Anyone else have pain after first whole breast radiation?
Hi,!Lurker, first time poster.
I was diagnosed with IDC at the end of March. Turns out, I'd had DCIS for two years and the womencare center didn't choose to biopsy it until it became invasive this year.
We are going with Tamoxifen and radiation after surgery. I took extra long to heal after surgery.
I am epically sensitive to sunlight. I would regularly get sun poisoning as a child (throwing up in left outfield by the fence everytime I played little league baseball, throwing up at family beach parties, etc), I burn in about fifteen minutes, my skin peels if I sit in front of a window on a sunny day. I also had adrenal failure, and had to take hydrocortisone pills for about seven years (recovered two years ago, skin did thin, do have broken capillaries and spider veins). I have also had regular doses of doxycycline for various illnesses, but that was a while ago.
Suffice it to say, I am sensitive to the sun.
I have a rad onc who is well known for being, shall we say, impatient. She told me, almost offended by my ignorance, that sun sensitivity and radiation treatment sensitivity is apples and oranges. That there is no correlation.
But on the day of my first treatment (whole right breast, not partial)- the nurse told me that if I burn easily, I will likely have a harder time with radiation.
Sigh.
Regardless, I got my first treatment done.
My question here is: did anyone else have *any* side effects from their first treatment? Am I alone here? I was told I wouldn't feel anything but fatigue for the first five days. I was surprised by about an hour of nausea about two hours after I got home. My breast became tender as the evening progressed, like I had a mild sunburn. I used the aloe gel and some CamWell Herb to Soothe (anyone have experience with it?). I also found that I was coughing and woke up a few times in the night to clear my throat of mucus-- not a common thing for me. However, it is horribly humid here. The breast is not as sore this morning, just slightly achy (like it was when I was healing, which I might not have finished entirely before radiation).
Does it get worse? Do you get used to it? If I am a little sore on the first treatment, and it is accumulative, am I in big trouble? Any magical ointment or lotion to suggest?
Thanks in advance.
Comments
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Hi,
I also just lurk here, but wanted to reply to your post with some encouragement since you sound like my twin as I had very similar concerns after the first radiation
My RO also said I would start feeling some ses after 2 -3 weeks, not sooner, but I felt sunburnt already the first evening and had also slight nausea for an hour or so (only the 1st evening). The breast got already slightly pink. 2nd radiation came with stronger 'sunburn' and also some pain in the breast and nipple. As I was supposed to receive 33 treatments (25+8 boosts, and they use bolus), I was extremely worried how to survive through it all having se's so early on and as they are said to be accumulative. Also read on here about people having had already 10 or more radiations and turning pink ONLY then, which made me even more worried. But strangely enough after the first two weeks the overall discomfort and burning sensation kind of reached 'plateau' and did not get any stronger, quite contrary - yesterday I finished 25th whole breast radiation and today had my 1st boost, and although my breast looks seriously scary - dark red/purple/brown, I do not have almost any other skin or breast discomfort except sligh itchiness in the area closest to collarbone and actually feel much better than during the first or second week. Maybe I just got used to it? But whatever works So generally so far so good, except the cough which I also developed and which is a bit annoying. So based on my experience I guess that early ses do not necessarily mean more ses alltogether (unless my remaining 7 boosts prove me totally wrong 
) As to the creams - I am in Europe (but not UK), so cream supply could be different. The hospital provided me with a big bottle of Burn Gel (by Water-Jel Technologies, US) which I find really helpful, and I also use aquafor for moisturising.
Just hang in there and you'll get through it
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Hi Calli - You're not alone. I do not have sun issues like you do...wow that is quite the curve ball you've dealt with for your whole life! I'm surprised that your team didn't take that more into acct, even if sun vs RADs is technically different, they both affect your skin. SMH.
