Summer/Fall 2024 Radiation Support thread
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Hi "fellow and soon to be glowsticks" (from LOve4All)! A friend suggested I search for a chat group to ask about my radiation treatment options and I discovered you! I'm learning so much already, such as what a bralette is. Never heard of it! I'm 68, was diagnosed in July with invasive lobular AND DCIS on the left breast and had a lumpectomy 9/16 with clear margins and no malignancy in the sentinel nodes. I met with the RO where I live who recommended the "standard" 5x/week for 4 weeks. I then consulted with a RO at the hospital where I had my surgery, which is about 2 hours away, who said that instead of the usual regimen I could instead have 5 fractions given once a week for 5 weeks, or 5 fractions given over 1 week. The amount of radiation is about the same, but the side effects, at least for the one week and I'm done regimen, hits stronger and sooner. I'm wondering if anyone else has had any regimen other than the standard 20 days? Thanks for all the helpful information!
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I had the 5 fractions over a week. The radiation oncologist did not give me an option nor did she tell me that it was the equivalent to the old 15 treatments. I am glad I got it over with so I wouldn’t change that. I do feel that she glossed over the potential side effects-they are all very concerned about the skin side effects-of which I had almost none. I did however experience significant fatigue and very significant breast pain, which 3 weeks post, has still not resolved. That being said it appears that everyone’s reaction is different. Just don’t minimize it because it is “only 5”. Best wishes.
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I initially tried to get the SAVI catheter placement for the internal cavity radiation treatment at my lumpectomy site. I would have gone twice a day for 5 days of treatment. However my breast cavity was too healed so my breast surgeon couldn’t put in the catheter.
Today will be my week 4 second of four booster external radiation at my lumpectomy site. I am glad to be done with the whole breast radiation! My upper chest and under arm skin is red and irritated. The weekend after week 2 I broke out in blisters under my breast where my incision is and the stickers caused itching and redness. I was told this is common but usually happens after the booster treatments are complete. I didn’t stop radiation, even with the healing blisters. I had extreme fatigue the first two weeks, but the fatigue is not as bad now.
I became vigilant to use all the prescribed and recommended creams and gels from my collar bone, under arm and rib cage below my breast. I didn’t realize how far the breast tissue reached on my chest until the redness started. USE creams and apply at least 4 times a day. Forget the bra and deodorants, to irritating for the skin. Don’t use creams at least 4 hours before radiation too.
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@terilh Welcome and sorry you’re dealing with this crap! I was not a candidate for the fractionated radiation, so I had the 20 treatments (five days a week for four weeks). It’s up to your radiation oncologist to determine the best treatment plan for each individual patient. If you trust one doctor more than the other, then go with your gut and do what that one suggests.
You’re going to get the same amount of total radiation with fractionated plan as you would have with the twenty rounds, just in a shorter amount of time. I was given around 50 grays (short for gamma rays) to my entire breast, divided into 16 treatments. Then, four days of a targeted zap directly to the small area where they found the cancer. I didn’t have any lymph node involvement, so they didn’t radiate that area.
I didn’t have much redness until the last week of treatment and it was very mild (I’ve had worse sunburns!). Since everyone gets different amounts of total radiation based on their individual circumstances, it’s hard to compare our reactions to the radiation. I definitely have aches two weeks post treatment, but not unbearable. My shoulder aches and the ribs under by breast hurt, but like I said, not too bad. Annoying mostly.
Ask the technicians to show you where on your skin the radiation will be hitting. That way you can put lotion on those areas. Don’t bother getting the tattoos, either. I did, but they end up using markers and stickers anyway, so it was a waste. The appointments are super fast. They run a tight schedule, so I was in and out in five minutes every time. Totally doable! You got this!!
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To anyone who read my post about halfway through my treatment, I mentioned the extreme fatigue I was having. Turns out I just had a bug or something because I felt totally fine a few days later. I forgot to post that! Don’t want anyone to get too scared when they read it. I get tired easier now that I’ve had my radiation treatments completed, but it’s not bad. I can still do all the things I want to do in a day, I’m just extra tired by bedtime. I’m sure it’ll get better in another month or two.
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I am now 4 weeks post radiation rx. And continue to have significant breast pain. It is not red or inflamed (well maybe the nipple when you touch it) but hurts a lot. I have called the radiation oncologist twice, she prescribed some Tylenol 3s as I could not sleep at night. They seem more concerned about my skin -which is not the issue-than my pain. I just want to move on with my life and that does NOT include ongoing pain. Suggestions?
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My RO prescribed this. It has lidocaine with no alcohol in it. Lidocaine will numb the pain.
Miaderm also has a cream with lidocaine. You can buy it directly from the company or Amazon. I use the cream in picture several times a day.
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@ismacurler I had breast pain as well (unrelated to skin so creams would not help) which seemed to be pretty bad 2 or three weeks after radiation, but it has gone away. Mine was stabbing and would come and go but it did not keep me up at night. There were one or two nights where I remember being surprised at the pain and wondered why it was there, but it was NOT constant. Hopefully, the pain will abate, but I would persist in getting better answers from you RO.
