Starting Radiation in May 2017
Comments
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LAW, are you laying on your back? Mine is done with my lying on my stomach and I don't have to hold my breath. The radiation comes in from both sides with my boob going through a U shaped cutout on the table. So my heart and lungs aren't involved in radiation
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Yes I am laying on my back. I asked about laying on my stomach. She said it doesn't work for all people to protect the heart - for some the heart falls forward when you do that, and for some you can't get the full area that needs radiation. It all depends on heart location and body shape. For me the best way to protect my heart is the deep breath method. I didn't know that everyone's hearts are not in the same exact place until I went through this.
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I finished my first treatment today!!! My 45 minute appointment turned into 2 hours because my RO was not happy with how the X-rays were not matching the physicist plan. My breast is sore and tingly. Is that normal?? I thought I would get through at least a week before any discomfort!! Now I'm worried about how much worse things are going to get ... my visits with the RO are on Mondays.... Did anyone have pain, tingling or warmth after one visit? I used Miaderm right afterwards and again a few hours later.
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Here's another update: I just got home from the MO. He's on board with my doing the radiation now and then will put me on an AI (he usually prescribes Arimidex). He did say that at my age, I could skip the radiation but because I have both IDC and DCIS, he'd recommend going ahead with the radiation. He also said he couldn't believe I'm 70 - that I look like I'm in my 50s! (Brownie points for him!) So I just called the RO and told them to go ahead and submit the authorization (which should take about a week). Looks like within the next two weeks I'll start this next leg of the adventure.
Both the RO and MO told me I'm healing quickly and very nicely (good to hear). But after two days in a row of people poking at me, I'm pretty sore (not that I wasn't already).
Hope everyone is doing well this lovely May afternoon. It's very warm here in the SoCal mountains!
MJ
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LAW193, I didn't know that! In fact, when I asked she said MOST people at Mayo where I'm going have it done on their stomachs. I kind of assumed those that weren't was because of shoulder issues in having their arms grasp those poles that are in front of my head. I guess I've read on the April starting topic of some that had this issue and figured that was the reason. That is strange about the heart; I sure didn't know that either.
GetBusyLiving, I have had just 2 treatments and can't tell any difference yet. I see the nurse and RO on Tuesday and both told me today that I shouldn't see any changes before the end of next week. But, as I learned during chemo, everyone seems to have different side effects.
I was surprised to hear that I have a choice about the tattoos. I can opt not to have them. The radiation techs told me yesterday that we'd discuss them next week because as people relax more, the placement could change. The dr. told me today that it was my choice because a lot of people don't want them. So I have to think about this. I am leaning towards not having them but we live in FL and have a pool and that's would eliminate me swimming until this is over which will be mid June. On the other hand, I can't say that I need a permanent reminder of this ordeal
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BTW - the RO nurse called me this afternoon to go over the next steps. I asked her about the dental cleaning and she said that was fine.
MJ
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My Rad Treatment Center only does the "Sharpie" type markings with plastic disks over. Started out with 6 markings & when boosts were setup received 4 more. Some were crosses, some were X, some were X with a circle around & a couple dots done for boosts. Looked a bit like a treasure map.
Rads were left side, holding those blasted handles with both arms above head, head turned to the right & using breath hold technique. When I initially asked about "face down", RO advised this was primarily used for women with "pendulous" breasts. At setup, dry run & when they took additional films to check things, left shoulder was painful due to holding in position longer. Otherwise, was OK. 4 boosts did not take as long as the 16 regular treatments.
Had minimal skin effects and no burning to my very fair skin (natural redhead, once upon a time). Hope that everyone is receiving some guidance re: how to use creams, etc. to help prevent SEs. Am convinced that it helped me. If anyone wants to know more, please ask. Have posted a number of "hints" on the Feb, Mar & April 2017 Rad threads, but happy to reiterate here.
Will be checking this thread & lending support. I went into Rads being extremely fearful & came out OK. You can all do this!