I was also told "no sympx will appear for at least a week" blah blah blah. I know my body. I know my Chronic Illnesses and the problems I've been dxd with regarding my Immune System since I was 13. Suffice it to say, I sufferred through RADs. First day I had nausea, throwing up, dizziness, breast heaviness, redness, and aching. Those symxs didn't last long those first days (a few hrs at most) but they were there from treatment one. My RO said my nausea was not from RADs. However, how can they say that when nothing else changed in my daily routine other than RADs? That it only happened AFTER RADs sessions? They couldn't. I quickly learned to take my Zofran before RADs to beat the nausea to the punch. And despite their unbelief of the RADs causing my nausea, they did give me a refill of my Zofran when I asked for it. Hmmm.
IMP just because doctors know "in general" how the majority of the population will react to RADs, no one can ever say "x y z will happen for you such and such a day". Please continue to speak up as things happen and insist on them hearing you about pains, burns, etc that you are feeling. They have treatments that can help you as symptoms get worse. Boob Lasagna saved me during those last 2 weeks. My journey, if you care to read is here in this RADs thread: Radiation October 2018 and here too: November 2018 Starting Radiation .
I highly suggest staying hydrated, moisturizing day and night with Calendula or Miaderm or whatever specific creams they give you. Move when you can within your own limits and rest when you need to.
Hang in there and keep speaking up. No matter what, you're not alone....we're here with you. Hugs.
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They told me I would "turn pink" three weeks out. I turned pink the first day. I have zero sensitivity to the sun. I think it's a crapshoot what side effects you will have, not to be based on sun sensitivity. After having gone through chemo and their Chemo Teach, I told the radiology department they needed Radiation Teach, not the "you'll turn pink" crap I heard after my first blast. I had pain from Day 1 and by Day 7 was ready to go to the emergency room because I felt like I was having a heart attack. I had costochondritis, which "only 1% of people get" until you talk to 10 other people, and 8 of them had it!
So, short answer, yes, I had pain the first day. Feel free to switch up doctors as well. A large part of me wishes I had.
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I guess everyone is different so I"ll share what my RO told me. She also said that sun exposure and radiation are two completely different things. She took one look at me and said I'd likely do very well precisely because I am very pale. In sun, I've always turned pink first, then tan, and the tan fades quickly. That's pretty much what happened with rads too. I didn't turn pink at all until the last couple of sessions (I had 16), turned tanned within a day, and is now almost faded away. My nipple and scars got a smidge darker, which she says will also go away in time. For what it's worth, I used aloe during the day and calendula at night.
I didn't have pain the first day, but I did have mild nausea. It went away quickly and didn't happen again, so I wrote it off as nerves, getting up to fast from the table, blue moon, something...
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Thank you Avei, Spoonie77, DiagnosisDisruption, and mom2bunky. It is such a relief to know you're out there and sharing your stories. I don't have a lot of support, and it's great to know that others are sharing my experience.
Avei, I am glad you don't have any suffering, but I have to say, the discoloration of your skin is a little scary. I am glad that the blatant discomfort fades. I am also worried about your cough. Make sure you track that for a while after treatment in case you get the radiation pneumonia that's common a few months to a year after treatment (left untreated it can, heck who are we kidding, will leave scars on your lung). Please let me know if the cough fades over time. That would be a relief. At least you aren't suffering, and that's a big deal. My nerve endings have always been pretty accurate about danger, so maybe yours are too.
Spoonie, I ordered the Miaderm from Amazon, it'll be here day after tomorrow. Thank you so much for the tip. I have allergies but I am willing to try it. That'll be my sixth treatment. I have been using aloe gel after each treatment, like immediately after. I go to the bathroom, still in my gown, rinse my breast (my Irish grandmother always said to wash the sun off our skin to avoid burns), then slather it with aloe. I have been using a digital thermometer (like you use for checking pan temps). My irradiated breast is always a degree to a degree and a half hotter than my non-irradiated one. I also have the CamWell cream, but it's only .63 oz per tube, and really expensive. It also tints your skin yellow for a while. Not sure which ingredient does that. I have only been using the Aloe consistently up to this point.
I do have a little concern on that end- after using the CamWell cream this morning, to see if it would bring the breast temp down any, it did cause a little zit to start on my breast. I am worried that a) I am allergic to it, b) any sores on the breast at the time of treatment will be the cause of issues moving forward.
-Anyone have a zit, sore, scratch on the breast during treatment that caused no issue?
