Winter 2015-16 RADS
Comments
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Tomorrow is the last day of whole-breast treatments! Then onto 5 boosts.
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I haven't had side effects from radiation yet (22 treatments so far), other than a slight pink/darkening of the skin, but I don't feel any discomfort or itching or anything. Will the boosts likely have any side effects because they are more focused? Are they aimed differently?
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Mairew, good for finishing WBR tomorrow!
I had my first boost today. It is electron beam rather than photon beam. They told me the electron beam does not penetrate as far, so no need to hold my breath for these. It is aimed completely differently, and only has one position instead of the two for my WBR. It will vary for each person depending on where your tumor was. They took off all my stickers and drew an area on my breast which represents the boost field. It is roughly an oblong around the site of the tumor. Then they made a template so if the marker fades too much they can easily re-draw it. The whole procedure did not take any longer than a WBR treatment, and they say it will be quicker tomorrow. They said the skin can have a reaction similar to the photon radiation, but since it's only 5 days, I should not notice much.
Katja, I did not have any bad reaction to my 30 WBR trreatments, just a little darkening with some pink under the arm and under the breast the last couple of days. But no itching or burning. This is only a guess, but could having chemo prior to rads make some women have a worse reaction?
Is there a special way to do a breast self-exam after you have had radiation? I am changing the way I do mine, because my ob-gyn never detected my lump when she did a traditional breast exam, and it was there for at least 2 years! I am using the "grab and squeeze" method (my own name) where I grab one breast at a time and squeeze it around like putty. I think I'll definitely have a better chance to feel any lumps or thick areas this way, whereas the way I was taught - lie down and rub in small circles on the skin - did not work for my dense and fairly large breasts.
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Welcome Welcome Lou53 - so sorry you are here but so glad you found this awesome group! My advice is to read thru the pages of posts here - lots of great tips and some are listed at the top. Let us know once you get the details on your treatment!
WooHoo mairew - good luck with the Boosts - the end is in sight!
Moondust - I hope your shoulder gets better and good luck with getting your chemo plan - you will do fine!! And not sure on the Self Exam's - I am with KateB - had a mastectomy and just feel all around - good question - never thought to ask..
Findaway - UGH for you on your back spasms -hope they get better!
VickiRides - Wow Wow on your dream - not sure how to analyze other than to say Rads just stink LOL. Hope your sore areas heal up quick! Hugs for you!
DurhamGirl - great question - for me I was waiting until I had my first MO follow-up post chemo and that was Monday! She reviewed my overall follow-up plan and my status is and this was given to me in writing "No Evidence of Disease" so I will now say "I had Cancer" ... I do struggle with that as I still have so many side effects and feel like cancer has changed my life permanently but I will not let it rule my life .. I am a Cancer Survivor, Cancer-Free and I had cancer
Musosgirl & Edwsmom - I just started Effexor about a week ago in the hopes of curbing my horrible Hot Flashes and on Monday my MO gave me script to start Tamoxifen and specifically said that Effexor was one of the anti-depressants you can take with Tamoxifen.
barbe1958 - Yes post-menopause I agree can take or switch to Arimidex .. I actually thought that is what my MO was going to give me on Monday since I have not gotten my period since September - she said I would not be considered post menopausal due to age (46) and only been 6 months so she put me on tamoxifen for 2-3 years and then switch to Arimidex - at least that is the plan for me for now! Got my scrip today and have not taken it yet .. UGH
7 of9 - hope your skin heals and good luck with chemo - Yeah its your last step!!
Brimton - looks great - glad all healing well - my collarbone open area closed as well ..
Have a great trip justmaximom - great for you on making small changes - doing the same myself hoping to lose 30 lbs ..
WooHoo Peabrain - love your pic and your hair - cancer-free girl!! Glad all healed well and I have all the same complaints LOL
brithael and KarenR - I had the same red bumps and my RO ordered prescription steroid cream that worked great and took the itch out
Katja - that is awesome your skin is doing so well and I had 6 boosts - the skin just got pretty red - did not bother me at all - good luck!
Hugs to all dealing with not so fun se's either physical or emotional!
