RADIATION QUESTIONS & ANSWERS # 2
I have read the other thread that is like REALLY LONG, and thought beings I'm starting rads on Monday I would start a new thread (being kind of selfish huh). Anyhow I have a few questions that I haven't found on the other thread, and hope (actually know) that you can help me with them. 1. I'm having radiation on the left side, they recommend not expanding my right expander, because of the aim of the beam, so therefore I'm expanded on the left but not the right, did this happen to anyone (because what if I didn't have my right breast removed)?
2. When they tattoo you, is that where the beams will hit our skin or are these marking your major organs as to not hit these areas?
3. I have a lattisimus dorsi flap on my left breast, reason being, they say this holds up best during radiation, anyone have there flap break down?
4. Fatigue, I need to get back to work, is it manageable with some good old coffee?
I'm sure more questions will arise, thank you so much in advance for all your help. I really got a lot from the other thread regarding burns, creams, and of course checking with your Doc on everything.
Peace and God Bless,
~Kari
Comments
-
Kari, I am not an expert but
Kari, I am not an expert but I have been through rads and believe the "markings" are used to line you up with the machine that is also directing the radiation to avoid lungs, heart, etc. Once the markings were done there were x-rays taken that had to be approved by the radiation onco before treatment started. My rads center also took x-rays weekly of the radiated areas. As far as working through rads, I did from day one. I worked a 40 hour week and also continued to exercise, at that point, at least 4 times a week. I do a one-hour aerobic class. I'll be honest, there were days that I'd rather not have been there, but I would just exercise at a lower impact level. Exercise is very good and was encouraged by my onco. However, we are all different and our situations are different so check with your doctors before any exercise. Good luck as you start your rads, you'll do just fine. You have a great attitude and the motivation to succeed. Take care.0 -
Can Answer Questions #2 and #4
Hi Kari,
Question #2 - The tattoos are to align you correctly to the radiation machine so that you are radiated exactly in the same spot and exactly as your radiology oncologist has plotted for every treatment. Radiation treatment is extremely precise. According to my radiology oncologist, there can be a slight overflow of radiation to good cells. They do their best to minimize it.
I found out that there are many different types of radiation machines, so unless we compare the manufacturer and model of the radiation machine, we may not be comparing apples to apples.
The following is per my surgeon oncologist:
"There is so much marketing literature out there that I can understand where you’re coming from—and I can appreciate your need to understand what has been proven to work and how that feeds into physicians’ decisions therapeutic decision making. Just know that there are a number of different types of radiation therapy equipment and everyone markets their machine as the best. (We are approached by sales groups all of the time.) Many of these therapies are good and proven to yield good results, but always know that physicians deliver successful outcomes not the machines we use."
Question #4 - Again, we are all different. I did not have fatigue, but when I sat down to watch TV in the evening, I sometimes fell asleep before bedtime. If I kept moving, however, I had the energy to do whatever I was doing. I also believe that exercise is a big help while you are in radiation treatment.
Good luck.
Lots of Hugs and Lots of Love,
Janelle0 -
Hi Kari,
I had lumpectomy, so can't answer some of your questions, but I think you'll be fine work-wise. Some people do experience significant fatigue, but many do not. I was 4 weeks out from TAC chemo when I started rads and just kept recovering without any added radiation fatigue. Worked full time and resumed my normal schedule. I hope it's the same for you. Your rad tatoos are for positioning the machine. They're small, but I still don't like mine. Thinking of making it into a little heart or diamond or something. Good luck. You're almost at the finish line!
Mimi0 -
I'll take Question #2 for $200
At my rads center, the tattoos were used to line me up with green lasers shooting out of the walls and ceiling. One laser came out of the ceiling and lined up with the tattoo in the center of my chest, just below my cleavage; the other two came out of the walls to my left and right and lined up with the tattoos on my sides. I did rads in November and December, and kept suggesting that they change the laser colors to suit the seasons/holidays -- alas, no one there ever seemed to see the wisdom and the whimsy of my visionary suggestions....
Just like with chemo, everyone reacts differently to rads, but I was one of the ones who hit the wall. I started rads 5 weeks out of chemo, and had worked mostly full-time through chemo, but only made it through 5 weeks of rads before I waved the white flag of surrender and had my doctor take me out of work for the last 2 weeks. The fatigue from rads came on gradually, but it really surprised me how tiring it is to have to go every single darn day, even though I only live 10 minutes away from the rads center. For me, it felt like the cumulative effects of chemo and rads just finally caught up with me.
