Calling all TNs
Comments
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Annie,
The pre-radiation CT scan is done so that your Radiation Oncologist can map out your specific radiation plan. They make precise measurements of your chest and underarm, the surgical area involved, and also your internal organs in the field of radiation. All this info is fed into the computer that runs the radiation machine. The tatoos are used to mark the radiation field and to help the techs line up the field exactly each time. You will receive radiation to this field exactly the same way each time, until the last week when you get your "boosts". For the boosts, the techs will again get you lined up, but this time they will attach a template to the machine head that has been fashioned in the shape of your unique incision/scar area. The template keeps the radiation focused in the scar area, only.
You will see that your "suntan" is a rectangular area that deepens in color, each time, because there is no wandering off from this programmed field. You have to raise both arms above your head during radiation, and when you look at the suntan in the mirror, you will have to do the same, in order to see the rectangular shape.
During radiation, you lay on the machine's table, and the machine arm/head moves around you. It is programed to 'shoot' you from different angles, so that the beam areas overlap and give complete coverage. I was 'shot' from the left side above, the right side below and then overhead above my chest. Since you had a mastectomy (me, too), they will be radiating your chest wall. Our lumpectomy sisters will have their breast radiated, and the pattern may be slightly different. Also, the table that you lay on will move, to help position you. The techs will talk to you from another room, and they monitor you by way of a camera and microphone/speaker. You will be alone while the radiation beam is activated, but they will come in and change things on the machine for each position. After the first few sessions, you will pick up on the pattern, and know pretty much how long each one is. You need to stay still, so that the field isn't shifted. In fact, when I first layed on the table, they told me not to move, and they got me situated by moving me with the sheet that was under me on the table. You really don't do anything, but lay there! And don't plan on a nap!!! Each radiation beam shot is a minute, or so, with the whole process maybe 10 mins. It took me longer to drive there and back (I live about 10-12 mins away), than the actual treatment took. Of course, you have to factor in waiting time, and undressing and dressing time. You will disrobe from the waist up, and be given a gown or something to cover you. They gave me a towel to coverup - I was shocked at first ,but then it was no big deal! It is only the techs and you in the room. You don't even have to take your shoes off.
Don't be shocked by the first session...they may draw on your chest and take a photo. This is to have a picture of the radiation field on file, and it also helps the techs to explain and show you what's going on. I accused my tech of being a graffiti artist at heart!!!
As to those tatoos, they are just little black dots. They are permanent, but do fade in time. Mine have changed to blue in color. Ick! They first looked like blackheads to me. I told the tech I was going to get a flower tatoo to hide them. He thought that was funny, but told me "seriously" not to cover them up, in case I ever needed radiation again. You can't be radiated in the same area again, and the dots show the borders of the field, so future techs can be aware of that. He said to make the dot the center of a flower, so that they could be easily found.
Here's an idea for you artists out there...come up with a tatoo design that is pleasing to look at, but that is appropriate for radiation guidance!
And make sure to treat your skin gently, keep moisturising, and keep hydrated.
I guess what I had originally planned to say way back at the beginning of this post was...don't be waiting nervously about your CT scan results. Depending on how busy your RO is, it may take a while for them to get your plan made, and there are no results to give to YOU, anyways.
~ Shar (finished rads 3.5 mos ago)
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I saw this on Facebook today and thought it might be helpful for anyone in treatment. It's so important to stay hydrated and here are the top ten foods to help:
I ate my weight in watermelon last summer during chemo!
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Oh Hope,
Praying that your MO's "thoughts" turn out to be wrong. Those brain MRI pics can look pretty crazy to anyone other than a radiologist, especially a neuroradiologist.
You are a BC Warrior, and we are all here to support you through whatever BC tries to throw at you next. Take good care of yourself, stay strong, and keep in touch.
Thinking of you ~ Shar
P.S. Continue to pm me anytime, Friend - to rant, cry or just chat.
