Winter RADS 2012 Club...Please come join the fun!
Comments
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Hi Kelly, radiation was something I never wanted in the first place. When I was first diagnosed with DCIS, I was given the choice of a mx or a lumpectomy, but due to the size of the area, it was thought the mastectomy would be the better choice, and I wanted to avoid rads. I was told the surgery would take care of the cancer once and for all. Well, guess doctors aren't always right, because my margins weren't clear. There was high grade DCIS in them, and since that was why I had the bmx in the first place, it seemed to me that it wouldn't make any sense to have my breasts cut off, and not get rid of the remaining DCIS. There was also found a couple areas of IDC within the DCIS, so I was glad I chose the mx over lumpectomy. I did not want to take any chances of a recurrance. So, onto radiation I went. I just do not want to hear those awful words, "You have cancer" again! I do recommend discussing your treatments with your RO, and find out the plusses and minusses of having radiation. Like me, I'm sure you feel there's no way you want that stuff hanging around inside your body any more!
My radiated TE seems to be holding up, but it's my skin and the flesh under it that is starting to feel like a bad sunburn. If you have a TE, yes, you will need more surgery to continue your reconstruction. Your PS will have to swap them out for either saline or silicone implants. I was going to have the silicone implants, but after reading about how radiation affects skin, I am going to get a second opinion about flap reconstruction instead.
Hope that helps, and if you have any other questions, please ask!
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Your answer is why I am struggling with my choice. The RO explained to me Friday that because I am younger than 50, had a large tumor- 8.4cm, I was automatically in the higher risk for reoccurance and was recommended for radiation. The tumor was large and they could only get a clear margin of .5mm around skin. He said the risk for reoccurance in my situation is 15-20%. Radiation would cut it in half.
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Kelmo- it sounds to me like you might benefit from a second opinion around your need for radiation.
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kelmo2013, I see. So there are some other factors in your case, like close margins. I do not know if age itself is reason for radiation. Yes, a second opinion sounds like it might help.
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Elimar- I did not have any microinvasion. DCIS was the only cancer found. I think most of the radiologist in my area are all on the same board and will probalby give me the same answer.
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Andrea623: Hang on. Almost there. This is what we were expecting. When do you see the doctor? Tomorrow? Can you use the Tazzy's soak for the pain? I think that the depression is really fatigue in disguise. Nap time my sister. Remember all of the sisters on the fall rads? Where are they? Feeling better and doing Christmas shopping, maybe baking cookies or playing with kids and grand kids. They got better and so will you...and I will too. This will pass. {{hugs}}
cowpower: c'mon...you paid that "friend" of yours to roll in my way so you could win the competition...watch out...paybacks...insert evil laughter......bwwwwaaaaaahahahaha...tomorrow is another day. >:-)
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Thanks loveofcritters. I think the fatigue doesn't help! Guess I was hoping to be lucky and get through this with nothing more than a little pinkness. Pretty soon it will be December 11, and I can ring that finish bell at the center! Then it's on to enjoying the holidays. How are you holding up?
I can't help but remark on your user name. Do you have a lot of pets? Mine are like my own children, but much more spoiled. -
Andrea623: I have 3 dogs! Pomeranians, and all registered Therapy Dogs. I love them very much. I am starting to burn now. I have 15 more treatments, so I am worried like you. I was fine on Friday then yesterday my underarm started to burn. I tried to air out as much as possible. It is just like the other girls said about it sinking in even after the treatments. I thought it would feel better being off for the weekend. Oh well. I see the doctor today and we will see what he says...if the stinker will stay in the room long enough for me to ask him. I am hoping that I can work while finishing these treatments, but I don't know. Just wearing a cami with shelf bra today.
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loveofcritters, I'm sorry to hear you're starting to burn too. Hopefully Tazzy's saline soaks will help! I haven't tried them yet but think I may this evening. Let me know what your RO says! I didn't even see mine last week!