Traci0 -
Hi Kari
I had lumpectomy and rads, so can't speak to #1 or 3...others have answered #2 for you. I was one of those that had serious fatigue issues w/rads...i actually hit my wall by week 3 and was on half days at work at the beginning of week 4. I was shocked! Thought i would get thru like others that worked full time...in the end, i had to give myself a break and realize that everyone responds differently. I worked half days thru the rest of rads and for about 2 weeks after.
Best of luck w/your rads...I hope you are able to get thru w/minimal fatigue. God Bless...
Julie0 -
Right behind you!
Kari -
I, for one, am glad you started this thread - not selfish at all since sometimes I try to read the threads on my Blackberry and the long ones are hard to get through.
I went in on Wednesday for a CT scan and they made the initial marks on my sides and chest with magic marker and covered them with tape "circles". They told me to try not to wash them off, and I couldn't help thinking of Traci and how mean the techs were when her stickers kept coming off. So far mine are staying stuck, so I'm hoping to avoid the scolding poor Traci had to endure (that she shouldn't have).
Tuesday I go back to get the tattoos to replace the magic marker and hope to start the treatments on Wednesday, but I won't be able to confirm the schedule until Tuesday.
I had a lumpectomy rather than mastectomy, so I can't answer your questions about the expander or flaps, and I think others have already explained the reason for the markings very well, but I wanted to encourage you to keep posting. I'm also hoping to keep working as much as possible, but am tentatively planning to take a week off toward the end of the rads if I get really tired just to rest up. I'll have to see how it feels. I did ask both by onco and my rads doc about taking B vitamins to help with the energy level since I still feel tired sometimes from the chemo, and they both OK'd me to take that. I just started yesterday, but so far it does seem to be helping a bit with my fatigue.
Best of luck - you won't be alone!
Take care,
Cindy0 -
thank Kari
Thanks Kari for starting this new thread! I am overwhelmed by the other one . . . my attention span is too short (I blame it on Chemo . . . ha, ha)! I blame everything on Chemo!! I am have completed 13 of 30 Rads and I am starting to feel that fatigue!! I have my coffee in the morning and one soda in the evening, but man by 8pm I'm DONE! I teach 8th grade, so I am "ON" all the time! I have an 8 year old daughter, so even at home, I am ON all the time! Thankfully my husband has helped out so much! Don't know how any of my "pink" sisters do this alone! Can't help with the other questions, left mastectomy for me and no plan yet for reconstuction.
I have just started being treated every other day without the "bolice ~ bolace" (no clue how to spell it). It is what I call a second skin (a barrier to allow them to control how deep the radiation pentrates in the skin). I am a little bit more "pink" but I have NOT burned YET. My rad doctor says she IS going to burn me. My techs says she is preparing me for the worst and hoping for the best. I am using my lotion (radiaplex) 3 times a day.
Good luck to you next week . . . "one day at a time"!!!0 -
My #1 tip for radsSharon40 said:thank Kari
Thanks Kari for starting this new thread! I am overwhelmed by the other one . . . my attention span is too short (I blame it on Chemo . . . ha, ha)! I blame everything on Chemo!! I am have completed 13 of 30 Rads and I am starting to feel that fatigue!! I have my coffee in the morning and one soda in the evening, but man by 8pm I'm DONE! I teach 8th grade, so I am "ON" all the time! I have an 8 year old daughter, so even at home, I am ON all the time! Thankfully my husband has helped out so much! Don't know how any of my "pink" sisters do this alone! Can't help with the other questions, left mastectomy for me and no plan yet for reconstuction.
I have just started being treated every other day without the "bolice ~ bolace" (no clue how to spell it). It is what I call a second skin (a barrier to allow them to control how deep the radiation pentrates in the skin). I am a little bit more "pink" but I have NOT burned YET. My rad doctor says she IS going to burn me. My techs says she is preparing me for the worst and hoping for the best. I am using my lotion (radiaplex) 3 times a day.
Good luck to you next week . . . "one day at a time"!!!
Since you were thoughtful enough to start a new rads thread, Kari (you're right, it's just too difficult to read threads once they get reallyreallyreally long), I'll post my Number 1 Tip for Rads, which I originally got from Jeanne:
If you're using Aquaphor (which is very difficult to wash out of clothes), and/or they're drawing on you with markers (which can come off on your clothes), Get Thee to a Wal-mart or Target and buy a 6-pack of inexpensive WHITE men's undershirts. Absolutely the best $12 I've ever spent -- I lived in them all through rads. You can wash them in hot water, which is the only way to *almost* wash out Aquaphor, and, if they get too trashed, they're cheap enough to just throw away.
