after rads. I prefer Perrier as it contains Calcium.
- During the day I apply lotion (Eucerin) at least 3 x . As my radiation is early in the morning, I don't apply it before my appointment, but both my doctor and the technicians said it would be totally fine. There is no need to "wash the area" to take the lotion off before treatment. There are several articles supporting this, just Google it.
- I hired a certified physiotherapist to come to my place in order to teach me "the best exercises to avoid lymphedema". Although lymphedema can happen to anyone (regardless if the person is exercising daily or not), I came to articles stating that daily diaphragm/arms/hands exercises can decrease the chances. It's still something not "totally proven" (as it happens with many other subjects related to cancer). My list has 25 different exercises, many of them are the same prescribed by the breast surgeon. You may want to follow the exercises prescribed by your doctor / hospital. I would suggest to repeat them at least twice a day (although the PT said 3 times a day would be "ideal"). I am doing the lymphatic exercises in the morning (after treatment) and in the evening. In case you don't have such a list from your surgery center, or don’t want to book a consultation with a PT,look on YouTube and you will find several. Accordingly to my PT, "shoulder blades squeeze" and "diaphragmatic breathing" are the most important.
- I also learned from the PT that, regardless the side of surgery, the exercises should always start with the left arm, as the left side of our body contains 80% of the lymph nodes. The goal is to keep fluids moving easily, and this happens when we start exercising with the left arm / hand.
- I am sleeping with a pillow under my arm (surgery side), in order to have hands and arms higher than heart. Hubby is "ok" with the new "intruder" between us.
- I had a little swelling in the surgery site, just for one night, and that was the night I didn't do the breathing/ diaphragm exercises in the evening. The next day, after the lymphatic exercises, I was 100% fine.
- Before diagnosis/surgery I was already active, spending at least 1 hour (daily) @ Gym. I increased it to 3 hours / day. Till this date there's no fatigue accompanying the radiation treatment. There's literature supporting the assumption that exercising (walking at least 3 miles a day) can help to reduce side effects, specially fatigue, during radiation.
- My radiation treatment didn't finish yet but so far I feel great and that's the reason I'm sharing the "little big things" I have been doing. I hope they can help some of you.
Wishing everyone a smooth February! Can't wait to end this and return to my previous life.
Warm hugs to all!
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Rav, thank you for the tips! I start my 3 week course on Wednesday. I’ll be trying all these tips for sure! I’m already at the gym every day for an hour and I definitely plan on continuing that and staying well hydrated and clean eating.
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I've taken a few days break from all things cancer related but wanted to check back in here because I knew so many of you were finished or close to finishing.
KerLyn, Mymomsgirl, Heather2018, OTMom, CHB87 and anyone else I may have missed (sorry); Congratulations! It's definitely an accomplishment
Today is day 5 that I have been radiation free.The biggest relief has been the freedom of not having my life revolve around those daily appointments. Getting back to some sense of normalcy has been uplifting.
My symptoms, burning, itching, skin tightening, etc., have definitely increased since my final session. However, my RO and all my techs warned me that that's normal so I was mentally prepared. Also, my skin has started to slough off in some areas and my whole breast is starting to tighten up quite a bit. Lymph node incision and nipple areas are the most sensitive. Haven't been able to tolerate a bra for quite a while. Luckily it's winter so it's not so noticeable in winter layers. I've used thin fleece strips of material against my skin. I just tuck one down the armhole of a soft T-shirt and let it fall a little down my treated side. Very comfortable plus helps keep the lotions/oils in place - especially at night.I have longer, wider fleece pieces and a couple of squares. Depending on what I'm wearing, I can place them strategically and they work like a charm.
My nurse advised me that yes, I want to stay as active as possible but since my skin has gotten so tight to NOT get carried away with forcing the stretching. She said do only what's comfortable but the last thing I needed to do was to open up my skin. She's seen several women who've made it thru the whole process and then over do things at the end. So, on her advice, I've given up vacuuming! 😆😆 Just kidding there but she did specifically mention over zealous stretching & vacuuming as frequent culprits. Some of my fellow radiation buddies at my cancer center had open skin areas and it was horrible for them. I'll have plenty of time to again start pushing the stretching once my new skin is a little stronger.
Sending healing thoughts to all of you. Go, Warriors!👍
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Hello all,
Adding to the perspective of FaceForward, I am now two months past my final radiation. Nothing hurts!!! I am still doing gentle stretches every morning and using a little moisturizer although that probably isn't necessary. Aside from the weird one-sided suntan there are no residual effects from my December rads. Am going back to normal bras.