My nausea, like Avei and mom2bunky, was just the first day, and a few hours at most. I haven't had it since, but I wouldn't be surprised if it returns as radiation damage accumulates. I'm sorry Spoonie, that you had to go through that. Ouch!
DiagnosisDisruption, I don't have a lot of choices when it comes to doctors in this area, but I will definitely keep it in mind. A friend of mine had a good experience with a rad onc in the area just a year or two ago. I might ask for a consult if my insurance will cover it. And-- oh man, costochondritis?! I will be on the lookout for it. It sounds bad, I hope you were able to recover (and btw, *how* did you recover if you did so).
Mom2bunky, I am glad you got through your treatments so well. I am going to hope I have your experience. I do think that I need to stop with my CamWell, do you know what candula cream you used? My problem is I am allergic to *corn* of all things, and it is a problem. I get sores (like I just did with the CamWell) and they don't go away. CamWell does have glycerin in it, which can be derived from corn. It makes things like chemo, surgery, even dental work practically impossible. Did you know that internal sutures are made of corn? So none of those for me...
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Re: your nausea - I felt "car sick" on the way home from my very first treatment. I had a few treatments without nausea and then started having a little nausea off & on every day. Seems to happen a couple of hours after eating or sometimes right after treatment. I usually don't have nausea in the mornings. It didn't affect what I ate at all. The good news is that the nausea didn't get worse until after maybe treatment 16 of 20. Even now (last treatment today), the nausea feels better if I just eat a little bit. One day I made croissant rolls and ate those because I felt really nauseous and that made it go away.
I sunburn pretty easily. I've been mostly staying out of the sun but have been outside some w/ a t-shirt on and can't tell that I am sensitive to sun in the radiated area.
Be sure to apply aloe vera & lotion of some kind at least three times per day and to drink lots of water.
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Sure Calliop3; and thank you.
I used this calendula.
https://www.amazon.com/gp/product/B0033MG6UK/ref=ppx_yo_dt_b_asin_title_o09_s00?ie=UTF8&th=1
And this aloe:
https://www.amazon.com/gp/product/B07JBJWTT3/ref=ppx_yo_dt_b_asin_title_o01_s01?ie=UTF8&th=1
That little bottle of calendula is still half full. But I only used it at night. A little goes a long way and my RO was clear to only use a thin layer of anything. I went through 1 1/2 bottles of the aloe. I'm continuing to use both for a couple of weeks as insurance.
I had no idea internal sutures are made from corn! Wow. I am fortunate to have neither allergies nor sensitive skin. But, I've always been careful about what I put on it and now more than ever. The above were the "purest" versions I could find. They worked well for me.
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I used Miaderm during radiation and I'm using it now, nearly four weeks out. I've liked it because it's not slimy and it doesn't stink. My skin is doing pretty well, still peeling on the nipple and the scar's a bit annoyed. I've also got the weird skin bumps on my back near my armpit on the radiation side. Best guess is I'm pretty thin and I cooked right through.
The fatigue takes a while to go away. My RO said it can be 4 to 6 months, which while depressing I'd still rather know. That way I don't beat myself up about it. None of it stopped me running--I ran nearly 60 miles during radiation treatments and I'm in training for a race now. Take that, cancer.
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That's wonderful edj3. I haven't been running. I want to start up again soon, but right now, in this heat, just walking makes me dizzy. In a week or two, and if the weather is cooler, I'll try. If not I'll wait till the Fall and just walk longer distances, or ride the bike inside. I'm also a little worried about the bouncing with running. Were you okay with that? Did you just get good new sport bras? I'm a smaller cup size after surgery so in theory, that situation should be an improvement. But I'm nervous about it.
Just to also say that the products I used were also not at all slimey. The aloe absorbed almost immediately and the calendula didn't stick to my nightgown or anything. My skin is very dry though so it most like just went "schluuuurp!"
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LOL at the schluuuuuuuurp! My skin still isn't dry, even though I'm done w/ menopause.
I've got two really good Brooks running bras that have great compression. In fact, they're so good I used them after the lumpectomy a couple of times when the bras I got for post-surgery were dirty. They're great. And yes, that's essential. I'm a weird size (30DD) so finding a bra that fits and holds things still was hard. I hope these bras never wear out.
