February 2018 Starting RADIATION
Comments
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Just finished day 3, saw the RO (every Wednesday is "Doctors Day"). Of all my practitioners, he's the one I connect least with -- talks fast and is somewhat impersonal, rushed through the visit. I don't have a problem with him as a professional, but bedside manner somewhat lacking. (Is it a coincidence that he is the only male doc on my team??). The impersonality kind of describes the entire rads phase for me.
I reported that I'm not feeling fatigue, exactly, but a kind of strange "drugged" feeling, slight and not unmanageable. The nurse seemed surprised, like that's not typical. RO said you could feel like you have a cold or something. That's my main SE so far. Making some strong tea for that now.
Three down, 27 to go.
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Miranda~I think feeling "out of it" along with fatigue is all part of it. Kind of surprised your nurse was surprised! And, I would add to that: "foggy brain" as I sometimes can't grab the word I want out of my mind! ;-)
Blair-I am so sorry to hear that your back is still hurting! I remember you having that through chemo. I will pray that it eases up and you get real relief..soon!
Was told by the RTs today that the skin redness might appear after I finish radiation. She said it might feel like spending the day at the beach, taking a shower, ..and then WAH-LAH there is a sunburn! Was also told that the fatigue should wain about a month after finishing radiation. I sure hope so!
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I just had my dry run today and found out I start monday. I am also doing the "Canadian"method and will have 21 treatments instead of 31. I had the option for the 31 treatments but I told my dr I just want to be done. Overall the amount of radiation will be the same. I am a little nervous to start though.
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Well, I am finally all set for my Rads to being on the 26th with 5.5 - 6 weeks worth which comes to 25-30 sessions with no boost they said. They are treating the entire right breast. They gave me the option of the tattoos or sticky's with a black "x" on them. They advised me many women don't want the tattoos and opt for the sticky's. We're starting with sticky's but if my skin begins to have issues with peeling or the sticky's show irritation (I can't do band-aids or any adhesive tapes on skin without irritation) they'll end up doing the eight tattoos. I advised them I just want to make sure they are accurately lined up...LOL.
That first mapping, as I mentioned in an earlier post, I was scared to death. I guess it hit me then that "This is real". I came home and cried for a good hour. Seems my hormones / emotions / anxiety just all set in.
It took a long time to get me marked up, aligned with the machine and two CT's done. About an hour. I'm hoping laying there once the actual treatment begins won't be very long. I think my anxiety will go through the roof. Normally, I would be fine. Since all this, my anxiety has been at an unusual high. The room I was in for mapping is not the room for the Rads. I have not seen that room yet.
They want my appointment times kept the same time every day. A bit difficult with other dr. appts. kids appts. and I home school my daughter right now. I'm thinking rather than noon appts. they may be best later in the afternoon. But we'll wait and see.
I hope everyone is doing well with all their treatments.
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Dectormember- we will be starting on the same day! We got this! I hear you on the emotions, it didn't really kick in for me to yesterday too. And FYI, if you have to get the tattoos, they don't hurt. I wasn't given a choice, they gave me three and they just use a little needle. No tatoo gun. I was afraid that they would hurt, but it wasn't bad. My neupogen and zoladex shots are worse than that.
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Hi little lori. I'm also getting hypofractionated radiation. I've completed 8/21. Last week after my 3 rd treatment my left breast was reddened. MD and techs said it was too soon also for it to be related to radiation. I was reacting to aloe vera. I was told to switch to coconut oil. Reddness cleared up after a day and now so far so good. My nipples are sensitive but have been since surgery on 12/20/17. Left partial mastectomy with oncoplastic bilateral breast reduction at the same time. never lost sensation but both breasts are hypersensitive. Good Luck. At this point the left nipple feels like the right. What does your MD think is causing your inflammation?
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I finished rads today. I laughed and cried through the last zap. So gateful for technicians who have a sense of humor and have a feel for how we patients are handling the stress of rads.
Good luck ladies, hope your rads go well and we can stay cancer-free for a long, long time!
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Hi Girls,
Posting from Oz, originally from Scotland! I too am up for radiotherapy starting mid March (I think!) had MRI today, pet scan next (right chest wall, axilla and supraclavicular) I had radiotherapy in 2002, had virtually zero side effects, a little tired in the afternoons (and some scar tissue on lung) and would eat an ice cream most days after school pick up for the sugar hit! Not sure how I will go this time, now 54, planning on working through r/therapy (in Nursing) so hope all goes well!
Solo pleased to have found this Site, very reassuring and inforrmative!
Good luck Girls, will check in again soon!