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Thanks for the information about the Miaderm with lydocaine. My RO had recommended Miaderm and when I looked for it online I saw there also was the one with lidocaine, so I ended up buying both. I wasn't sure which one to get but thought I'd start with the regular and then once the sunburning starts I could use the other one. Thanks for the input!
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I’m due to start 40Gy of radiotherapy over 15 days. I had a mastectomy on my left breast in July.
I am concerned about radiation to my heart. Has anyone any advice / comments on this? They tell me to breathe in during the sessions to protect my heart. Doesn’t seem very scientific or effective to me.
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@foggydew I read there is validity to holding your breath during radiation because it pushes the rib cage away from the heart and lungs, therefore reducing the amount of radiation hitting those organs. When they do your mapping after the CT scan, I’m assuming they will put those extra millimeters into your calculated radiation plan. The rays are very specifically targeting certain areas (I had a perfect line of “sunburn” across my chest after radiation). By inhaling, you’re pushing the targeted breast tissue away from the heart and lungs, and that’s a good thing!
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hi All! I completed my radiation now almost two weeks ago. All good except this one burn that hurts and appears to now be seeping a little. I hope it’s not infected. Anyone else suffering from burns? I’ve been putting aquafor on it and sometimes Vaseline. Wishing everyone the best during and after radiation!
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@ebfitzy I highly recommend Buiron Calendula cream.
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@tigglewinkle @ebfitzy I used Boiron calendula cream also, but I didn’t have an oozing, blistered burn. Just don’t want it to get infected!
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@ebfitzy I got a similar burn under my arm. My RO prescribed silver sulfadiazene cream to apply 3x daily and it cleared it up over about a week. She said to be extra careful to keep it clean to avoid infection. She also said I could apply Aquafor on top of the cream.
One small thing to note — Silver Sulfadiazene cream can stain your clothes (sort-of a silvery grey) so I was careful to wear things I didn't mind getting dirty. I was able to wash it out using stain remover.
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If you are allergic to Sulfa drug antibiotics, (sulfonamides), Silver Sulfadiazene should not be used. I was almost prescribed Silver Sulfadiazene and luckily I reminded my RO of my allergic reaction to sulfa.
I highly recommend aloe gel, it helped to heal and soothe my blisters and red rash.
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Today was my last day of radiation. I was so happy to ring the end of treatment bell in the clinic and cried in my car. Everyone clapped and a gave such support for me as I walked out of office. For those just starting or in treatment, you got this!!! 🙏
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Yes, i understand it may be valid to hold your breath. 15 years ago i had radiation and I would have thought they’d have some more advanced medical technique to protecting one’s heart by now. Its almost laughable that this is all we have.
I am going to be radiated directly onto the chest ad no breast now, so pretty concerned about the possible damage to heart and lungs if all I have to protect the organs is holding my breath.
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as I turns out it appears that I am developing lymphedema of my breast. Really pissed off over this as I did EVERYTHING I was supposed to do post lumpectomy/balancing reduction and lift. Fortunately I had an appointment with my surgeon who was royally pissed that all that had been done was to prescribe me T3 without even looking at my breast. Why does this have to happen? I was told this would be a “blip”, but if you have to have chronic issues and discomfort \pain AND take medication that makes you feel like crap, it is no FrKN “blip”!
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I find this ladies channel very good. She healed her Lymphedema.
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sorry, but where is the link?
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Apologies https://youtube.com/@breast-cancer-rehab?si=kuOWk576dZLyuMRE
https://youtube.com/@breast-cancer-rehab?si=39jt0shvYxg4Llia
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@dmataraz1 I had my consultation with the radiation oncologist today. He is recommending 18 sessions in the prone position. I go for mapping on Tuesday and will start radiation within a couple weeks. I read that you had your treatment in the prone position. I’m a little leery about lying on my stomach. How did it go for you? Any tips would be appreciated. Also, if anyone else has had radiation in the prone position I would be interested in hearing from you. Thank you!
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I would have far preferred a prone position. I had to lie on my back, and hold my breath to protect my heart. In a prone position, it is not in danger.
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@cbee53 I was glad to be in the prone position. It was similar to having my breast biopsy. I held onto two hand supports above my head, breast in an open cavity in the support board, and a pillow supporting my feet. You can just breathe naturally as your face pillow is like a massage pillow. I still held my breath to keep my heart and lungs pulled up in my chest. I had two zaps ⚡️ of radiation that lasted about 20 seconds each and I was done.
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@dmataraz1 Thank you for your response! Your description of the process makes me feel more at ease. Wishing you all the best in your recovery.
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Hi. On day 5 of 33 treatments and am struggling with DIBH or breath hold for l breast ca to protect the heart. Trying to practice at home. Finding the rad techs not that helpful in coaching. Feels like it is just an assembly line. Can’t wait to be done .
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