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Thanks! I will look into Brooks.
I was a 30DD or a 32D (depending on brand) prior to surgery. I've not been fitted for new bras yet. The plastic surgeon believes I am a small C or a large B now. We shall see.
Alas, I have always had dry skin. But nothing good moisturizers can't handle.
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Calli0p3, glad to read that your nausea has not returned, and hope you are doing quite ok all considered. I have done 3 boosts, 5 to go, and have to say I find them a bit more ouchy, or it might also be that I finally feel the accumulative effect of radiation. I think the scary color of my skin was really because of the bolus they used every time for the last minute or two of the radiation. As to my cough - as I also have GERD, and the type of cough seemed to be similar to the cough I get because of the acid reflux, decided to try omeprozole and now 5 days later there is quite an improvement. So for now I think it must have been GERD maybe triggered by radiation or my anxiety or maybe both.
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Thanks everyone for your replies.
Yesterday's treatment was okay, but I did get a stabbing pain by the second angle they set the machine to in the scar on the outside edge of my areola (they moved my nipple up over the lumpectomy, which was at twelve o'clock over the nipple area), and my nipple. Anyone else get pain *during* the radiation? Although I feel some new soreness, and a slight heaviness, that stabbling pain hasn't really come back.
I have to admit that the nausea came back and lasted all evening. DorothyB, I felt kind of car sick on the way home, but the car sick feeling lasted. It made eating dinner rough. I feel okay this morning. I think I'll have to bulk load food before treatment, just in case I can't after, as things progress. My breast was hotter and slightly pink, so I added the coloplast ointment the hospital gave me to my aloe gel routine, being sure to grease up before bed. Breast was fine, and I'm a side sleeper. I am going to keep your schedule DorothyB, especially slathering up before bed. Thank you mom2bunky for your suggestion on the calendula ointment, I ordered it yesterday and it should be here tomorrow. I also ordered some miaderm (thank you edj3, and others). I can't stand the smell of the ointment the hospital gave me, even though it seems to be working with no allergic reaction (other than stinging sinuses from the overpowering fragrance). I am looking forward to having other options. I also didn't realize how much I wouldn't like the slimy feeling of some of these ointments, especially if I have to wear a bra. Shluuuurp is what I am going to think every time I put on any gel or ointment. Thanks mom2bunky.
Avei, I am sorry to hear about your GERD. I bet it makes dealing with this a little harder. I am using invisaligns (decided to use this down time to accomplish something for me), and it might be causing issues because it really dries out my mouth the first few nights in a new tray. And thanks for your input about the boost treatments, I will have four of those at the end and I appreciate being prepared for the ouchies. It is a larger dose in a smaller area. I don't know what a bolus is, but I think you are incredibly brave to just shrug off the discoloration.
I do feel more tired. I feel as if I forgot to take my morning dose of thryroid medication, even though I know I did. It's not overwhelming though, I can get through it. I did a little better with my breathing yesterday during treatment. And my lungs only itch the slightest bit today.
This is day 5 for me though, 15 to go.
Thanks for all your replies and comments. It is so great to know I am not actually alone in this.
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For me, the fatigue is still present. The second week after rads ended was the most intense at this point, so as I've said before I'm really glad my RO told me it can last 4 to 6 months.
My skin still looks like a violently plucked chicken and my nipple is still peeling a little. And my vampire white skin is definitely tan from radiation. My derm will be shocked at my next post-melanoma check in August. I might see if he finds the micro-tattoos on his own!
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I did have early side effects from radiation. The first couple of days I had pinkness and swelling that went away over a few days. The sunburn started around week three. I had nausea and a scratchy throat most of the time (the moron nurse there kept telling me I had the flu--yeah, for 6 weeks with no fever or anything). The side effects would get better over the weekend and ramp back up on Monday a few hours after treatment. Fatigue also set in by Friday each week.
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edj3-- It is a little disheartening to hear you still have the fatigue weeks after treatment.