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Hi everyone,
I have a question if anyone could confirm. My hubby asked me last night why am I getting rads every day for 5-6 weeks. He "heard" from someone that they only had it once a week for 5 weeks. I explained to him she must have been getting higher doses if just once a week. He's now questioning If I had DCIS which invaded by only 1mm (per the dr. I'm as close to a stage 0 as you can get) making me a stage IA. Then why so long a treatment of rads? I also have a family history of BC.
Anyone here only have rads once a week?
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Miranda - Yesterday was #3 for me too and said the same thing to my nurse & doc, and got the exact same response! Although I admitted that I think mine is more anxiety than anything else. Felt better after yesterday's treatment and more like myself today too. I go at 3:15 daily, so eat a bigger breakfast and very, very light lunch.... as recommended from friends who've done rads. Try to remember you're on a countdown now!
Good luck & many blessings to all!
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NanPir, that's funny. They must all read the same book, no side effects until later in your treatment cycle. Some strong caffeinated tea after treatment is helping.
Yay, countdown! I'm going to be getting pretty tired of going down into the "dungeon," but all in all, it could be so much worse.
Best to all.
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Hello all,
I went for my dry run yesterday and they said if every thing lined up correctly they could do my first treatment after the dry run! Well that freaked me out and we decided to wait until today for my first treatment. It went well but I am a little concerned with the amount of chest wall that is in the treatment area. I will talk to the doctor about it when I have my weekly chat. I am scheduled for 15 treatments/ no boosts on my left breast.
No irritation or fatigue so far.
Do any of you have diagrams showing the typical area "zapped" for whole breast treatment. I think some of the techs already think I am a pain in the butt because I am always asking questions. I'm still pissed off I was turned down for a prone position without even getting to try the prone table to see if I could "fit" for that position.
Dectoremember, I've never heard of a once a week treatment. There are twice a day accelerated treatments (partial breast) that are only given for a week. These were not available at my treatment center.
My RO told me not to put anything on my breast unless I am having problems. Not sure I am convinced about that piece of advice. I like to be proactive.
Hope everyone has a great weekend!!
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Hi Ladies - I just finished #11 today with 5 more to go !! I have very fair skin and just started getting pink, they were not concerned, just told me to continue using my glaxal base cream. They also said no lotions with oils, use dove soap for sensitive skin for showers and to be careful with Aloe as some women have said it has a stinging sensation.
So far it’s been okay, can’t wait until it’s over.
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Does anyone else who is getting rads have an implant? I am extremely worried about capsular contracture, which may already be starting to happen.
I love my PS and my OS, but I don't know why they advised a direct implant when it was known there was a strong chance I would need rads.
I notice the implant hardening and looking somewhat misshapen, and I'm only 5 days in of 30. I could be imagining it, because the implant is still settling.
I will see the PS next week
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What - no aloe lotion? I thought that would be good on irritated skin. I got a whole bottle of it and greasy Aquaphor. I don’t think my cancer center will give me any thing to try. I too want to start using something on my skin prior to irritation.
Doofuscat - are there such diagrams that show the beams? I think we should know how they are going to zap us.
I feel like the only one getting burned with 35 treatments! I wonder why so many? I only had one tumor.
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I finished my 3rd treatment today. I have been exhausted but most likely due to the 100 mile round trip everyday. The first 2 days I was pretty anxious and had a hard time with the breath hold, but today I did fine. My left breast was red to start with they have been watching it thinking it might just be from having surgery twice or it was an infection brewing. Today they decided to put me on an abx. 30 more to go
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I had my 3rd of 33 treatments today; only about 5 minutes. They did say that it would be quick, but what they didn't say is that the start time isn't set like it should be. 1st session, 6 minute wait, 2nd, 12 minute wait, 3rd, 19 minute wait. I'm not a person to wait They have to be fully ready before they want me to change into one of their not so pristine 3 hole hospital top gowns. Should I mention that they need a new laundry service? Still someone else's hairs on them. GROSS! Maybe I should get one of my own.
The gal is pink on the lower half and there's a pink, someone itchy spot near the middle of my breastbone. They gave me some RadiaPlex Gel to apply 3 times a day. Not sure how it's best to clean the area before applying while at work. Currently using disposable gentle wipes. In addition, when I use my left arm a certain way, I get a very painful twinge in my shoulder that may last a few seconds or longer. Counting the days.
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Sweetpea - you beat me by one extra treatment. Are you by chance having two weeks of Accuboost radiation after external? I hope the irritation doesn’t get worse. It would be a pain to have to apply gel to yourself 3 times a day at work! I’m realizing there’s an advantage to being retired!
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Hey - anyone else getting really bad dry eyes? I have completed 14 out of 16 treatments:-) ! But have started to notice my eyes are so irritated. I had laser eye surgery about 10 years ago and dry eyes are part of SE but now it is realky flaring up.