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Hello ladies,
I'll be starting radiation at the end of jan. I just finished #4 of 6 rounds of TCH. I haven't been that active with the chemo, just walks. I am hoping to be able to get back into a workout schedule during radiation. Although I have gained some weight during chemo, I'm more concerned with getting some strength and energy back. Is this realistic during rads? Thanks for all the info on this board, definitely makes my next steps less intimidating. -
I start this Wednesday and am getting a little anxious. I am very fair and sunburn easily and am hoping that my skin can take 16 tx. I went to the pharmacy here in my small town and there sure wasn't much of a selection of lanolin-free moisturizers.
Though probably mentioned many times before, what are the 'better' moisturizers for fair skin?
Thanks for this and all the other great information here. Couldn't do it without you girls
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It's a common assumption, but fair skin does not have an increased liklihood to get the severe skin reaction (which affects about 1/3 of women regardless of skin shade.)
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Happy Birthday Heidismom and welcome Jennifer. That's great that you dodged the bullet on chemo!
Cowpower and loveofcritters you guys are hilarious! I can just imagine you both running through the parking lot clothes flying, sliding across hoods of cars, out of breath as you rush into the doctor's office ready to go boobs hanging out and people in the waiting room all looking aghast at you!
I just picked up my little bottle of tamoxifen, but haven't started taking it yet. It says that it causes muscle aches and I'm still having muscle aches from the taxotere so I'm not really excited to start taking it yet. I know I may not have that certain SE, but what if I do, I was really looking forward to getting rid of these muscle aches for a while. I'm suppose to start my tamo when I start rads, but....I DON'T WANT TO! Is it so wrong to want to feel good for just two weeks before I possibly feel bad again? It's just like starting chemo all over again I'm afraid of the unknown...of course I won't know until I start right? Might as well pull my big girl britches on and just take the stupid pill, but I feel like being a two year old instead.
Sorry to let out that can of worms about why we get cancer. I'm not angry about it really I just think about the what ifs sometimes. It is what it is and I know I have to deal with it so it's counterproductive to get angry about it, but I do wonder how to prevent it in the future so I think about it in those terms. I know the tamoxifen will play a part in preventing this from coming back also so I have to stop acting like a two year old. But I seriously do not want to go through any of this again. So going forward I may not can prevent this from happening again, but if I can prevent it in any way with diet and life style I want to know that I did all I could do. I want to know going forward that I did all I could to prevent a recurrence.
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Hi ladies,
I am scheduled to have my planning meeting for radiation tomorrow. I will probably start radiation next week. I had a BMX with TE on Sep 14. I just finished with the fills for the expanders and now it's on to radiation. I am soo afraid of the radiation!!! I just hope my skin and my TE hold up and I can make it through the 26 treatments without too much pain.
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Welcome kittykoma05: I hope that your treatments will go smoothly, too! Stay right here and post away. We will all help you to the best of our ability. I don't have TE's but several sisters do so you will get some good advice.
Outdamnedspot: (I just love that name!) It will be scary the first time and after that you will not be afraid. It is the constancy of it that wears you down. Be aware that the emotions really go amuk on the first day for some of us...I cried like a stinkin' baby.
Cocoabean: I definitely had more energy as the chemo worked its way out little by little. But now after 17 rad treatments my energy is low again. But there for a bit I was able to do a lot, and felt energetic. You will be pleasantly surprised what a break it is to have rads after chemo. You will have to let us know how you do as you go through your treatments.
Cowpower: Whats the matter? Couldn't get your clothes back on after I "accidentally" glued your locker shut?
Me wins, me wins!!!! -
Loveofcritters...I hear you...I am feeling emotional about starting rads. I'm thinking that a lot of my anxiety is that until now, nothing much has really happened. Well, it has but it's 3 months from diagnosis, two months from lumpectomy and I have been feeling great on Tamoxifen. Rads are making it feel 'real'.
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sonson, I started my tamoxifen. I definitely couldn't tell you if I'm having side effects from it or the chemo. I only gave myself one days between when the MO wrote the prescrip and when I started taking the tamo. I am hoping it keeps me in chemopause actually and I didn't want my body to start thinking I need to be menstruating again, so I jumped on it. I don't think the tamo's a guarantee that I won't get my period but I'm crossing my fingers.
outdamnedspot, I start on Wednesday too. I'm nervous too but I feel: what's a soul to do? I'll start it, get as far as I can through it. I will baby my boob as much as I can and that's about all I can control. Glad to hear tamoxifen's been alright for you. VERY glad to hear it. I hear plenty about bad side effects but not "it's been fine!"