But it is good that it didn't catch your flat footed. My skin has that plucked chicken look too. I thought it was just me. I too am vampire white, a tan will be extremely noticeable. I am only on day 5, so we'll see if I tan. I got to see my whole area of radiation, and I am sincerely concerned about my lymph nodes. Have you had any issues with lymph nodes yet?gb2115-- It is good to hear that, although you too had swelling and pinkness, it went away and didn't feel burnt until week three. I mean, I don't want to burn, but hey, it's radiation right? I am concerned about the flu symptoms you mentioned, I'm sorry you felt that way. I am getting a kind of hangover feeling, complete with nausea, and a weird poisoned tiredness. I feel off, like the way I felt years ago when I was doused in pesticides by a careless termite treatment guy. I also had a cough and itchy lung, but that went away after the first week. I'm only a little phlegmy now and then. I keep getting hiccups, which I never get, every once in a while. That indicates that my esophagus is irritated, which is a worry. And, of course, when you mention it to the nurse, they poo-poo it, those symptoms don't happen when you're having your breast irradiated... Sigh. I felt so much better late Sunday last weekend than I did that Friday. This will be my first full week though. We will see what happens. I also have to ask- how are your lymph nodes? Did you have to have them irradiated too? Also, what kind of gel, ointment, cream did you use? What worked for you?
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Well I ran all the way through rads, three days a week for a total of 56 miles. So yes, I was fatigued but not tired if that makes sense. I didn't need sleep, I was more out of gas. And I felt that way whether I ran or not, and since I'm a runner I ran
I've heard from a coworker who had essentially the same treatment protocol I did that her breast remains tan two years later. So this may be a rest of my life kind of thing.
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edj3-- I understand what you're saying- that the fatigue is not a sleepy thing, it's a loss of energy thing. I used to have chronic fatigue due to some long undiagnosed immune system and endocrine problems. I remember how that felt and don't look forward to it. That said, I can only hope to handle it when it comes.
I was told that if you get a tan, it is so complete that it can last years and years. I dread that too, but at least the skin can recover up to that point. It will be weird, I am very, very pale, so I can relate.
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I did have my lymph nodes radiated....the ones near my collarbone too.
I used Miaderm at the advice of my RO, but ended up having a pretty yucky allergy to it. The last couple of weeks of radiation I just used plain lubriderm. I had to get a steroid shot from the derm for the miaderm allergy so a lot of the skin discomfort cleared up pretty quickly.
Hang in there...it becomes a fading memory I promise!!!
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My tan is also still there, nearly 9 months out. Fading but still solid. A Weird rhombus of sorts from my way behind my left ribs heading up into my armpit across to my clavical, then sharply angled between my cleavage and then a nice straight HWY 66 to my ribs again. One more unique thing for this fantastic Unicorn. LOL.
Also no need to shave my left armpit still. So hey, there's that.
I developed Breast Lymphedema from RADs. Wishing you the best and simplest of luck as you finish up the remaining treatments - hang in there and keep posting.
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My fatigue WAS a sleepy thing. If I had the luxury of a nap, it helped immensely. It's amazing how differently we all react. My tan is gone, but the darkness on the nipple and the scar will most definitely take longer to fade, I can tell already.
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Spoonie, would you share the symptoms of the breast lymphedema? I'm seeing the OT again today, last week she mentioned the swelling I have below my armpit, and around on the left side of my back. I'm beginning to wonder about that for myself.
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Edj3 -> Good luck today at your appt. For me, my symptoms of Breast LE were constant and increasing breast heaviness, redness, aching, a burning sensation, as well as skin pitting, swelling in and around surgical scar areas and also throughout the inner quadrant of my left breast.
"A Prospective Study of Breast lymphedema-Frequency, Symptoms, and Quality of Life"
Https://www.nlm.nih.gov/pmc/articles/PMC3924783/
"Frequency of breast lymphedemaAmong the 124 analysis-eligible participants, 38 (31%) developed breast lymphedema. Only two subjects qualified for breast lymphedema with moderate/severe signs at a single visit, while 36 had milder signs of breast lymphedema observed at more than one visit. All women who developed breast lymphedema underwent either a SLNB or ALND; conversely, breast lymphedema was not observed in any subjects who underwent breast surgery without an axillary procedure. Among the 78 patients who underwent SLNB or ALND, 38/78 (49%) developed breast lymphedema. The incidence of breast lymphedema was not associated with the extent of axillary surgery, since the frequency of breast lymphedema was similar among women who had WLE+ SLNB (33/67, 49%) compared to those with WLE+ALND (5/11, 45%), p = 0.82. "
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edj3 "I didn't need sleep, I was more out of gas."