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Celia, I for one would love to have you reiterate! My RO told me to use aloe vera gel; a friend gave me a tube of the lotion she used several years ago. She had the same RO who approved it; I'll ask if it's OK.
MJ
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Helllo - I am starting radiation today. 19 sessions plus 3 boosts. Is anyone using silicon gel strips to reduce scaring during radiation? My surgeon said it was fine but the ROs seem to have less experience with it. To the extent there is a concern it seems to be with affect on the skin, not effectiveness of the treatment. Appreciate anyone's experience. Thanks
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Dry run and first treatment are Friday! I have my Mepitel strips but am a little concerned since tech asked me yesterday how they are applied. I have a feeling that it's going to take them longer than expected for them to apply them Friday!
KH17, I'm not sure if what you're calling silicone strips are the same thing that I'm talking about. Mine are applied to protect the skin from the radiation--not really for scarring.
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@Lexicoe, thanks for replying. Mine are something different. These are to reduce scarring post surgery. I had bilateral repositioning/reduction done at the same time as my lumpectomy so I would not have to go back later, but as a result have more scar area. Since I think it's less common still to do combined surgery, as I did, it seems there is less experience with using these during radiation.
No one has mentioned the protection strips you are using to me, just creams etc.
Good luck with everything!
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Following is a compilation of my experiences as well as those of many other topic responders. Hope anyone paraphrased or parenthetically referred to is ok with sharing. Apologies for any misinterpretation, spelling errors, etc. DISCLAIMER: I AM NOT A MEDICAL PROFESSIONAL. INFO INCLUDED BELOW IS IN NO WAY MEANT TO REPLACE PROFESSIONAL MEDICAL OPINIONS.
Shaving/Deodorant - In General (Seems to Vary)
- Don't shave during treatment (rads may destroy hair follicles anyway), of if you must, use electric razor (both during rads & for life - to prevent lymphedema)
- Deodorant – Aluminum free (like Tom's of Maine), cornstarch, Gold Bond powder (also for skin folds) or none at all
Creams, Skin Soothers, Etc.
Overview
- Watch for creams/skin soothers containing alcohol, due to its drying effect on skin.
- Try to use creams/skin soothers starting asap, rather than waiting until you have pain.
- IMPORTANT! Please discuss with your RO or Rad Nurse before using. In general, nothing on skin 4 hours before treatment.
- Be your own advocate! Make sure RO or Rad Nurse recommends something (NOTE: Wide divergence between what may or may not be recommended). Try to use as often as possible & if you start to have skin issues - speak up & DEMAND something for relief.
- Timing & nature of skin effects can vary widely & seem a bit without rhyme or reason (e.g., I sunburn very easily, yet had no issues, but have heard from other, including an office colleague, of those with darker skin who had issues). Several topic responders (including me) were told skin effects may not present themselves until after 10th treatment (2nd week) & can "peak" after treatment ends.
In Alpha Order (Lots of things out there, have tried to include ones that seemed to work for various topic responders)
- A&D Ointment - At night only. Use old night gowns – greasy, sticky stuff. Have to shower in mornings to get it off, or it would still be there for treatments.
- Aloe Vera Gel – Naturopathic, find one as "pure" as possible (Amazon, Whole Foods, etc.).
- Aquaphor (Personal RO Recommended, not used, but others have used) – Greasy, Petrolatum Based (like Vaseline) - RO advised to use only at night, wear an old shirt over & be sure to "wash off" next day.
- Calendula Gel (Ruby3813, used before work) - Homeopathic, Paraben-free, Boiron Brand (Amazon, Whole Foods, or similar)
- Essential Oils (Personally used) - Special recipe blended by my aromatherapist (therapeutic grade german chamomile, roman chamomile, frankincense, mellaleuca a/k/a tea tree oil & lavender essential oils) mixed in an organic sweet almond oil base. Applied before bed to radiation field & massaged into soles of feet.