Traci0 -
You know I'm right behind you, Kari!aztec45 said:Glad You Are Doing Well!!
I am glad that you are doing well. As for the fatigue....it is not manageable with coffee. You will have to take a naps when you can and make sure you go to bed early.
P
Pushing you through ahead of me... I'll start on Wed with my tatoos, then probably next Monday with the rads. I sure hope the coffee works on me, I've got to work, too! I'm the one with insurance!!! WE CAN DO THIS< WE CAN DO THIS!!!0 -
Lymphedema and Rads?
Wow! All the helpful tips I am finding on rads today. I had thought I wasn't going to require rads, but last week my onc said I should have them because they reduce the chance of reoccurrence by 30%. So the whole radiation thing came as a bit of a surprise. He said my surgeon should have discussed this with me, but I sure don't remember. I am just so glad this thread got pushed up.
I've got my tattoos and am marked with the markers too. Tuesday I am to have my first treatment. I'm not really nervous about it. I have a really good rad doc. He told me the worst, and then told me that it was the worst, and I could probably expect it not to be as bad as he described. He also said that women are the least likely to complain about any pains, as we have lived most of our lives experiencing menstrual pain every month. He said it is women who are the most likely to be rather stoic, and that is not what he wants. He wants to hear about any little ache or pain I might experience, because it could be the start of something important and he wants to be able to catch any complications as early as possible.
One thing he warned about that I haven't found in this discussion, was lymphedema, and that I should pay special attention to my arm on the side where lymph nodes were removed. They actually measure the arm before starting, so they have a base line to track any swelling that might occur. He said lymphedema usually starts out with the arm feeling "heavy" and maybe a slight ache to it. Has anyone else had this brought up by any of your health care givers in relation to radiation?
I also have an appointment with a physical therapist. I'm not quite sure why anymore, but I think they go over ways to cope with the effects of radiation therapy and what to expect when I go for treatment. I guess I'll find out when I get there. Did anyone else have this before treatment? Or is the clinic I go to especially thorough? Before I started chemo, one of the chemo RNs gave me a tour of the chemo area, and was shown the suite of private rooms where they administer chemo, and answer any questions I might have. It sure helped to know how things were set up before getting a treatment.
So far the only thing I don't like about it is not being able to apply deodorant before treatment. Phew! Nothing like a stinky pit. I feel sorry for the techs.0 -
The silver liningFlakey_Flake said:Lymphedema and Rads?
Wow! All the helpful tips I am finding on rads today. I had thought I wasn't going to require rads, but last week my onc said I should have them because they reduce the chance of reoccurrence by 30%. So the whole radiation thing came as a bit of a surprise. He said my surgeon should have discussed this with me, but I sure don't remember. I am just so glad this thread got pushed up.
I've got my tattoos and am marked with the markers too. Tuesday I am to have my first treatment. I'm not really nervous about it. I have a really good rad doc. He told me the worst, and then told me that it was the worst, and I could probably expect it not to be as bad as he described. He also said that women are the least likely to complain about any pains, as we have lived most of our lives experiencing menstrual pain every month. He said it is women who are the most likely to be rather stoic, and that is not what he wants. He wants to hear about any little ache or pain I might experience, because it could be the start of something important and he wants to be able to catch any complications as early as possible.
One thing he warned about that I haven't found in this discussion, was lymphedema, and that I should pay special attention to my arm on the side where lymph nodes were removed. They actually measure the arm before starting, so they have a base line to track any swelling that might occur. He said lymphedema usually starts out with the arm feeling "heavy" and maybe a slight ache to it. Has anyone else had this brought up by any of your health care givers in relation to radiation?
I also have an appointment with a physical therapist. I'm not quite sure why anymore, but I think they go over ways to cope with the effects of radiation therapy and what to expect when I go for treatment. I guess I'll find out when I get there. Did anyone else have this before treatment? Or is the clinic I go to especially thorough? Before I started chemo, one of the chemo RNs gave me a tour of the chemo area, and was shown the suite of private rooms where they administer chemo, and answer any questions I might have. It sure helped to know how things were set up before getting a treatment.
So far the only thing I don't like about it is not being able to apply deodorant before treatment. Phew! Nothing like a stinky pit. I feel sorry for the techs.