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Tookybum(Great screen name-would love to know the story "behind" it!) So very glad you stopped in. Freaking out is normal. Things will get better as a plan is put in order and you get a better understanding of what is going on. That being said, Please, Please be careful where you do your research. BCO is a great place to start and of course your Onc. BUT stay away from most of the internet. Most of the data is old and no longer accurate for todays diagnosis of TN. And it can scare the crap out of you. And although we are not oncologists here on this TN thread, the women here are very knowledgeable and willing to help in anyway they can. Ask a question and someone will be along with advise or a similar experience that you can relate to.
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Michelle and LM50 - Thanks for the education. I still wonder about the PET scan though... Both the Surgeon and my Onc said they didn't think it was necessary, nor do they do markers. Hmmmmm, gonna ask more question!
Mags - Yeah!! Can I ask how they know if there are circulating blood cells? Is it a blood test that I will have after treatment (17 from now :-().
Naan - How confusing.... I hope you get solid answers soon!
Newbies - You've come to the right place. I found security in this forum last month and cherish everything on here to such a deep degree. A totally phenominal TEAM of women!
Funny story to share with you all. We have a continuous round of storms that come through our area. My Hubby was preparing dinner and went down to the dock to fire up his 2 week old grill only to find it was gone!! Of course we assumed the worst and accused some poor stranger of stealing it. As he stood there in wonder, something shiny was in the water. The wind had thrown his 100# grill right off the dock so now it's at the bottom of the lake with fish swimming around it! Not sure how we are going to get to out yet, but that's a boys job ;-). Anyway, we had oven baked chicken instead.
Hugs to all! -
Jazzy - how close you are followed depends a whole lot on your staging. I'm stage IV, I'll probably have PET/CT scans every 3 months for the rest of my life, unless something miraculous happens. And my tumor markers (CA27.29) will get checked after every couple of chemo cycles. If you are early stage, you won't be followed nearly as closely. And that is funny about the grill. I could see that happening here - we are also on a lake.
Hang in there, Hope...sending more positive thoughts your way.
Tookybum - we are here for you! Rant, vent, cry, get mad! Don't hold it in!
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JAN69 - Missed your "Life is good" paragraph. Glad to hear your DH is stable and thT you don't need a hysterectomy and LOVE PBJ's! My Hubby will only let me eat Organis peanut butter, but I sneak his Jiff Xtra crunchy more than I should :-)
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Makes sense about the Staging, but I still wonder how they know that therE isn't something elsewhere. I struggle to understand how they know it started in my breast, and how can we be confident it's nowhere else. Several months ago I started having pain in the ball of my foot, then about 4 months ago my elbow started hurting and I blamed that on the keyboard, about a month ago an odd bump grew in the palm of my hand...... I am not usually freaky like this, but I can't stop wondering if it really started there. Normal or weirdo?
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tooky! It sucks to have breast cancer...sucks..that is a given...but this "triple negative' is horrible stuff drives me nuts...I hear it everywhere...my good friend found out she is tn (she's on her second chemo)...and she really didn't start to freak until she found out she was TN...I asked her to stay away from other websites than this one...I asked her to talk to her onc to see what he/she thinks...ask your onc about survival rates...reocurrence rates..try to ease your mind a little...there are still alot of us still around..including some stage 4 ladies....its alot to take in..any cancer diagnosis is..but please realize odds are..you will probably be ok...hang on to this..
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Jazzy- Everything you are feeling is normal. We all worry about every little ache and pain. My MO says that if I have any pain or feel anything "out of the ordinary" that lasts longer than 2 weeks- get it checked out! My MO asked for me to have a PET before I started chemo, but my insurance denied it saying stage 1 did not need a PET. I wish even us stage 1 and 2 gals got scans every now and then!
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TifJ - Doesn't feel normal, but I get where you are coming from.....still freaky!
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I just mean freaking out about things is normal!!