- Green Tea Spray (Ruby3813's RO Recommended) – Spraying in the mornings, at noon, then go for treatment, then spray again at night (you can have the green tea on your skin during the treatment). I believe "recipe" is two green tea bags to one cup of water, let steep, let cool, put in sprayer bottle & keep in fridge (no preservatives, so have to pour out the old & re-brew) – I also saw this somewhere on the internet.
- Lansinoh (Loveyt222) – 100% pure Lanolin, used for breastfeeding mother, which she actually used 20 years ago.Asked RO why & she took part in a study that had excellent results. Applied 2x daily. It is VERY thick – can run tube under hot water to thin out so it spreads easier. Developed mild redness by end of 3rd week & continued to use until 2 weeks post treatment.
- Lidocaine (Personally used, RO Prescribed) – Soothing when nipple, lumpectomy/SNB scars & radiated areas were ouchy.
- Lindi Skin Cooling Roller & Soothing Balm Website:http://www.lindiskin.com/shop/by-concern/radiation... - Person who used bought 2 cooler rolls, but felt 1 should be enough – Can be cut to size and also re-used. Balm not greasy at all.
- Mepitel (Wildplaces) – Silicone like product, which apparently may protect skin from blistering - stays on - you are meant to try and not get it wet. Apparently, it is a New Zealand product and provided you manage to keep it on you have good results.
http://www.molnlycke.com/news-media/press-releases/a-world-first-preventing-skin-reactions-during-radiation-therapy/#close - Miaderm (Personally used, RO Recommended) – Developed by ROs – More info available on internet – I used 4x daily, about a tube a week – Very smooth, spreads easily, non-greasy, no unpleasant smell – Worked extremely well on my very fair skin – Not cheap, at between $32-$36 a tube on Amazon (free Prime shipping), but was willing to pay whatever to prevent skin side effects. Continued to use for 3 weeks post treatment. RO and Rad Nurse both impressed how well skin did.
- Mometasone Furoate 1% (Personally used & Ruby3813 also used, before bed) - RO Prescribed, steroid cream – Good for "rash", irritation – Scientific articles discuss its benefits.
- Silvadene (WenchLori used) – Prescription cream, for more severe skin effects, along with large Telfa pads & was recommended to get some white t-shirts to wear.
- Slings – See website: Lots to Live For – Adjustable single slings, double slings & pads to help "cushion" area under breast from rubbing against skin – I used single one & it seemed to help – May not work for those with very large, pendulous breasts.
- Some other things: Emu Oil (smelly); Castor Oil (my RO recommended in lieu of Aquaphor, very greasy, did not use); and Vanicream Moisturizing Skin Cream (free of dyes, lanolin, fragrance, parabens & formaldehyde)
Side Effects, Etc. – Discuss with your RO or Rad Nurse, if a concern!
- Cording & Lymphedema (ChiSandy has excellent info on this) – Ask to see experienced Physical Therapist
- Zingers – Feels like when you hit your elbow's "funny bone" – Zings through breast and then gone.BS & RO both advised: normal, related to nerves healing, would likely continue for awhile and dissipate over time.
- Some nerve pain in underarm (SNB area) and breast tenderness
- Fatigue, Loss of Appetite – RO advised before rads started that these were frequent side effects - Experienced both & they were worse for 2-3 weeks after rads ended and then began to get better (I was/am carrying a few extra pounds so loss of appetite was actually welcome).
- Possibly, Nausea
Scheduling, Positioning, Deep Breath Hold Technique, Radiation Room, Dosage, Etc.
- Scheduling – Figure out what works best for where your treatment center is located vis-à-vis home & if applicable, work. Some people like before work, some after, and some are able to be off work during treatment. I did after work, so my mind was focused on other things during the day - center was enroute to, & 6 minutes from home & I liked going home to apply creams, have dinner, etc. afterward. At first, I did not get my optimum schedule, but after the 1st week, they were able to accommodate. Sometimes your treatments may be delayed (probably due to some other patient undergoing treatment) or take longer (like when you see RO, extra films taken, setup for boosts, etc.).