Rad quickly made need for deoderant a thing of the past! btw,Google a study from univ of Rochester med center dated 10-7-02: " common spice may protect skin during radiation therapy for cancer". Run it by your radiation MD, mine approved it and while my skin got very red it never blistered. I had serious fatigue by 4th week, lasted thru 2 wks past treatment. Everyones different, take all the help you're offered and know you're on the home stretch. Good luck!0 -
I am having my planning nextYoucandothis said:The silver lining
Rad quickly made need for deoderant a thing of the past! btw,Google a study from univ of Rochester med center dated 10-7-02: " common spice may protect skin during radiation therapy for cancer". Run it by your radiation MD, mine approved it and while my skin got very red it never blistered. I had serious fatigue by 4th week, lasted thru 2 wks past treatment. Everyones different, take all the help you're offered and know you're on the home stretch. Good luck!
I am having my planning next thursday. not sure when radiation starts. prob soon after. Ihad radiation before. on the other side. I had the first appointment of the day, met my husband withthe kids and took care of them all day. I am sure I was tired. I was also younger then and it was a year after chemo. My skin was rather fried because I had bolus radiation, but thats when I was introduced to aquaphor. I have been told by my PT to pre treat start using it now. I think the tee shirt suggestion is great and will get some first.0 -
Deodorants and Creams
So they told me that I couldn't wear deodorant or lotion before treatment, if this being the case...I understand the deodorant, but when do you use the creams, you have radiation ever day so, stupid ?, did you bring the creams along and put 'em on after treatment? I will be doing rads in the afternoon so this kind of stinks, I put all my lotions and such on after my shower every morning. Also to answer someone else, my oncologist never mentioned anything to me about lymph-edema in relation to radiation either, just in general. I'm still a little numb from surgery, but that arm is giving me trouble already and it's only been a month. Now they say I will start on Tuesday 3-16, no tattoos yet, wonder if they will do those and radiation on that same day, so far rads has kept me in the dark, starting to bother me!! A big thank you to all who are writing on here, it really helps!!
Hugs,
~Kari0 -
Deodorants and lotionspinkkari09 said:Deodorants and Creams
So they told me that I couldn't wear deodorant or lotion before treatment, if this being the case...I understand the deodorant, but when do you use the creams, you have radiation ever day so, stupid ?, did you bring the creams along and put 'em on after treatment? I will be doing rads in the afternoon so this kind of stinks, I put all my lotions and such on after my shower every morning. Also to answer someone else, my oncologist never mentioned anything to me about lymph-edema in relation to radiation either, just in general. I'm still a little numb from surgery, but that arm is giving me trouble already and it's only been a month. Now they say I will start on Tuesday 3-16, no tattoos yet, wonder if they will do those and radiation on that same day, so far rads has kept me in the dark, starting to bother me!! A big thank you to all who are writing on here, it really helps!!
Hugs,
~Kari
Some women have said that rads killed their sweat glands, so they didn't need deodorant -- I'm sorry to say that sure didn't happen to me!
My rads oncologist was fine with my using Tom's of Maine deodorant -- it's not an antiperspirant, so it doesn't work as well as the "real" stuff, but it does help. I used it all through rads, and for a couple of weeks afterwards, when he cleared me to go back to the real stuff. It definitely didn't irritate my skin in any way. You can get it at places like Whole Foods (sometimes Trader Joe's), or order it from drugstore.com.
Kari, I also had my rad appointment in the late afternoon, and the nurse told me I should use the lotions as much as possible, just not within 3 hours of coming to my appointment. So this was my schedule: Used the lotion in the morning after my shower. Took a break at work about 11 and frosted myself up again. Had my appointment at 3:30 every day -- came home and frosted myself up one more time, then went to bed. On the weekends, if I was just hanging out at home, I would often use the lotion every couple of hours -- which the nurse said wasn't really necessary, but it made me feel like I was participating!
Traci
edit: Forgot about the cornstarch. My rads oncologist was adamant about my using pure cornstarch (just from the grocery store) under my breasts throughout rads, which I did morning and evening. I also used it in my underarms, over the deodorant, for a little extra help.0 -
Hi Karipinkkari09 said:Deodorants and Creams
So they told me that I couldn't wear deodorant or lotion before treatment, if this being the case...I understand the deodorant, but when do you use the creams, you have radiation ever day so, stupid ?, did you bring the creams along and put 'em on after treatment? I will be doing rads in the afternoon so this kind of stinks, I put all my lotions and such on after my shower every morning. Also to answer someone else, my oncologist never mentioned anything to me about lymph-edema in relation to radiation either, just in general. I'm still a little numb from surgery, but that arm is giving me trouble already and it's only been a month. Now they say I will start on Tuesday 3-16, no tattoos yet, wonder if they will do those and radiation on that same day, so far rads has kept me in the dark, starting to bother me!! A big thank you to all who are writing on here, it really helps!!