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Titan,
Thanks. That was very reassuring. I was freaking out a bit last week. Saw my onco on Monday and asked him what he thought about recurrence. He said he thinks I've done everything I could and that they will be keeping an close eye on me and that I should be OK. You are right about reading other sites. The info is pretty scary and makes you freak out and question everything. Statistics are really only predicting the probability of one outcome or another. I have decided that I'm healed and the rest is in Gods hands. I will exercise and eat healthfully (as I did prior to dx) and pray for the best. When it comes down to it, I don't want to live my life in fear, I want to be healthy and happy and successful. I am certain that all of us want health and happiness. We can't let cancer define us or dominate our lives. Cancer is not who we are, it's only an obstacle we will overcome.
T -
Bernie Ellen, where are you? We could use some comic relief.
Hope, I've been thinking about you all day. You're in my prayers.
T -
Naan1004 - glad I didn't offend you.
Mags - wonderful news!
Tookybum - welcome to the family, (and it is family here). I remember when I was first dx'd, all I kept hearing was how "aggressive" it was and thinking "well sh*t, I'm gonna die". I am so thankful I found this thread, because this is where I really learned about TN. (not from my doctors). Yes, your life will suck for awhile with chemo, surgery and possibly rads, but it is all doable. Please, as you have questions, come back, and the group will do there best to answer them. Take it one day at a time right now and try not to overwhelm yourself.
Hope60 - Praying for you and looking for an up date.
Wish me luck ladies - first Mammo tomorrow! And after my appt, I have a great treat in store! -
Help me understand this. I am on the second week of the second round of Xeloda and am having more and more dry heaves than EVER in my life, I cannot find that this is a SE of Xeloda. My MO seems to think it is the liver trying to fight, I usually do not have any nauseaus feeling before this starts.She has me takiing Reglanand zofran, but. it feels more like muscle spasms to me, I am up to 4 times today and carrying a bucket in the car with me when we go any where we go. I feel like I am loading a diaper bag for big girls every time I leave the house. will this ever stop?
becccad
//f
PS!! Cancer Sucks!!!!! -
beccad - I hope someone comes along soon to offer some help. This really sucks. I know nothing about Xeloda, so not sure if this has happened to others. Did you ask the stage IV ladies? Someone there also on Xeloda?
So sorry you are having to put up with this.
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Good evening Ladies
Mags - hope your 3 monthly f/up went well. I would be a nervous wreck like you as well.
Onvacation - when do you start rads and do you have to go away from home for it or do you live near the hospital.
Tookybum - welcome. Just love the name. I agree with NavyMom we are not oncologists but the ladies on here have been through or are going through all the side effects etc and the oncologists forget to tell you everything, or don't think of it. Everyone of these ladies on here give good sound advice and they do know what they are talking about. Even if one hasn't experienced something another person will have and will be able to help. I have learn't more on here than ever than with my doctors, not that the doctors are not good but just that as I say they don't think of telling you everything you will go through.
Ksteve - Jan69 - I felt so much better when I read that you are 3a, stage 3. I thought I was the only one and I was worried about it but to know that you ladies are doing so well it gives me so much comfort to know that.
Jan69 - glad your DH's leukaemia is stable and you don't have to have a hysterectomy, woo hoo. No Jan I won't take my work to the hospital with me. I actually can't as its all set up from home but I really feel as if I need a break from typing at the moment because it is so stressful with my hands being like they are. I think the break will do me good.
Spica16 - thank you for all the information on radiation that was great and put my mind at rest. Just one other thing though do you gets nauseous or sick with radiation at all.
LuvRVing - thanks for all the lovely food pics. I eat a lot of what was on there especially water melon, just love it.
Jazzyj - I have the same fears as you. How do we know there is nothing happening in the blood with any rampant cells. And yes where did it come from. Its quite frightening. I would feel better with 2 monthly benign tests. Yea right, just hoping. There is nothing weirdo about you at all, otherwise we would all be weirdo's cause we have all been there. It's just normal fear and freaky feelings of what if, that the ladies tell me will lessen in time and we will go on with our lives as normal but some days it overwhelms me.
Kathy - good luck with your mammo. What treat have you got up your sleeve for you. I hope it's nothing to do with that handsome looking dude that lives three feet away from you!! Is it??