Got my port out this noon and am just vegging, hoping my head and tumy fell better in a bit. The anaesthesia always takes a while for me to get over...
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Critters- Well thanks a bunch- Not only did I have to try and break for my car wearing that damn gown, but I got stuck in the giant revolving door to the hospital...Would you know any reason for a sudden power failure? Going now to make sure nothing shows up on YouTube.
Outdamnedspot, Cocoa, etc. I agree with Critters(do NOT tell her, please) The beginning is quite emotional, but you settle in quickly. In my case I think it was because I expected it to be "nothing" after chemo. Having the simulation made me realize that it wasn't nothing. Also, you are alone for the treatment time, and I found that hard at first. I had number 17 today and now I practically nap while lying there. Just hang in there, there is an end, I promise. Also, I am a bit toasted on the skin, but so far no fatigue, so it is possible to have minimal ses, knock wood. -
Sonson, dont worry about the worm can. This is where we can feel free to open the worm can, even Pandoras Box! A little self examination is good, even if it makes us want to dip our chocolate in red wine:)...
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I start the first of 35 Rad treatments on Friday. I started my Tamoxifen on 12/1/12. So far I have no SE. How long did it take anyone else to get SE? I am an Accountant and my companies year end is 12/30 just in time for it to be mid way through my treatments. The only benefit is that I have my appt at 5:45 every day and I will have to leave work at 5 pm. I won't be able to work OT which is expected for my job. Will be very interesting.
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Hi ladies,
Wanted to check in as a fall rads alum (yikes...not a college I ever wanted to graduate from). Sounds like you are all doing fine! Reminder to keep loobin the boob (and underboob) several times a day with the creams/aloe/radiagel etc..that your center says is fine. Loveofcritters ran the recipe a bit back for the most wonderful relief on a hot tender skin. The rads still cook for several days after the treatments end..so keep loobin and getting air (again to underboob too) as much as possible. Everyone is different with S/E. If you feel fatigue, get to bed earlier and nap as needed. Your body is working hard to kick cancer's a$$..so be gentle on yourselves. For those with more severe toasting going on...I was given Mepilex foam from my rads center...it's a foam like strip that can be cut and placed on underarm or underboob etc..to prevent any rubbing or friction and works great. I used it from about 4th week on till a week after treatment over and it was great!! I did peel after treatments were over on underarm and underboob but all is healed fine (last rad was 10/31) and even the tan is faded. Hang in there gang and while it is like groundhogs day....it does come to an end. Hope this helps! Happy to answer anything else I can...hugs to you all!
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Hi Loneskier - looks like I am week ahead of you. Just finished rad #6 of 35. So far - no side effects. My doctor said that exercise is really important (and he stressed - by exercise I don't just mean being busy - he meant working out and working up a sweat). He said studies show that women that work out experience less fatigue from the rads.
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I thought I posted here the other day but I don't see it so...
Today was my first day of 33 treatments and for the past few days, I've been just pissed off at the idea of having to go through more stuff. Just angry and angry and, oh, yeah, angry. Kept thinking, "I don't want to do this" and just cried on and off yesterday and today. But hoping that'll change as this becomes routine. The nurses at the Disney Cancer Center are great and my RO is very nice. This just somehow seems more daunting than chemo because of the sheer numbers. However, it did go very fast and starting tomorrow, the courtesy van will start picking me up and driving me home so I won't have to take the bus. And the treatment wasn't at all bad. I just don't want to do this anymore.
Hopefully tomorrow I'll be all sunshine and puppies. -
Lifeonitsside- i share your feeling of being" done with it already.." It sort of alternates with being glad I am still in active treatment because I think I will be more anxious when I am no longer doing something active against those bad littke sucker cells every day. Sometimes the head games are just as daunting as the treatment. Have a sun ray and a puppy on me today. Heck, toss in a bluebird or two!