Hugs,
~Kari
I started taking my
Hi Kari
I started taking my shower at night, then put a lot of cream on. I used Eucerin along with aloe vera gel and I got Carrasyn from my rad. doctor. I was told not to put anything on 2 hours before treatment. I put another layer on after treatments before getting dressed. I finished rads on Jan. 19. The radiation made it so I dodn't sweat under my arms. I still don't need deorderant yet and the hair still has not come back.
I got the marking tatoos then the following week got exrayed, then the following day started the radiation.
Make a list of all your questions to ask the doc. or techs. I saw a nurse once a week and the doc. once a week (on different days) to make sure the skin was holding up. I peeled a bit but not bad.
Now about the lymphedema, the nurse told me to use the arm but don't abuse it. If I had 5 boxes to move, move 1 at a time not all 5 at once. I think it's a common sense type thing. I told her that I only had 6 nodes removed and was told you can get lymphedema with only one node removed so be careful. Did your surgeon give you arm exercises to do? I had to crawl my arm from the side up a wall 2-3 times a day to get full range of motion back.
Rads really was not as bad as I thought. The worst was laying there being exposed, I'm a very private person, but I just kept repeating "die cancer die" as I was being zapped. That helped me get through it.
Good Luck to you
Sher0 -
Body washSher43009 said:Hi Kari
I started taking my
Hi Kari
I started taking my shower at night, then put a lot of cream on. I used Eucerin along with aloe vera gel and I got Carrasyn from my rad. doctor. I was told not to put anything on 2 hours before treatment. I put another layer on after treatments before getting dressed. I finished rads on Jan. 19. The radiation made it so I dodn't sweat under my arms. I still don't need deorderant yet and the hair still has not come back.
I got the marking tatoos then the following week got exrayed, then the following day started the radiation.
Make a list of all your questions to ask the doc. or techs. I saw a nurse once a week and the doc. once a week (on different days) to make sure the skin was holding up. I peeled a bit but not bad.
Now about the lymphedema, the nurse told me to use the arm but don't abuse it. If I had 5 boxes to move, move 1 at a time not all 5 at once. I think it's a common sense type thing. I told her that I only had 6 nodes removed and was told you can get lymphedema with only one node removed so be careful. Did your surgeon give you arm exercises to do? I had to crawl my arm from the side up a wall 2-3 times a day to get full range of motion back.
Rads really was not as bad as I thought. The worst was laying there being exposed, I'm a very private person, but I just kept repeating "die cancer die" as I was being zapped. That helped me get through it.
Good Luck to you
Sher
(Okay, ladies, just tell me to shut up if you're getting tired of me and all my tips! :-)
I'll emphasize again how important it is to always ask the doctor or nurse BEFORE using anything, anywhere near the treatment field while you're doing rads. But it's sometimes helpful to have some ideas:
In my case, the nurse told me to "use something gentle" in the shower, but didn't really have any specific product recommendations. ChenHeart on this board had recommended unscented Aveeno bodywash, so I asked the nurse, how about that? I used it all through rads, and it was very gentle and soothing.
Another Unpaid Product Endorsement Brought to You By Traci,
:-) Traci0 -
love the suggestions...TraciInLA said:Body wash
(Okay, ladies, just tell me to shut up if you're getting tired of me and all my tips! :-)
I'll emphasize again how important it is to always ask the doctor or nurse BEFORE using anything, anywhere near the treatment field while you're doing rads. But it's sometimes helpful to have some ideas:
In my case, the nurse told me to "use something gentle" in the shower, but didn't really have any specific product recommendations. ChenHeart on this board had recommended unscented Aveeno bodywash, so I asked the nurse, how about that? I used it all through rads, and it was very gentle and soothing.
Another Unpaid Product Endorsement Brought to You By Traci,
:-) Traci
Traci, I see my oncologist tomorrow and the radiologist oncologist Thursday-don't know my "Plan" yet, but I love to hear all the thoughts from all of you. It helps me to be more prepared before I see the docs and have some questions ready...my list is growing. It will help me so much to make informed decisions -well, that is the idea anyhow(hope I can).
mk0
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