October 2011 Rads

5kidsMom

Kay I'm so glad you said you think your skin might be pinking up already.  I was feeling like a hypochondriac!  Had my first rad yesterday too, and my skin feels a little sting-y!  Not all the time, but it doesn't feel right.  My arm is sore too--surgical side.  I think its from keeping it over my head for so long--1 1/2 hrs Monday, then 1/2 hr yesterday.  Never got full range of motion back after my MX so maybe this is physical therapy--LOL!

perts1

Mine is 38.  I thought I was through menopause but I've really had hot flashes these past few weeks.  I did take estrogen but quit about 6 months ago.  The original plan was lumpectomy and snb, 7 weeks of radiation & I'm done.  Yesterday that changed when they read my oncotype dx & said I now need chemo first.  It was just such a shock!   I guess I need to get out of here & go to another thread about chemo (drat the luck).

dawmson

Had an appt with the MO yesterday - he said women with smaller breasts (less fat content) have less scarring from radiation. Anyone else heard that? I'm a 36A so I'm hopeful there's one good thing to come from my flat chest.  

I got my start date yesterday too - I start next Wednesday for 33 total treatments.  

nancygv55

MinneJen, I live in Golden Valley, where are you and where have you been going for surgery and treatment?  I'm at Park Nicollet and just had my 3rd rad treatment (31 to go!) at Methodist Hospital.  You have been through a lot and I hope you are doing ok.  This is a great place to be with wonderful, supportive women who have terrific advice. I'm here for you!

MostlySew

Hi 5kidsmom and Kay,

I was also told I wouldn't need to use anything for about 2 weeks and turned red after the first session! By my second session the techs said they hoped I was using lotion (I was) and after my 3rd session on Dr day my RO told me I had radiation induced inflammation. Only about 10% of us get that! Anyway, having tried aloe Vera gel, aquaphor and miaderm, I've found that for me, I can knock the heat down to just about nothing with the aloe Vera. The others don't really do anything for the pink color and heat it generates.

Oh, and now, at 15 sessions, it still gets hot and for some reason my nipple is changing color and getting hard but no burning yet so that initial reaction wasn't a precursor of worse than usual things to come, luckily as I worried about that. The fill in RO lat week was surprised at how well my skin is doing since I am quite fair ( she thought) so I also don't think skin color necessarily makes a difference in your ability to burn.



Perts, I'm so sorry about your oncotype results. What a difficult decision facing you. Take a deep breath and listen to your heart. Take a few days to digest it. I know you'll be able to face it, and don't worry about the tears and anger and every other emotion you might be feeling, I think it's all normal. We're here to listen if you need us. Good luck.

lilylady

 I am hoping to join this group-I am still waiting to be released from the BS (after 8 weeks and still draining). I have met with the RO and they only do planning/sims on Tuesdays. So every time she delays me I miss another whole week. I will be 28tx/no boosts. My return to work date is Nov 1-was supposed to be done by that time-instead I haven't even started.

Robyn6463

Hi - I'm new to the group, lumpectomy and snb on 7/12, with 4 additional nodes removed. I have my last chemo treatment, taxotere & cytoxin on 10/14, and my simulation and CT on 10/20. I'm not sure of my start date, but they said my end date should be between 12/16 and 12/23. I INSISTED on being done before New Years' and they have kindly accomodated my "request." 

Perts1 and Dexxy - ME TOO! I actually met with the RO back in July and was ready to start, but then my Oncotype came back at 21, in the grey area. It took a lot of thought, and two opinions, but went with the chemo decision when my GP and Oncologist both supported it. Mostly due to my age, I'm 48. So now the RO I met in July has moved on, and I'll be meeting a new one this time! 

I'm very upset about the tattoos! After all the good work the surgeon did trying to minimize the scars, I feel like the tattoos are just added reminders of this nightmare! But they insist. 

5KidsMom - You said your hair is growing back already? When was your last chemo??? I CAN'T WAIT TO HAVE HAIR AGAIN! 