That words it perfectly! I still get that, and I will be a year out next month (I also had chemo for a year, so there is that).
As far as the tan line, yup, still there. Damn box just above the swimsuit top. Uggg.
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Thanks gb2115. I was flat out told to my face that they would not be intentionally irradiating my lymph nodes, since they were all clear. But the area being irradiated is obviously the exact same area all other women getting their lymph nodes treated get. That's what pisses me off. The RO is lying to my face about it. If there is a good reason for it, tell me. But if there is no good reason, don't do it. I don't need the risk of damaging my lymphatic system if it doesn't need it. And my medical oncologist and surgeon say it doesn't need it.
Today a new techician did my treatment, and now I have a sunburn from the bottom of my chin, over my neck, and down my chest, which I've never had before. Now I am worried that they are hitting my thyroid and possibly damaging my esophagus. SMDH I would be more trusting if they would actually communicate with me. I tried to get a second opinion from a different RO today, but they told me that they aren't willing to do it because my RO is a colleague of their's (they're at a hospital an hour away, for goodness sakes. And I can't leave the system because no other hospital takes my insurance). I am going to have to be damaged first, then have to take legal action. It is infuriating.
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Oh my gosh Spoonie77, If I am understanding you, you're saying you had the feeling of damage to your skin and breast from the first treatment, that you were supposed to get (and got) radiation treatment to your axillary lymph nodes, and that it left you suffering from lymphedema. What you have been going through breaks my heart.
It is frustrating to me that I am placing my lymph nodes at risk by letting my body be irradiated according to someone else's preference, and that despite having perfectly clear lymph nodes and no tumor involvement, I am now going to risk lymphedema.
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Yes it truly does suck, Calli0p3. I've been through a lot but somehow I still keep trucking. One thing I can say is that yes, there is a risk of LE but Its low. I'm one of those people that gets all the weird things so I was not expecting to sail through RADs.
I'm not sure if you had lymph nodes removed during your surgeries, but I did have 3 taken out for biopsy. That also plays a factor.
Looking back, I think that proactive decisions & stretches I did during RADs helped limit the extent of my LE. Without my team sending me to Cancer Rehab for an assessment prior to RADs things could've been much worse.
If you are concerned, ask you team for an assessment & for things that you can do now to limit the damage, rather than them waiting till RADs is over.
Wishing you the best of luck. Keep speaking out for yourself and your concerns. This is your body and your journey.
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I asked for and got a pre-assessment from an LE certified occupational therapist before radiation started. She's working with me now b/c I've got some swelling and a lot of tightness and pain in my pec.
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Spoonie77, Thanks so much for your feedback. I appreciate your encouragement. It means a lot. It's hard to keep speaking up when the doctors and staff really just want you to be quiet. I hate being confrontational, but I don't feel that I am being heard. And when I am not heard, I tend to only get louder, but just doing that makes me stressed because I might be pissing people off.
edj3, that is a great suggestion. I am going to see if I can get a LE occupational therapist. Both so I can start as soon as I can, because it will help me feel less helpless, and maybe I can get someone who actually listens to what I am saying, and what I am asking.
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Hey Spoonie77, what proactive decisions and stretches did you do to lessen LEs? I also have been worried about whether I should or should not do cardio/arm movement exercises during radiation. Does it help by increasing blood circulation? Does it cause damage, do no good, during radiation? Should I wait until treatment is done? Are there recommended kinds of exercises to do? So confused. I am feeling tired and run down, but feel better standing up than sitting down (does that make sense?). But I am increasingly concerned about the damage to the vascular system in my breast, and, of course, my lymph nodes. Anything that can help, even a little, I am willing to do.
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