Mary
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Just a note about self-exams!! Make sure you hold your arm above your head to get muscles out of the way! My recent lump couldn't be felt with my arm down as it was growing up between ribs on my flat chest and yet, with my arm over my head you could SEE it!!!
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Great Tip barbe1958 - thanks!
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My machine was down again today. I am not complaining! I needed the break. But mentally I am feeling better so I am ready to wrap this up. 11 more. Still. But that is 2/3 done. Maybe with this 4 day break she won't do the week off between rads and boosts...
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Hello all -
As promised, I counted up replies to my VERY informal questionnaire about rads SE's. I got 13 responses to various questions. Here's my summary:
1. How many treatments before you started to see burn on your skin?
This varied from day 1 (pink) to day 21 (burn) but on average, the replies said that most reported skin burn by days 11-14.2. How common are open sores? Did you get them?
Interestingly, exactly half of those who answered this question reported open sores and half said no. Granted, most were still undergoing treatments when they answered these questions. Sores were typically reported from day 15 thru 26.3. After how many treatments did you start feeling tired?
Nearly everyone experienced fatigue - only 3 did not. Fatigue started for some on day one (three reported this and two had just finished chemo). For the rest, fatigue was reported on or soon after day 5.4. Are those final 'boost' treatments higher dose than your normal rads?
I should have worded this question better but still, I learned from your responses that boosts, whether during or after surgery are ELECTRONS and are targeted on the area where the tumor WAS. The whole breast rads that we get are PHOTONS and are spread out daily for weeks (as we are all well aware!).Only two of us didn't or won't have boosts after whole breast rads are finished.(In my case, I received my boost dose during surgery, directly to the tumor bed - called IOERT - Intraoperative Electron Radiation Therapy)
This totally UNSCIENTIFIC survey was brought to you by Sunnyone22 who, when I first asked the questions had no fatigue or 'pinkness'. Today, after day 11, I have both. Mild though and I'm fine with afternoon naps. (I might have to continue these little catnaps even long after my treatments are over. I LIKE 'em!!)
Thanks to everyone
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So I finished day 7 of rads today. So far no very noticeable SEs other than my boob is a bit swollen...but it was like that after my surgery. My RO said I would probably start seeing some skin SEs at the end of this week. I am so excited....not. I am feeling tired but not really too much more than usual. I have always been a napper. I had a wonderful reflexology session today after treatment. It is a complimentary service the hospital offers while having radiation or chemo. I scheduled another session next week! I am 1/3 of the way done....yahoooooooo.
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Hi, I have never posted to this thread, but wanted to chime in on boosts. I have my last WBR tomorrow and then will have 7 boosts. Not everyone has the Electron beam for their boosts. One of my waiting room buddies, who is 1 day ahead of me, told me she was having electron beam and that it didn't penetrate as deep as the photon one. I asked about it I saw RO on Monday. Turns out my boosts will still be the photon beam. I think it depends on where your tumor was. Mine unfortunately was very close to my chest wall so I don't get to have the electron beam. I'm hoping the boost period goes as well as the rest of the treatment has. I've had minimal skin side effects and no fatigue to speak of, although I do nap every day!
I'm very much looking forward to 4/8, my last day of rads!!
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interesting...I don't know what kind of boosts I had, but they were way easier than the wbr.
I hear you, @justmaximom, on the weight thing. I don't need the tough love because I give it to myself every day. I gained so much when I was sick, but it couldn't be helped.
Three weeks out, and my energy continues to improve. Today I rode my bike for 20 minutes, went to tap class, then to the food trucks down the street for dinner and still felt great! My skin is still pink but feels fine. I do seem to have trouble with my shoulders now, though. Feels like tendinitis. Sigh.
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Getting slammed by this bladder infection (Arimidex?) and on second round of antibiotics. Have to get a renal ultrasound on Monday to make sure my kidneys aren't in trouble.
Was funny today as I lay down I started to call off the coordinates.... 17-7, 21-1, 2.5 cm post...... hehehehehee
I'm not told to breathe any differently, that concerns me a bit as they told me they are hitting a bit of my lung in the process (can't avoid it as I'm very deep chest wall recurrence). I was told to breathe normally....