I'm very interested to know how the port removal went for everybody? I've had a terrible time with mine all along, it's been problematic from the beginning and I can't wait to get rid of it, but I don't feel like it's actually healed yet, and now they have to take it out. Do they take it out in the Operating Room also? I hate this thing. 

My tumor was on the right, so no heart worries, but I've got a weakened left lung already, and am concerned about potential damage to the right one. I guess I have to take the risk. 

Ceeztheday

Robyn - I wanted you to know that my tattoos are teeny, tiny. To me, they have not been a reminder. Best of luck and please post here when you need to. Everyone here knows the feelings and the roller coaster of emotions.

Elizabeth1889

Perts1:  I am sorry that you will need chemo.  I, too, thought I would be able to skip chemo, but the final pathology found a positive lymph node.  Chemo was not nearly as bad as I feared.  I had four rounds of taxotere and cytoxan every three weeks and for the last two weeks of each cycle, I felt fine.  Wishing you good luck with your journey.

Kay_G

Sorry about the chemo Perts1.  I did 4 rounds of DD AC and one taxol then switched an did 3 taxotere.  It is doable.  Wishing you much luck too.

I agree tattoos are very small.  I think when I'm done, I won't notice them any more.  RIght now, they're hard to miss since the techs highlighted all around them with a sharpie so they can find them easily.  Still have my port.  I'll be gettin Herceptin until May, so will have it for a while.

Mostly Sew, I am using Aloe Vera too, and think I must have the same thing as you.  It did seem to help get rid of the pink.  I don't have a nipple at the moment so don't have to worry about it changing color.    There's an up side to everything I guess.

dexxy

rad #3 done

5kidsMom

Robyn welcome!  I was one that really didn't want the tatoos, and went with sharpie/stickers for a week.  The therapist finally talked me into them, though there were tears on my part.  One therapist completely understood about not having the permanent reminder, and they were both really sweet about it.  I went with the tatoos, because I wanted it all to be very precise.  They are radiating all around my heart, and I'd much prefer to be as near perfect as I can!! 

Growing hair back. . . I did!  Yay!  I had AC x4 to begin with, then surgery, then 12 rounds of Taxol.  I started growing hair back while healing from surgery, and didn't lose it again on the Taxol.  I think my body was so traumatized by the AC that it didn't mind the Taxol  

good luck!  Off to get my rays now

Granuaile

Hi there everyone,

 I go in for my scans/simulation on Tuesday, 10/11, and then start up in a proton radiation study on 10/19. I'm excited - get to do this because I decided against reconstruction, and apparently the use of proton radiation means more targeted treatment and fewer side effects. I'll know more when I meet with the  RO on Tuesday. 33 treatments, I believe. Looking forward to being past this and just needing to go in for herceptin every three weeks. 

pam53

Had #8 of 34 today.  I am starting to get a little pink but the color lessens by the next morning.  I have been feeling itchy today.  Have been able to avoid scratching so far.  I used lotion (Aveno) four times today.  It does help a little with the itchy feeling.

MinneJen

Nancygv55-

I live in Burnsville and also have been going to Methodist for surgery and treatments. I just pushed my rads start date back to 10/17 as I currently have a cold that has developed into an upper resp. infection. I wanted to make sure I was feeling somewhat healthy before starting radiation. My appts will be at 3 pm, when are yours? Maybe we'll run into each other at the computer check in ! Hope you are doing well!

Kay_G

Hi Granuaile!  That's interesting.  There's a huge proton lab in my cancer center, but no one mentioned anything about it to me.  Maybe because I was already set to do the reconstruction when I met the RO.  Sounds like a good program.

Dexxy, I'm right with you #3 done last night.  Is anyone else getting bollus (sp.?)  Every other treatment, they cover me and tape it down before treatments.  I asked why and they said I was getting bollus every other treatment.  I will have to ask RO or nurse about it, no one told me anything about it.   Using Aloe and skin doesn't look pink any more.