- Positioning - Keeping arms overhead, above head & holding "posts" while head turned to one side or the other can be uncomfortable, especially for longer sessions. My center did a "mold" at the 1st planning appointment to help position body in same place each time & also practiced deep breath hold technique (had left side radiation). It may be possible to have Rad Techs (RT) re-arrange arm rests/handles a little if you are feeling discomfort – Just speak up & be your own advocate!
- Deep Breath Hold Technique – RTs monitor you to check if you have held too long & are about to burst & can tell when breath hold is deep enough to move heart/lungs as far as possible from beam path.
- Radiation Room – Some have music, which can be calming. Mine did and also had a lovely mural on the wall as you enter room as well as "pinpoints of light", like "stars" above the machine & always offered a warm blanket. Some offer gowns to change into before treatment – please be aware that at some point the gown may need to be moved/removed & your breast could be exposed – seems to depend on where the radiation fields are.
- RTs – Except for my final 5 visits, all were female – very understanding & comforting. Ditto for the 1 male RT - very professional & had been doing treatments longer than the females, so this did not bother me.
- Dosage – Like everything else BC, varies widely, case-by-case, depending on a number of factors, surgery type, tumor pathology, stage, grade, node involvement, etc. Mine: 16 whole breast + 4 boosts to tumor bed, total 20. Some topic responders were 25 - 30 treatments and consulted two ROs who both said the same thing - was relieved it was only 20. Saw dosage info at an RO visit: 4,256 centiGrays total for the 16 treatments + 1,000 centiGrays for 4 boosts, total 5,256. Came across something about "typical" dosage: 100-200 rads or centiGrays each, 4,000-5,000 centiGrays over 5 weeks (5 treatments per week) plus an additional 1,000-2,000 centiGrays for 1 week (5 treatments) as a boost.
- Boosts – For those who had lumpectomy – Directed at tumor bed (where tumor removed during lumpectomy). My experience: took much less time that 16 "regular" rads & gave the rest of the radiated area a break.
Stress Relief, Calming Thoughts
- Bach Rescue Pearls – Stress relief, Homeopathic - No issues with drowsiness/driving - dissolvable capsules, non-habit forming, alcohol free - Very small, put one under your tongue to dissolve – These are a my "go to" stress reliever (Whole Foods or similar).
- Mindfulness Mantras (Adapted from Annoyingboob's recommendation) – "May you be safe and free from suffering, May you be as happy and healthy as you can be, May you have ease of suffering." Also, a free app, called "insight timer" or: think about things you love and visualize and list them during your treatment (I love bunnies, puppies, hugs, chocolate, the ocean, the beach, the mountains, etc.)
General Comfort
- Worked during rads (M-Fri) & managed to be "business casual". Did not want to be bouncy, so wore cotton tank tops with a very stretched out bra over tank, underneath whatever top I wore.
- Wore a tank to bed & used inexpensive white cotton mens' undershirts, placed over a pillow to protect pillowcase from goopy creams, etc., then slept with underarm laying across pillow so it did not rub against body.
- Little pillow provided by Nurse Navigator for use under seat belt and also in armpit post-surgery - Very handy for shielding underarm & SNB area from skin to skin contact.
Whew, that's it for now. Hope this helps. Healing thoughts & gentle hugs.
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Celia, thanks for the comprehensive list!
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Wow, Celia - that is an amazing presentation of helpful information. I so appreciate your taking the time to do this.
MJ
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Law193, my RO told me at first meeting that it depends how your heart 'falls' if you are a candidate for laying on abd. During the sim they said my heart was ok and didn't fall forward.
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Lexicoe & Tappermom383 - You are most welcome.
Lexicoe - Lucky you to live in Charleston, SC. We missed our annual late spring visit to Isle of Palms this year. Love the Low Country food, nature, beaches, Mt. Pleasant, Sullivan's Island & of course, the charms of town. Maybe next time we are there, we could arrange a rendezvous.