[Removed some stuff about arimidex, will post that in the proper thread]
Looking forward, I am taking down all the sick room stuff. The counter full of moisturizers. The cards on the wall. The daily chart that I filled in after each radiation treatment. The paper stuff is going in a special box in case I need to remind myself of all the love and support that family and friends sent. It's time to put that behind me and start living my life again.
Wishing you all a gentle recovery. I promise it gets better!!
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Egregious, what a lovely message to read! I am so happy that you are moving back to being yourself. The thing has had it’s turn, now you can have your life back for the important things. We know some things have changed, but we also have learned so much in this season.
Every blessing to you
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Rav- Thanks for all the tips
I had no idea 80% of our lymph nodes were on the left side! So interesting.
Facefoward- I think that is a great argument for no vacuuming
I am so glad you are doing well, and happy that you are done. Still think that is one amazing hubby that you've got there.
Egregious- Glad to hear you are doing well and putting away the lotions.:)
Santabarbara- I will have to try that layering method.
Friday was 19 of 33. 14 more to go. I am VERY itchy and rashy. Not in the center of my breast but all along the edges, which is interesting. I bought silk camis and I usually slather on the hydrocortisone along with Cerave lotion and Aquaphor. I do have major fatigue and it is worse by the end of the week so I nap a lot. Wishing you all a great weekend.
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Hello ladies! I just wanted to add that now I am also having issues with reflux!
My rads are lymph node area, whole breast and inter mammary nodes, so I get “cooked" where my esophagus is. Earlier I think someone posted that docs say reflux is not a side effect and dammit, yes it is. I have no doubt that's why I have it again. So, I'm back on the Prilosec, hopefully not for too long.
Another side effect and another pill.
[edited to add: Sorry that was all negative.
Faceforward-Glad to hear you are finished and doing well!
Egregious-I love the literal putting the treatments away and moving on. What a great way to get closure.
HPFULL-I'll have to get some camis. Besides, what a great way to reclaim some femininity! I'm sorry you're rashy. I am rashy above my breast right below the collarbone.
Have a great week all!]
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Hi guys, hope everyone was able to have a restful weekend. I did nothing Sat. and yesterday I attempted to go to church but made left after Sunday school bc I was feeling crummy. I came home and slept for 3 hours! Guess that's what my body needed! I am trying a new treatment in my underarm area that is very dark and sore. I had heard great things about manuka honey so I started slathering it on this weekend. I will let you know how it works! Today will be 21/30 so downhill stretch and a bonus no school day bc of presidents day.
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Hello ladies! Congrats to those of you that have finished since the last time I posted! I'm looking forward to joining you soon. I'm in the home stretch. I've completed my 16 whole breast treatments. I have 4 boost treatments left and then I am done - Friday is the day!! My breast looks like a lobster and I have the itchy rash. When I have to go out I wear a soft cami under a supportive bra (definitely no underwires) and that has helped me. At home I wear one of my husbands old soft, cotton t-shirts with no bra, or wear nothing waist up. Can't do that too often because I get cold, but it sure feels good! I know staying active helps as well. I've been walking my dog a couple of miles a day and going to stretch class at the Y. But I stayed in my jammies most of the day on Saturday and felt really well rested by yesterday.
FaceForward - it's good to read what you are experiencing post radiation. I know everyone is different but we can learn from each others journey. My husband and I fly to the West Coast late next week for a vacation with his family. I know I will still need to take my moisturizers with me. Just hoping fatigue isn't an issue! I am looking forward to life not being centered around cancer!!
egregious - Your words are always a breath of fresh air! Thanks for continuing to check in!
Gentle hugs to all of you!
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Just stopping by and wanted to thank each of you for your posts, and Rav for the tip of wearing a cotton t-shirt. My radiation is not until June, but I was worrying about being able to wear my bra so I can go to work. Best wishes to all of you and thank you for your advice and tips, they are most appreciated! Lisa
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This is an update on my post radiation for anyone who's curious about what to expect. Everyone is different but this is my experience so far. Today marks 1 full week since my last radiation session! 👏. Yes, the side effects do continue to increase but somehow just knowing I was done, made that seem not as daunting. During treatment, my breast, sternum, and underarm stayed swollen. Most days it was a lot. Some days it was slightly less but there was always some degree of swelling. During the last week, that has gradually decreased but it didn't happen in a straight line. More like 2 steps forward, 1.5 steps back, 1 step forward, etc. Sternum is still sore. The healing process has been pretty close to how a normal burn would heal. As I mentioned earlier, the nipple area (within the boost area) and underarm (no boosts) are still the most angry areas and are still painful. Even though I'm still hydrating & staying greased up, my skin is drier/rougher now as the top cells die off. The not so angry areas are sloughing & peeling in some areas and the new underlying skin is extremely tender, thin and bright pink. All of this combined with the severe itching still wakes me up off & on thru the night. Advil or Aleve helps a lot. Breast seems to be firming up and trying to find its new normal just like the rest of me. 😊Weird arm feelings are much better. Fatigue has gradually lifted and I feel much better overall. Just looking back at how far I've come, keeps me motivated to face what's still ahead. I also remind myself that fine wine is a process so I'm trying to be patient. The weather here is still crappy and has curtailed my outdoor time but I'm trying to do more inside exercises (not my fave). It's amazing how much better exercise makes me feel. I just prefer to do it in the form of outdoor activities.