Snoopy73

Hi ladies; got my 5th rad this morning, so 1 week down 5 more to go!!! normally have my Rads late in the anoon (4.30pm) so i cna go get my kids then go home after, but today had to change schedule because i have an ppt with my BS in the anoon and her schedule is so TIGHT I have not seen her since my surgery in May!!!! So far no skin reaction, just sooo TIRED physically & mentally!!

nancygv55

MinneJen,  i'll send you a private message so we can chat about this offline.  I'm sorry you are ill and hope you feel better soon.

Granuaile

Reading through the literature, it looks like I might be having fewer treatments with the proton radiation than I would with traditional. Hearing about all of the burns, blisters, etc. really worries me. I really appreciate being able to benefit from listening to everyone's stories.

rn4babies

I have my first appointment with the RO on Monday. I'm just anxious to get on with this and get it over with. Can anyone tell me what to expect at the consultation?

CarylC

Hi, ladies.  I'm also scheduled for rads this month.  Actually I should have started this week but after making the first mold, they couldn't get me lined up right, so they had to make another one and we'll try to line it up right again next week or the week after that.  I've been done with chemo for quite a while but I had to have abdominal surgery, so we held off on radiation until that was done and then I healed from that and I'm starting to wonder if the time lapse even makes it worth while.  I'm not sure what the efficacy is if you're out 10-12 weeks after chemo before you start.  

 All I do know for sure is that I'm supposed to get 25 treatments with a bollus but I'm not sure if the bollus will be used each treatment or not.  My RO said because they are radiating the skin they use the bollus to absorb some of the radiation and protect the skin.  I also know they are radiating from somewhere around my collarbone and down but he did say they are not doing the internal mammary nodes because of the risk of lung damage which was fine with me.  I just want to get it over and done with!

Kay_G

CaryIC, welcome!  Everyone seems to know more about their treatment than me.  I guess I didn't know what questions to ask.  I am getting bollus too.  It is every other treatment and they cover me with something.  The reason I know is I asked the techs at the second treatment why they didn't cover me and they said the bollus is only every other treatment.  So you just explained that to me.  Thanks.  I think the rads are still worthwhile even if you are starting a little late.  Talk to your RO and see what he thinks.  I would think with the SE's and everything that can happen during chemo, it must have to get put off some times.  It's been a long while since I had chemo (I had chemo first and then surgery), so I started 10 weeks after chemo, 7 weeks after surgery.

First week down (although started Tuesday, but still)!  I am really surprised that other than the sound, I would not know anything was happening.  I think putting the lotion on is defininitely keeping my skin in better shape.  I am going to ask the RO if eucerin would be good for it since the physical therapist wants me to use that on my arm for the lymphedema.

It's going to be a beautiful weekend here in Philly!  Hope everyone gets the same and enjoys it! 

Robyn6463

Kay - Its a beautiful weekend in Vermont, too! I've just checked your profile, and it appears we have more in common than BC...both accountants, and I'm very familiar with 1963! Hate to meet this way, but it's nice to know you! Every time I see the docs and ask questions, I preface them with "I know I'm an accountant, not a doctor..." How much of this stuff are we supposed to understand? I mean, they can't do their own taxes, right? Or even insurance claims! But we have to learn on the fly! I've got some personal experience with this, having cared for my aunt through all this, but it's been over 20 years, and things are REALLY different. Chemo and radiation don't compare to what they were like in the 80s! THANK GOD!

Kay_G

Nice to meet you Robyn! I know I don't understand much unless they talk about statistics, which they never do with me. I don't think I want to hear anything in those terms though, too cold. And medicine is an art, not a science right? I do ask some questions, but in general trust the docs and do what they advise. They haven't ever put a question to me yet and said it's up to you. I guess because of a combination of tumor size, grade and nodes involved.

We have another thing in common too, my daughter's name is Robyn. Great name!