Still concerned about getting a total of 9,500 gy's......
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So I am almost 2 weeks from rads and the areas that peeled are getting new skin and starting to heal.
My energy is getting better but I still have one area that is real itchy and nothing seems to help. I was wondering if others experienced this and how long it took
As for the boosts I had 5 and they were targeting my scar as I had a mastectomy and they used the bolus each time. It focused on the skin and a good portion of my scar peeled
Glad to see more people are getting close to the end and hopefully with minimal SE
Good luck to those just starting. Happy Hump Da
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Duzy, does Benadryl help?
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I missed taking your survey, Sunnyone22
3. After how many treatments did you start feeling tired?
Nearly everyone experienced fatigue. Only 3 did not.Well, make that 4. After 23 treatments, still no fatigue at all. So, I'm beginning to think I may never get fatigue from this. I also don't have nor expect to get open sores. Only a little color.
I think those of us who experience no side-effects are not on this forum so often, so missed taking the survey.
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Hi All,
Yesterday was 16 out of 28 . Today, noticed some really dark moles ( different in color from the dark brown keratosis that are all over my chest and abdomen. These are black. Also some skin tags have appeared on my breast . Maybe they are just going to be part of the skin peeling? Anyone know anything about these , are they side effects?
Glad to report am not having any real fatigue, but of course I am in bed and reading by 9:30 any night I do not have a meeting, or workshop, so that probably helps.
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Kkubsky - Glad you're noticeably SE free for now - hopefully any you get will be mild. My RO said the treated boob usually swells a bit and then actually shrinks once treatment ends. Being a napper, you might be taking care of your fatigue issues. I was never a napper but I am now. Just catnaps but they really help. The fatigue doesn't seem to be day-long for me, just need that nap late afternoon (my treatments are just before noon each day).
Gemma12 - Thanks for extra 'boost' info. Makes sense that each of our rads experiences are a bit different, base on histological type, size, location, etc. of removed tumors. Congrats on minimal SE's!!!
Twnkltoz - Glad to hear your energy is improving. Being in the middle of treatments, I'm encouraged when I hear 'normal' will return after these treatments are finished. Hope your shoulder pain subsides soon.
barbe1958 - So sorry to hear of your continued issues. Bladder infections are so uncomfortable. Please let us know what you learn from your renal US. I smiled when I read that you called off your rad coordinates. I can do that too because they call them off every day! Kind of like pilots calling out pre-flight checklists. Like you, I was told not to breathe any differently. I asked my RO about that and she said the initial measurements they took included the range of normal breathing and she encouraged me not to hold my breath. Can they make an adjustment for you to better avoid the lung tissue or is it unavoidable? As for your total gy's - I wonder if it's more than some of us are getting because yours includes lymph nodes and chest wall whereas some are only whole breast w/o lymph nodes, etc. What did your RO say about total gy's? I'd be interested in hearing.
Duzy - So glad you're healing so well. Gives me (us) something to look forward to!
Katja23 - Lucky you! Glad to hear you have no SE's. You don't really even need naps? Good point that there are probably many SE-free ladies out there who are not on the thread.
Windward - about your moles......I had one pop up on my breast around day 7 and I asked RO about it. She said it was probably a flesh colored mole that was already there but just darkened as a result of the rads. I'll be interested to hear what your RO says about your new spots and skin tags. Please let us know.
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Thanks Mary, I see the RO on Friday so I will ask about something for these bump. They are itching pretty bad.
Machines are still down. No treatment all week so far. I was able to see my MO today. Everyone is with Medstar and they are still having issues with the computer system since the hack. MO had to write down everything.
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barbe1958 I have tried Benadryl, hydrocortisone cream and the Silvadeen cream they gave me And so far no relief
Windward I had a few mole do the same thing. My RO said pretty normal but always a good idea to see a dermatologist once treatment is don
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Hi KarenR,
My radiation tech called me last night to tell me that they are probably going to be down all this week. They hope to be back up by the weekend. If they are, they are going to schedule everyone to come in for treatment over the weekend.