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cowpower: well the power wouldn't have gone out if "someone" hadn't stretched the cord across the hall...just sayin' How did you like the video? You were cute with your frantic face pressed up against the glass...and me shaking my booty at you in a victory dance! hahaha
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Well, Critters, Let's just say you should open your rads locker very carefully today.. btw, happy more than half way "done." My phone wont stop ringing sinc the video went viral- TTFN
SONSON, I understand what you're saying about wanting to feel good for a couple weeks. It seems like every time we come back to normal a bit, the next thing, be it a surgery, another round of chemo, etc, gives us a smack. Pretty soon we can all build ourselves back for the long haul. Did you notice that Lovecritters was saying her skin was beginning to get red? She will feel much better later today- I pumped her locker full of aloe gel. She should get a nice cool and soothing wave when she opens it. I love to help when I can. -
Lifeonitsside-try to think of it this way...even if you only had four rounds of chemo that was twelve weeks worth of chemo and the rads is only half of that at six weeks. Don't think of it as thirty something think of it as weeks instead and maybe it won't seem like so many. Because it's really going to go by faster than the chemo did and I know the chemo wasn't every single day, but I do know that I dreaded every single chemo treatment and every single side effect. This won't be as bad...it may not be fun and sunshine, but it shouldn't be as bad. You got this. And damn you got Mickey to treat you! What could be better? Really? The Disney Cancer Center seems like an oxymoron.
And I don't want to burst any bubbles here, I'm just trying to keep it real...but the side effects of the tamoxifen may not creep up on you for maybe a month or so. Cowpower I see you started your tamo back in October...how are you doing so far on it?
Thanks, Aruba for checking in on us. We do need our sisters that have gone before us to help us out. And I so appreciate your willingness to help and answer questions. I'm so jealous of all of you that are getting to start before me, but at the same time I'm glad you guys are going before me and can give me tips. I only have a consult for tomorrow. I still don't know when I'll actually start the rads. Hopefully I will know tomorrow!
Sonya
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I've been on tamoxifen for over a year. For me, the side effects are not bothersome. I've been on Effexor for a few years, though. That could be why tamoxifen hasn't been a problem for me.
My family had the flu last week. What a PITA! I caught a cold and now it's starting to leave. I've been taking Mucinex to keep my lungs clear. I really don't want to start rads with junky lungs. Wed. is X-ray, Thurs is treatment #1.
I feel pissed off about rads, too. I was in the gray area after BMX last year and opted not to have rads, with my ROs blessing. But residual IDC was found so now I get the full treatment, including supraclavicular. I still have tightness from BMX and ALND so I do my PT stretches. I'm worried rads will make that worse and will be an even bigger reminder. But I'm trying to take it all in stride. I read and talk to people. I just started reading Anticancer and so far it feels inspiring. I'm trying to be good to myself.
I started pre-lubing my breast last week and I noticed how dry it is. The dryness hasn't dissipated yet. I hope this isn't a sign I will have rads trouble. I'm just surprised I didn't realize how dry my breast skin is! I'm not that used to moisturizing in general. I've got some good stuff to use, though. -
Sonson - The official name is the Roy and Patricia Disney Cancer Center. But my physical therapist is a total Disney princess - pretty, tall, long black hair, sweet face and voice. Every time I go for PT, I have to keep from laughing because she's such the Disney princess prototype. I keep waiting for costume characters to be strolling through the hallways. But the treatment is great and everyone is so lovely. I was worried about transferring my treatment from Cedars Sinai, where I had my surgery and chemo, but it's so far away for me to get to by bus. Disney Center is just as good, as one would expect. Thanks for the words of encouragement. Feeling a bit better about things today.
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Lifeonitsside, So jealous. I can imagine a Magic Kingdon Cancer Center in my mind, with Goofy hooking up my chemo.
cider8, Not sure what you mean by pre-lube, but there should be nothing on your skin before rads or it might worsen the skin reaction, but nothing wrong with taking your moisturizer to the treatment and putting it on immediately after.
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