Ladies have any of you had terrible itchy spells with either chemo or taxol. Everyday I have a spell of it where everything itches, arms, legs, hands, head etc It nearly drives me nuts. I seem to be allergic to everything just lately. Pity I'm not allergic to typing although I can't even do that right at the moment.
Well the old fellar is nearly ready to go with the cafe. Just gotta wait for the till to arrive and the eftpos and as soon as the other lady is gone we can get in to clean everything. He's so excited, bless him. I think he's even thinking of it in his sleep cause he keeps mumbling lately.
We haven't heard from Inmate lately and do you know who we haven't heard from for a long time LRM. I wonder what she is up to.
Have a good evening ladies. Catch you later. Warm hugs. Annie.
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Morning Ladies,
Annie, I had horrible itching during chemo. Don't worry, it should start clearing up soon.
Beccad, So sorry your having such trouble with xeloda. I hope you get some info that helps soon.
I feel like I can't keep up anymore. For whatever reason my anxiety has really kicked into high gear. I've been trying to decide if it's time for me to take a break from the boards but at the same time I just can't stay away. Everything seems to hit me when I lay down to sleep. The dark thoughts rush in and my anxiety sky rockets. I also think I'm going thru a very selfish stage of Why me??? Ok, enough of my whinning.
I hope everyone has a wonderfull day, free of SE's and dark thoughts.
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Heather what you are going through is normal. You have just started a new job which is very stressful and you will be learning heaps as well. You are missing hubby and your babies and still getting over the side effects of cancer, it takes a long while to get completely out of your system you have told me that. With all that you have been through no wonder you have anxiety. This will pass. You can't leave the board we would all miss you so much. Your advice is so very valuable. Have you been working long hours, not leaving at the right time. May be you just need to say I have done a good days work, its time for me now and go see some of those new friends you have made or do something you really enjoy. I feel sure you will perk up no end when your hubby arrives. Just hang in there girl things will be better in a day or two.
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Heather - I second CS's advice!
CS - I just had to post that picture on Facebook and on my blog. Thank you for finding just the right picture with just the right sentiment! That one really spoke to me!
Beccad - so sorry you are having trouble on Xeloda. Are you taking it within 30 minutes of eating? Sometimes it helps to eat half your meal, take your X, then finish the meal. It's important to not take it on an empty stomach. The RN from Genentech explained to me that if you don't have food in your tummy when you take X, you end up with too much of it in your system too quickly. And of course, be sure you are getting plenty of fluids. See my picture of high water-content foods above. I hope this helps a little. And if you haven't already found us, please join us on the "All About Xeloda" discussion:
http://community.breastcancer.org/forum/8/topic/772113?page=60#idx_1785
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Hi Ladies- I have been on a BC thread vacation, but am back. I almost 8 weeks out from rads and pretty much healed up on the outside. I am dealing with swelling (lymphedema) in my radiated side and back. Thereapist has put in a note or a pump devise so I can get the pain under control.
The new thing I have been dealing with is belly pain and loose bowels for 5 weeks or so. My primary ordered blood work- liver levels are creeping up, so he ordered and ultrasound of all internal organs including liver. 1 week later after several calls to his office, the nurse read me what he noted from the radiologist. they did not get a clear picture, so it was inconclusive. She said the doctor recommended to wait 3-6 months and do blood work again? I said excuse me? Wait? Really? I asked about another type of test or scan to be sure nothing else is going on.. she said, well he did mention a CT scan if you wanted, but we would have to get insurance approval.. ok so do it-- good grief, am I being over causious or is my doc on crack? Very nervous and stressed about this.
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Wow.. chatty bunch of ladies - we sure do talk a lot - I am not even going to try and respond to you all, but am thinking of you all.
Hi to the new ladies - sorry you are here, but really this site is so wonderful and calming. Wonderful, knowledgeable ladies here with great advice.
Hello and happy dancing for all those with good news.For those with maybe not such good news - thinking of you.