We have some plans this weekend so I'll have to figure out how to get over there for my zaps around our schedule.
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Thanks edwsmom I'll call later today to see if I can get an update. This is crazy.
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Sunnyone22, Nope, I feel no need for naps. What I have changed is not staying up so late, which was too late. I used to go to be around 11pm, and wake up 5:30 - 6:00 am, but now I go to bed around 10pm, So, instead of sleeping only 6 - 6 1/2 hours per night, I am sleeping 7 - 7 1/2 hours per night, which is a better thing to do in general. I wonder if living on too little sleep for years contributed to the cancer. (My husband still sleeps more than I and takes naps.)
Following the advice of this group, I am consuming more protein. And I have been exercising more, even before the radiation started, such as walking 1.8 miles each way to and from the office, and then maybe going on 3 mile walks on the days I don't go in to the office to work. -
Duzy, for itching, I think it was said earlier that calamine lotion helps a lot. I see that Amazon has something called caladryl lotion. Must be a combo of calamine and benadryl.
Windward, I have numerous skin spots spots under my breast that got a lot darker, and one new mole on my side. My RO said I should have a yearly head-to-toe check by a dermatologist, not because of rads, but just because.
Barbe, sorry about the bladder infection! It may be that they can't miss your lung totally no matter what, but they are probably just hitting a very small area of it. Chances are you will have no side effects from it. My RO did the gated breathing for me because I told him I backpack at high altitude and climb mountains, so I need every bit of lung capacity I have.
The marker they used is once again coming off on my bra. Good thing I have several old bras I can wear this week.
My shoulder is still achy and painful if I'm not careful, but only three more treatments left!
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My shoulder is starting to ache #7 out of 25 today. They do shoot up through my back into lymph nodes so that is probably what's causing the muscle ache. Doesn't anyone else get zapped from the back? I get it twice - once for my chest wall and once for the lymph system in my axilla. The the front. I don't find the raised arm too uncomfortable but it's awkward.
Moondust, I get the marker transferring onto my camis so I've just started to wear "wife beater" men's undershirts so I don't ruin my camis with lotion and markers!
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Windward, YES! I have new black spots and skin tags. I asked my RO about one skin tag last week and she didn't seem concerned, but I will be asking again since these black spots have shown up.
Karen and edwsmom, my machine is still down as well. The longer this goes on the more I think 'eh, 22 is good enough. Why start back up?'. But I have Herceptin tomorrow so I have to go in regardless--I'll try to find out what is up at my center (since I am way out here in the heartland).
For those of you having shoulder issues, my lymphdema PT said that is really common after rads and many women come in 2 years after the fact needing help. She said starting exercises mid-way or just after rads will ward off major problems. If you have a PT you might check-in and see if they have exercises that will help. -
Musosgirl I have only had 13 of 21.
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Musogirl, thanks for mentioning shoulder exercises. I am fortunate that I have a retired PT I can consult with. He gave exercises to do, and they seem to be helping a bit. When I'm done with rads I'm sure the exercises will help even more. My PT said the rads arm position is impinging my anterior deltoid and may also be causing the bursa to flare. I am doing gentle bent-over pendulum swings with that arm, holding a 5 pound weight. He said that motion will open up the joint and relieve the pinching.
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@peabrain, I had to have both hands over my head for treatment, and both shoulders are affected.
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Musogirl, was reassuring to hear that my strange skin eruptions are not unique. Since there is probably noting to be done about them, I will stop fretting. It is only vanity. Luckily, I am old, so been there , done that already.
Am very relieved to hear others comlain about the agonies of lying in the arm stirrups on,,what I call " the rack". I thought I was being cranky. No matter how hard the very nice staff tries to make me comfortable, arms and hands on both sides are numb soon after I am still. Wish I had made a bigger fuss about having more pads or cushions till I was "comfortable" that very first time when they were setting up the co-ordinates that I would be stuck with for 5 + weeks. Now I always have to get into that position. Sort of like I wish I had paid more attention to the way I signed my name, when I was just starting out in life. I didn't realize the scribble I carelessly used would be the one I would be stuck with!
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