Found this link on our site: Dry eyes - radiation scatter . Just wondered if anyone else has been experiencing this?
My skin is holding up better than I thought but I use homeopathic calendula cream 4x a day. I also am taking bromelain too which helps inflammation, burns etc.
Miranda2060 NanPir lol I think your right about RO reading the same text book!
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eight out of, I see there are several of us who are going through this at Fox Chase. Are they not the most amazing doctors on earth??? I've done everything there except the radiation, only because I'm too far away to do it daily. I cannot praise these people enough...we still wonder what happy pills they all take. From the very first visit, through all the tests, the surgeries, reconstructions, good news and bad...even the therapy dogs, it's been the most comfortable and comforting place to make this journey.
Good luck with your radiation there
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Therapy dogs!!?!! I wish my hospital had those!!!!
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Blair2: it's quite doubtful that I would get accuboost. They have me doing DIBH ( deep inhalation breath hold technique). The RO said that if anyone told me that there was no chance of any heart damage, they were lying. Heart disease runs in the family so I insisted on getting tested before my chemo began. My MO didn't fight me on it so I ended up with a good cardiologist who also had BC and she set me up for periodic echo stress tests. I've had 2 so far and the next one will be after the rads.
As for the Gel that I have to apply while at work, luckily it will only be once; the other two while I'm at home. The techs always say that I am doing really well; wish I could see what they are seeing.
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Sweetpea - I saw your breathing technique on YouTube when I myself was concerned of my heart condition months ago. I had a bypass 3 years ago and was very nervous about radiation as well as chemo. I’m having the face down method - which I barely qualified for. (Size wise). The Accuboost is sort of a mammogram table method - not sure about that on safety, but I believe it’s a more direct smaller beam method. They claim they will not come close to my heart or lungs, but I don’t trust the medical society 100%. I did have a talk with my cardiologist about it, and he said there’s a small risk. Well, small or big - a risk is a risk - ug! In my case - it’s a choice of dying from heart or cancer disease. I never dreamed 5 years ago that I would have all of this happen to me. Heart disease was something that I thought I’d have in my 70s (does run in family), and no one ever had BC in my family. I broke family record of being the youngest female to have had a mild heart attack, and now BC record. I’m the most physically active of everyone too - makes no sense to me at all. Bad genes I guess.
I want therapy dogs too! How neat.
Tomorrow is my day one with rads
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Hi Blair2 - glad your are advocating for yourself and your health with the risk factors that you have. My Naturopathic Oncologist said that yes they are prolonging women's lives with breast cancer, but in the mean time they are dying of heart disease. I too am taking precautions as I have genes that also contribute to heart problems. I am 47 now and know that if I don't pay attention to my risk factors and do all that I can (diet, exercise, lifestyle, & suppliments) and depend on the medical community for all my healing I wont live to see 67.
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Blair2,
What criteria is there for face down radiation? You said you barely qualified. Just wondering
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Veeder - The breasts have to be large enough to dangle down. During my simulation, I thought I was going to be too short by the way the tech was acting, but I was ok.
Roaming - yes, I was quite scared from the get go about my heart. I had worked so hard to better myself after the shock of going through a bypass, and I think I actually made my breast surgeon mad, because I was more worried about my heart than I was saving my breasts. She made me upset by her aloofness to my heart concerns and that's one doctor I would never recommend to anyone just for having that attitude. Then I found out I had to go through chemo. It brought more stress to me. I made an extra appointment with the radiation oncologist about my concerns, and she fully understood. I did some research and learned that there was a face down method as well as the breathing kind that Sweetpea is having done to avoid the beams to the heart and lung areas. I was glad at least they had these methods offered at my cancer center.
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It really takes commitment Blair2 to make lifestyle and diet changes. It is unfortunate that your BS didn't recognize your effort and what I call brave acts of self love to take care of yourself. Seems like the BS never had to face those decisions.
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Found a lump in my right breast yesterday:^( I have been having pain in my breast off/on since last month but found no lump last month. Going to GP today. It's shitty cause i only got today and tomorrow for rads. I was so looking forward to building a new normal life. I had been applying for work. Now I guess I'll have to put this all on hold again:^(
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Oh Roaming Star - so sorry to hear this. Let’s hope it is benign and you can move forward. You are in my thoughts.
Hugs
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Roaming - That is a scare to discover a new lump so soon. I thought maybe it was a healing type hardness that some people get, but I see it’s on your right side. Keep us informed! Hoping for good news.
No radiation today. Friday night I discovered a suture that was buried deep down in my nipple since October. Had to go back to my plastic surgeon and have him remove it this morning. It's out.
So tomorrow I start the third phase of this mess with rads.
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