Fall 2012 Rads girls......come on in!

Funny to start reading on a new thread but seeing lots of old "friends"! I am still waiting for pathology but as usual, am jumping ahead. I can't imagine not having radiation since I had a lumpectomy so I figure I will be in the Fall Rads for sure. Aruba, I was interested in what you said about the Canadian trial and even though you are not in the short arm, it should be interesting for everyone in the future. I had to wait several weeks for my surgery and did a lot of reading. Dr. Susan Love writes a fair bit about the newer partial breast radiation. I have a friend in the US who had one of the 3 types so only 5 treatment in a week but hers was caught early on a mammogram. I asked a friend who is a head oncologist in a Nova Scotia hospital about it since it is only in clinical studies in Vancouver and a trial on Vancouver Island. He said I was not a good candidate because I have IDC and also DCIS so that was that but I hope for those in the future that is becomes an option.

I still have steri strips on so I guess I need to wait awhile for the cream but will be doing it for sure! Can't wait to get those pathology reports!

Marian 

Does anyone have any experience with RADX OTC Skin Therapy--it has 2% Lidocaine for pain and there is a RADX moisturizer.  It's at this website:

http://www.lotstolivefor.com/category/radiationburns

Cottontail--I just peeled my last strip off yesterday.  The surgeon said whenever they start to peel to take them off.  I tested the corners a few times in the past but they were still stuck on.  Yesterday in the shower I noticed that it was easily coming off.

To those who have already started RADS, what was the simulation like..go on Wednesday for that.

Cottontail, if they have been on two weeks or longer just take them off.



The simulation, they scan you and mark where the laser crosses n your chest. Then on the second one the double check everything and at my center they give tattoos. The third one they just double checked everything. They drew all over my chest in sharpie on the second two simulations. They also make a mold for you to lie in on the first simulation so that they get you into the same position each time. You have to lie there with your chest bared but who hasn't gotten used to that by now. They give me a warm blanky to cover up the rest of me though.

I took the strips off two of the incisions this evening. The port removal incision looks great, it already has that faded pink scar tissue look to most of it. The lx incision isn't quite as nice, the incision line is red and is a bit wide at one small spot. Overall it looks good, though. I started loosening the corners of the strip in my axilla, but am not as comfortable pulling that one off yet. I'll work on it gently in the shower in the next few days.



Anyway, now the strips are off my breast I can start moisturizing it. I already put moisturizer of one sort or another on my hands, feet, and forearms most nights, so it should be easy to just do my breasts at the same time. (Usually I use First Aid Beauty Ultra Repair Cream, but when I'm feeling fancy I'll use a Lush massage bar.)

Good luck christina, I dreaded rads too but it is good just to get it done.  The thought of what it is doing to me is rather unpleasant but we are all doing this to kill cancer.  So die cancer die.  

Glad the incisions dont look too bad cottontail and marian, heal fast! 

SherBear1280, wow that's really horrible experience.  Thanks for letting us know.  I might be a little more resistent to try lidocaine or at least try it on a small spot first if it is offered.  Best wishes for healing fast.  Hope to hear more since you have more experience.

SherBear......I did 30 rads last year the first time I was diagnosed and will do #9/25 today for my second dx. Last time I too got a terrible burn, my breast turned almost purple, the skin was peeling and was open and seeping. Despite the techs concerns, the RO insisted on "forging ahead"....finally, I refused to continue. He told me to take a week off. I stayed off work and spent with week at home with my breast hoisted up and a fan blowing on it (the open area was underneath the breast, in the fold), a comical sight indeed. I also used the Domeboro soaks. It healed up quickly and I finished the next 7 treatments without any problem.  I have a very physical job and think that when I was sweating it would irritate the radiated area.  I have a new RO this time and he said it may happen again. I am olive-skinned and tan very easily so everyone was surprised that I had this reaction. I agreed to have radiation again despite the setback last time knowing it was a very important part of my treatment plan to help kick this BC in the butt!  Good luck.......I hope you heal quickly!

Hi ladies!  I hope that everyone is doing well!  Thanks to those that have started - sharing your initial "findings" and all - it really helps.

I went for my first appt yesterday; apparently on the first day (this is all post-simulation from last week) they just do x-rays to make sure that everything lines up exactly as it should and that they are not zapping anything they shouldn't be, then today they actually radiate the noob.

Even though they told me that it was just x-rays yesterday, and even though I feel like I have a very positive attitude about this all, I still had a tear well up on that table for just a second or two.  It was just a totally visceral reaction that I didn't expect; I think it's like you said Tinaj - maybe it was a reality check again, yes, I do have cancer, and how did I get here? 

Or maybe it's this - I walk in the center and everyone else is like above 60 or 70, and here I am at 41.  People look at me with this sad sorry look on their face, and they speak to me in that quiet whispery voice that I can't stand, and I just feel like yelling "Don't feel sorry for me, I swear I am doing fine, can you not see the smile on my face!?!?!?".  "I don't feel sorry for myself, why should you feel sorry for me?"  Then it makes me wonder, should I feel sorry for myself?  Should I be dealing with this differently?  Maybe that did it.  I don't know.  Sorry to ramble! Either way, I just wish that others would realize that we are all the face of cancer, even those of us with a smile on their face!

Hi Xtina and everyone,

I know what you mean about the smile on your face. That is how I am with all of this. However, a better analogy of what I'm REALLY feeling at times is...a girlfriend told me this...I'm more like a duck on the pond...floating along looking peaceful and "Ok"...when under water his feet are paddling like hell to stay a float. That is how I feel SOME days...not most...not all. It's been a lot of ups and downs. 