Ceeztheday

Hello ladies. First, let me apologize in advance for my rant. Before I was dx, I felt healthy and full of optimism. After the dx, I was concerned, but still felt healthy and hopeful. After the surgery, with the margins clean, I again felt healthy and full of hope. I did not have to do chemo for which I am very thankful. Then, I started Tamoxifen and have had only minor SE so I felt healthy and proactive because I was doing something to prevent recurrence. While it was an emotional roller coaster, I NEVER felt sick during any of this. Now, since rads started (I've completed 26 of 35), I feel sick, sore, sad, and unhealthy. It is a feeling like I've never felt. Like I'll never be well again. I know it's stupid and not logical, but it's my emotions overruling my brain. I now wish I had done the MX instead of the lumpectomy, if I could have avoided rads. I'm so sorry to put this off on everyone, but I know that many of you know how I feel. I wanted to put something on this discussion group because I needed to take off my happy face for just minute (I always feel like I have to have the happy face for my friends and coworkers). Thank you for listening. Just getting it out has made me feel much better. Onward and upward...

katehudson25

Good luck everyone. I am 17 days post rads and radiation was a breeze for me. I am extremly fair and I never peeled, blistered, had pain or swelling. I did get red and I had some itchiness. The itchiness is gone now, and only my boost area is a little red, but it is fading every day. I moisturized about 6 times a day. Udderly Smooth body cream worked great for me and I also used Miaderm. 

Natters

Kate, thank you for being so reassuring. It really gives me hope that I can ave some sort of normal life the 6-7 weeks I'm going to do rads later this month.

MostlySew

17 of 33 finished and I'm still learning lessons about this rads business! Last night I started getting pain and quite a bit of rash under my arm and on the top of my breast. I'd been fine until then. I applied Aloe at least 3 times if not 4 during the evening and got it to calm down and stop hurting. This morning I was great until I spent the day out with friends and couldn't apply lotion at all and, yep, pain's back this evening! So, having now applied Aloe 4 times since 4 pm I've got it settled down again. Guess I won't be spending the days unable to apply lotion anymore because the pain really isn't worth it. I do hope this isn't a harbinger of things to come.



The good news is that I seem to have more energy now than I did for the first 3 weeks, so I hope that continues.



The weather here in Northern Calif is just beautiful and I've had lunch outside the last two days. I hope everyone else is enjoying their weekend.

Joan811

Hi all,
I've learned a lot reading your posts...
After several weeks of total confusion, I plan to move on to rads w/o chemo.  (Oncotype score 13)
I will call for appointment on Monday.  A few questions -
I also am concerned about the left side radiation - has anyone addressed this with RO?
I plan to work full time and my medical center is about 1/2 hour each way.  How much time will I typically need for rad appts?
My worst fear?  I am claustrophobic and hate to be confined or lie still.  How long is the actual procedure each day? I have left side lumpectomy and zero node involvement.  Do they irradiate the nodes anyway?  I guess I'll get used to it, but if anyone has any suggestions, I'd like to hear.
I am not sure I'll make the October cut, but am hoping so I can finish by end of year. 

MostlySew

Hi Joan811

Welcome, although I'm sorry you have to joon under these circumstances. Your attitude sounds great though (I took a peek at your bio) and I think that's important. I don't think I can answer very many of your questions, and your Radiation Oncologist and staff would be better for that, but I'll try.



My cancer is in the right side,so I don't know about that but there have been other discussions about that. I do know that mt RO mentioned how careful they are these days to avoid as much lung as possible ( they do hit some) and avoid all other organs.



My time in the office varies a lot. If it's doctor day, plan on an hour. If it's x-ray day, plan on just a few extra minutes unless you're just beginning rads since the first set took quite a bit for me. Now my 2 x-rays/week don't take extra time at all. Some days they're di inning behind, some days not. The quickest I've ever gotten out of there is 22 minutes door to door, but that's rare. 30 to 45 is more likely. Take a good book or your needlework or something.



I dont think claustrophobia will bother you as this is just a large disc shaped thing which hovers over you for 1 to 2 minutes then moves under and to the side, at least mine does. There's nothing enclosed. You do have to stay totally still but it's only a few minutes. Check if you can bring an iPod some let you do that. Just don't dance to the music!



Yep, they're iradiating my nodes anyway. I think that's standard.



If you keep watching this thread and maybe the September one, you'll pick up some great hints. Just remember, everyone's journey is different but we're all on the same path.......the one to being well and getting on with our lives! Good luck and be sure to let us know how you're doing.