The biggest improvement of all: Between the biopsy, MRI, surgery and radiation, my body has been subject to a lot of foreign substances. I'm sure stress has also played a part in this. Now, I feel like a heavyfog has lifted. It's a distinct feeling of having a clearer head. I didn't even realize how foggy I was until it lifted. Everything just feels clearer and easier now. I'm not sure if this is common or it's just me but I'm going to enjoy it while I can before I start my AI and bone meds. 😉
This is doable! Soldier On! 👍
Kkkk
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Rav: thanks for all the tips. I started today and your write up is very useful.
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There is a product available to you. discuss with your doctor. You will not be able to wear any normal or basic bra bought at retail. Cannot wear underwires or padded bras. You can wear the FDA approved Chabner XRT however. This bra is made to be worn during the actual radiation treatment. Google the product. Chabner Xrt. You cannot buy thru a retail method however. It is a medical device. But it is insurance covered.
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To radiate or not??? Looking for input.
I was diagnosed with DCIS Stage 0, ER+PR+ in November and had right breast lumpectomy on Dec 20,2018. My Oncologist did not think that hormone therapy was necessary (I'm 51 and in beginning of menopause) and radiation would be beneficial. I went in for the Rads consult, did the measurements set up my schedule for the next 6.5 weeks (32 treatments) and bailed at the last minute. I'm having a hard time getting a grip on this radiation thing. I've heard and read about so many stories. Many good and having an easy time with it and many not so good and having multiple issues. My concern is secondary cancer and it also affecting my heart. I know that it is fully my choice but I'd like to get some additional insight. My take on this is that I was diagnosed with a non invasive, stage zero cancer that was 5mm that was removed and if it returns I would just have a double mastectomy. I also think that sometime the doctor's are just suggesting what is protocol. The radiologist is selling me on the zero likelihood of radiation causing 2nd cancers, yet I'm his new customer. On the other hand, I would hate to not be fully treated and the Big C comes back. I guess I'm damned if I do and damned if I don't. Any insight or suggestions will be helpful.
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Hi everyone. Congrats to those who have finished! I started my radiation yesterday. Had my H&P early in the morning, then down to radiation to get zapped. That room was freezing! Had one nano second of terror as the machine started, but calmed myself and slowed my breathing and everything went fine. Had my 2nd treatment today. I worked half a day. Did 3 miles on the treadmill, showered and off to the cancer center. It’s a 45 min drive. Got my 2nd treatment, came home and a letter came in the mail. My insurance is saying my radiation is not necessary for my diagnosis and has denied coverage for it. Obviously I’ll be calling my RO first thing in the morning to see what can be done. Trying not to let myself get in too much of a tizzy tonight about this, but someone did not do their job at my RO’s office in getting approval prior to my starting treatments. Frustrating! Hope my RO can fix this.
Rose
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Since I started using the calendula/ aloe vera/hemp oil & lavender protocol I posted about earlier, my redness has gotten visibly better. Though not in pain, I was quite pink by treatment 5.
I am loving how these products feel an it seems to be working well.
I found organic, no-alcohol organic versions of these products. Aloe & Lavender from Mountain Rose Herbs; Calendula (in olive oil) from Herb Pharm.
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Prissy- congrats on the home stretch 🙌
Facefoward- thanks so much for the detailed post RADS update. I am looking forward to the fog lifting💕
Today was 20 of 33. I am super itchy and rash along the top portion of my breast. I can no longer wear just a bra so. I bought silk Camis that I put under a Coobie comfort bra. I am good in the morning walking my dog after a night of 11 plus hours of sleep and then by 6pm I am completely couch bound. I am just trying to go with it and listen to my body.
Hope you all have a great week! Hugs
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Heading in now for my first treatment. Wish me luck!
