Topic: Winter RADS 2012 Club...Please come join the fun!

Dec 2, 2012 06:27 AM Andrea623 wrote:

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!

Dec 2, 2012 07:01 AM Jazzygirl wrote:

Kelmo- it sounds to me like you might benefit from a second opinion around your need for radiation. 

Dec 2, 2012 07:37 AM kelmo2013 wrote:

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.

Dec 2, 2012 01:04 PM Andrea623 wrote:

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.

Dec 3, 2012 04:18 AM Andrea623 wrote:

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!

Dec 3, 2012 06:42 AM Outdamnedspot wrote:

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

Dec 3, 2012 07:08 AM sonson wrote:

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. 

Dec 3, 2012 01:29 PM loveofcritters wrote:

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!!!!

Dec 3, 2012 02:17 PM allurbaddayswillend wrote:

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...

Dec 3, 2012 02:35 PM cowpower wrote:

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:)...

Dec 3, 2012 05:21 PM Aruba wrote:

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!

Dec 3, 2012 10:35 PM Lifeonitsside wrote:

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.

Dec 4, 2012 04:03 AM loveofcritters wrote:

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

Dec 4, 2012 06:12 AM sonson wrote:

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

Dec 4, 2012 06:57 AM Lifeonitsside wrote:

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.