I leaving right now for day 5 of my RADS. Started turning red on day 2. Feels like when you go to a tanning bed and you get a little red the first time and think...oops...better not go for a few days or a week. Well...with RADS...you don't have that lovely choice. Gotta get up in the morning and keep doing it until it's done. My RO doesn't seem concerned and I'm trying very hard not to get freaked out about it...but I know it's gonna get worse before it gets better.

Just putting a ton of lotion on 2 times a day after and hope that helps in the long run!  It's always a weird feeling to lay on that table and have this HAPPEN to your body!  We are strong women and we will make it through! Just have to stand together and hold each other along the way when we need someone to lean on!

Good luck ladies!

Jeni 

6/25 done today. I really enjoyed the weekend off and so did my skin. I am starting to get a little itchy, the skin is on and off sensitive, not much color change. They repeated X-rays today. Aloe vera feels good. Finding the right clothes is a little more challenging. I want really soft and need upper chest coverage and around the neck due to the treatment of the superclavs.

Virginia--sorry you have to be here, but seeing that you are from Champaign made me smile!  My husband and I met at Uof I--you brought up lots of good memories!

Welcome to all the new people... Sorry you are in this mess with us. I really do find this an amazing website and resource. We are all going through this and really understand each other better than most. there are too many of us though. I hate cancer.

Hi ladies- I started radiation on sept 9th. I also started to feel sensitive after the first week, and a burning sensation as i begin the second week. Nothing too bad, but feels a little scary with 5 more weeks to go. I see the RO for the first time since beginning actual tx tomorrow. Hope he remains thoughtful, sensitive and helpful. I also get a little nauseous the next morning - someone suggested eating a dozen Lima beans before tx to help w nausea. One day at a time - sometimes one minute at a time.

Dear xtina and everyone,

  Thanks for your hugs and well wishes!  I was relieved when I read that xtina said she had a tear in her eye when she was in the machine...my first treatment I had a tear rolling down each side of my face, and I remember thinking how bizarre it was to be getting zapped with radiation (something you are told your whole life is dangerous!), and it is such a huge scary machine, and I am alone in there, the technicians say, "Here we go" and then promptly LEAVE the room...my dad used to say, "Whaddya mean 'we'? You got a mouse in your pocket?" : )  They play such lame music, so I am listening to pop music (which I never listen to), so I either try to pray, or try to think about my schedule for the week, or maybe actually listen to the silly lyrics on the radio station, all the time thinking, this has to be a mistake....you don't understand...this is ME!

  I felt the same way when I started chemo....scared out of my gourd each week to go; all the time I was thinking, "Oh, my God, they are pumping POISON into my body!"  Then when I had the double mastectomy, even standing in church for the two weeks before my surgery, all I could think was, "They are going to take a knife and cut off my breasts, and no one can do anything about it!".  But whenever I tried to "flee" in my mind, I realized that I have known three women in my life who chose to do all "natural" treatments....and they all died very quickly, quite young, so here I am, no breasts, getting poison pumped into my body and letting them blast me with radiation!

  My youngest daughter said when she was very little to her sister (when I would occasionally send her to her room if she was being naughty): "Mom thinks when I'm in my room by myself that I'm fine, but I'm NOT fine!"  This kind of describes how I feel a lot of the time.  I can shower, put decent clothes on, make-up on, and smile....so people say things like "oh, but you look really good" or "you look healthy" or "your skin tone looks good", but inside I am sad, mad, anxious, incredulous,etc.  Inside I feel like the "Naked Mole Rat". (google that!) My chest looks like Frankenstein, my toenails are falling off, my skin is dry, I have sores in my nose (of all places!)....but I tell myself, it could always be worse!  At least you're not like the lady who has Stage 4 colon cancer which metastisized to her brain...or like your friend whose breast cancer came back stage 4 and died a couple of weeks ago...hmmm.  Works sometimes. 

  About the age thing, I have eight children (four still at home, homeschooling youngest two), and I guess I still generally feel young (until this year, chemo started Jan. 30th); I am 54 years old.  I went to a support group nearby a couple of months ago because I finally felt ready to talk to some people like me; they were all through treatment already, and were all kind of older than myself; I felt kind of like an outsider. They had been in this group for years and talked mostly about their trips/vacations/work, etc.  I just wanted to speak in a more intimate way about some of the brutality of this path, but I guess they were past that already.  I hope to be some day.

  Thank you for listening to my ramblings...it is hard to talk to friends/family about all this because it weighs everyone down so much because they can't really relate. They are sympathetic and compassionate, but it is too hard for them to really know.

  Love and hugs to all of you, and thank you for sharing your lives with me.  I am real and I am hurting like you!

I stopped by this thread even though as of tomorrow I will have finished my rads two weeks ago!  I was sensitive, had a purple and painful breast requiring some prescription lidocaine and vicodin to be comfortable.  I didn't blister or have my skin break down to weepiness or open sores, so I feel lucky.  Didn't have any trouble until redness started halfway thru, and it was the last two weeks that were a "pain". 

Some of the products I used were aquafore, hydrocortisone cream (over the counter), anti-chafing gel by Lanacane (put this where skin touches other skin to prevent friction), aloe vera gel, prescription Biafine and lidocaine.  I had prescription Silvadene for any blistering.  The last two weeks I stopped using anything oily like the Aquafore because my breast was hot and oils made it feel worse.  The Biafine was the most soothing with the lidocaine.  I layered one after the other.  I used a few "new skin" hydrogel pads bought at Amazon covered with a gauze pad for a few days.  My coobie bra held them in place.

The main reason I was posting was this talk of using a hair dryer on cool.  I just cringed a little because if you slip off that cool button, it will be painful.  I realized drying my hair topless that I had to be very cautious to not blow any hot air in the direction of my poor breast.  Just be careful out there ladies!