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I got my markups for my boosts next week and I'm a little nervous...guess I'm so "protective" of those mastectomy scars...did you find the boosts "hurt" worse that whole breasts?
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kec1972- how was it? So fast,right?? Strange to think so much is happening during those 30 seconds!
Jen2Mom- I was super nervous about the boosts and kind of had a mini freak out asking if it was going to hurt or cause rapid skin redness.....it was no different. The plate they add to the machine to just hit that one spot was sparkly and pretty and had my name on it....I kind of wanted to keep it....I'm weird. That area is still red and the rest of my breast is well on its way back to normal. I went 30 sessions, and I was very fortunate as far as side effects- red, a little itchy here and there.
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KerLyn, very fast! I am getting the “hypofractionated” treatment, so 16 then a 4 session boost to the tumor bed. I swear my breast hurts now though. Is that weird
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Congrats Keck on 1 down
Jen2Mom - You are in the home stretch! You got this!
I am sooooooo itchy....it kept me up last night. Today will be 21 out off 33. I see the light at the end of the tunnel!
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Hello everyone and congrats to all who have finished! I just wanted to check in, I had a one month post rads skin check with my nurses at the center. Just a quick check and they said everything looked good! I had stopped using my creams and noticed this past week that I still had some dry flaky skin along my mastectomy scar so I decided to just keep using the "my girls" cream until the jar is gone. I can actually tolerate a bra now for short periods!!! I am still wearing my Ana Ono camisole at work just because it is so comfy and I figure I am not ready for a 12 hour shift with a bra yet
My skin seems to have returned to normal as far color goes, except for one very small area of discoloration. My next appointment with the RO will be for a three month check. I wish everyone the best!
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Hi all, I am fairly new to these boards and this is my second post. I will be undergoing lumpectomy in March , but have to make a decision about how my radiation will be administered. I have a chance to do IORT at the time of surgery. This will place radiation into the area where tumor was found. It is done while I am still under anesthesia and after tumor is removed. This takes the place of 5 weeks of daily radiation. It has been around for several years in Europe. The only drawback is that studies show recurrence is 2% greater than with traditional weekly radiation. Opinions are greatly appreciated. Best wishes and prayers to all on these boards for tackling the challenges of treatment and recovery.
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Just checking in... I had my 11/33 today. 1/3 of my rads is behind me now. My arm and underarm area still hurt a little. I can feel that there is some healing tissue under the healthy looking skin in my under arm area. It is sensitive and achy.. My arm, on the other hand, has a dull pain from the shoulder to the wrist. It feels like a tugging sensation or a mixture of swelled tissue and overworked muscles kind of pain. My boob looks and feels okay for now. The redness subsided mostly. Recently I have developed what feels like arthritis pain in my hands, mostly on the radiated side but RO says that cannot be from rads. Maybe it is a late side effect from chemo; I don't know; but the pain interrupts my sleep most nights. I requested a PT referral from my RO and he said yes. I hope it will help.
On a positive note my eyebrows look almost normal now.
It has been a long journey for me since August. I cannot wait to feel well again.
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thanks for the update Dani. It’s good to know it gets better and to keep using cream once finished
Welcome Upstate. I don’t know I have abou t IROT as I wasn’t given that option. You will find lots of good info to make your decision on this site
Vivian- I am glad you got an order for PT. It really helped me so much and I hope it helps you too. It sounds like it has been a long journey for you. I hope things ease up for you soon.And yay for eyebrows 🙌
Today was 21/33. My skin is itchy and angry, and it burns so bad. Last night was the first night that it kept me up. I come home from RADs and slather in hydrocortisone and Cervae and then put on a silk cami and let my right breast hand out because I can’t stand to have fabric touching it. During the day it’s the silk cami under my bra which really helps. This too shall pas
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For people with pain: how long did the pain take to show up? I am at 9/28 and so far no pain. My pink happened fast but it dos not seem to be getting any worse.
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Mymomsgirl, thanks for your reply and input on the deep breath hold technique and the machine - it is helpful to know that you've made it through (Congratulations!) and that it was manageable. I had my first day yesterday and I will be using the machine throughout my treatment - snorkel mouthpiece, nose plugs and goggles. Yesterday there was a tech issue with the goggles so we tried it without and it was so much more difficult when I couldn't see the red line of me holding my breath. Once the issue was fixed I was able to use the goggles again and it made a big difference. The process is uncomfortable but at this point I'll do whatever it takes to get the best result. And now I will be very good at snorkeling...my husband and I are going to Antigua for a week after I'm done to celebrate and I think I'll need to give snorkeling a try.
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