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Celia that list is amazing. I'm going to keep going back to it as my radiation continues. Today was day three and I'm feeling a little sunburned type sensitivity but maybe it's all in my head - there is no visible redness ye
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Celia, for sure--let me know when you're coming next time! I'm so bummed at the thought of missing this early beach season, which isn't my favorite! Been trying to figure out if maybe I could still swim in the ocean a littleduring radiation treatments. I asked RO and she said "sure" but my mom said she was being sarcastic. So I may just ask again...
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I just started on Monday. 2/16 down. I cried for two hours after the first one. It's been 3 months since diagnosis and the flood gates decided to open at the first radiation treatment. Go figure.
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RoseRN1 yes I was told the same thing.I'm just going to trust that it was best for me to be on my back with the deep inspiration breath hold.
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AII5 - I teared up when i rang the bell on Tuesday. We're going through a lot physically and emotionally. During my treatments I got to know an older woman whose husband was there for radiation.She gifted me a lovely scarf she made. The kindness of others warms my heart in ways I can't express.
Sending healing and encouraging thoughts to all. You can do this!
Gentle hugs.
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All5 and Butterfly1234, I started yesterday (1/19) and felt similarly. I think it was because I was just starting to feel like myself again and then there you are reminded you are still in it. I'm trying to focus on the fact of how lucky we are to live in a time with so much available to us. And, yet, of course it's still hard. Thanks for all the support & advice here.
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GetBusyLiving,I'm feeling tingling and warmth on each visit. I did 4/16 today and I feel everything! Meet with RO tomorrow and I will ask if that is a bad sign.
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GetBusyLiving,I'm feeling tingling and warmth on each visit. I did 4/16 today and I feel everything! Meet with RO tomorrow and I will ask if that is a bad sign.
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kh17, i did the same surgery as you and had bilateral repositioning 4 weeks ago but my PS said only use the silicone strips on the side I'm not radiating until after radiation is complete. She said the radiation itself will be good for the scars because radiation is used as a treatment for keloids. Made sense to me.
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@all15 thank you for sharing your information. I met with my RO today & came to the same decision. I will do the strips on the untreated side for now and depending on healing resume with the other side after radiation. Good luck with everything
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Celia - thanks for adding the green tea spray that my RO recommended. It seems to have worked like a charm.
Also, I just wanted to mention that neither my RO nor any radiation tech ever told me to stop wearing deodorant. I was radiated on the right breast. Having said that, I didn't usually wear it anyway on that side since I was using the green tea spray and Mometasone cream in the armpit area.
My radiation center also used the "molds" so I didn't have to hold onto handles like at some places. And I didn't have to hold my breath since I wasn't being treated on the heart side.
You can co this, ladies!
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Hi all, I just started radiation this week. I have had 2/33. It seems okay, I got the tattoos. They look like dark freckles on my skin. I lay on my back with my arms over my head. I have the mold around my body. I don't have to worry about my heart because I am being treated on my right side. I am not to uncomfortable. They expose only my right breast and always tell me when they are going to touch me. They seem very sensitive about this to me. I am a little worried about lymphodema because I am missing 16 lymph nodes on that side. I have not had any swelling yet. I hope to keep it that way. Anyone get it from radiation?
Radiation today got cancelled because of thunderstorms last night took out the machine. yikes! I usually don't post much but read daily. Healing prayers to everyone.
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Looks like I will be joining you ladies. After a long complex drama with BC, maybe things are finally moving forward.
Looking forward to sharing our journey.
Sherry
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marigoldgirl- I had #15 out of 33 treatments today and so far so good. I had 14 nodes removed and so far no issues. My lymphedema therapist gave me exercises and massage techniques to do daily, but honestly I only do them 3-4 times weekly. I have mild sunburn like sensations, but my skin looks fine. I also have some soreness inside my breast and armpit. I am using Miaderm 3-4 times daily. I wish you the best!
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