Hope you are all managing to have good days with minimal SE's, able to keep cool or warm, wherever you are in the world and making lots of memories with smiles. -
Good morning ladies! Rainy day in Houston today! The power went out in my building and after 1.5 hours they sent us home to work. So walked down 12 flights of stairs and now home. I think my legs will be sore tomorrow!
Cocker, I think I will start Rads in 2 weeks, I live about 30 mins from the hospital so will just be driving back and forth daily. At least they have free parking!
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Lory48---I'd be an emotional mess, too. That really does make you wonder about the doc. You'll have to be your own strong advocate. Best wishes to you as you face this new challange.
My frustration today is nothing like our f'n BC, but I was just setting up to make more peach jam, and lo and behold, 10 pounds of sugar infested with ants! I live a half-hour from a grocery store and it's hot outside. Guess I'll just shove those peaches back in the fridge. I've got to collect myself before I figure out what to do.
Speaking of heat, it was 101 in Yosemite yesterday. Plan your trip to my paradise accordingly. I think I just might pack up and go see Annie and her ol feller. Cold sounds good right now. By the way, we can see several families of "teenage" quail. So fun to watch the babies grow.
For all of you who are new to this site, welcome. If I may say, we are an inspiring and helpful band of women. Hang in there while we reach out to you. Jan Now back to those peaches.
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Beccad,
Prochlorperazine suppositories! 25 mg. they will knock you out but they will also KO the nausea. I also took sublingual Zophran, it dissolves in the mouth so you don't have to worry about throwing it up. Teaspoons of H2O. Once you are at dry heaves your stomach is so sensitive it can't take any more than tsps. So sorry you are going through this. Call your onco, too. As you know, those chemo nurses are amazing. Praying things improve quickly for you.
T -
Annie,
Nope - NO NAUSEA!!!!!!!!!!!!!
The biggest issue is keeping your skin from burning and drying out. I did very well, until 3 days before the end of my 6 weeks. My underarm was dark beet-red at that point, and broke in a couple spots. Ouch. They gave me a salve - Silvadene (sp?) which healed it within the week. Then the peeling started. It is like a sunburn. Just keep moisturizing! Wear something soft if you can, for comfort. I was home alone, so I shed the bra and form, and wore just a soft tank top. Of course, the other gal complained "Hey - I need a little support, you know!!!" Oh well, gravity rules, in the end. Once I healed and peeled, I had a baby bottom pink underarm. So far, I only have to shave half of that armpit - weird!
I was given Medline Remedy with Olivamine Skin Repair Cream by my nurses, both chemo and rads. It worked so well for me, that I have bought it for myself, now that I am post-active tx.
It's good that you are going to give your hands a break for those 6 weeks. I had hand problems during A/C - caused by ME. Someone plugged the toilet (who, me???!!!), and decided to be self-sufficient and go at it with the plunger. Stupid. All that pressure on my hands caused them to turn bright red and become very painful. Then they started peeling - not in flakes (like with rads), but in chunks, several skin layer chunks. It was so bad, that I couldn't open my Christmas presents, and in fact, had asked for a letter opener - it became my most cherished gift! I was given the Remedy cream by my chemo nurse, and I could see a huge difference overnight. I swear by it.
Moral of the story...moisturize well, keep a plunger handy, but also someone ELSE to work it, and when they suggest taking a stool softener for constipation - TAKE IT!!!!!!!!!!!!
But I digress... Nope, Annie - NO NAUSEA!!! The biggest problem you'll have is missing your old fella for those 6 weeks!
~ Shar ( 5.5 mos post-chemo/3.5 mos post-rads and active BC tx)
P.S. Changed my avatar, because I have my own crazy hair, now!!!
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Jan,
You must have Air conditioning. I don't, so I freeze my peaches etc. and make jam when it is cool outside. I read years ago, that freezing the fruit changes the cel structure and releases the fructose more efficiently so the jam is sweeter. I don't know if this is true but I like the way it sounds since it adds credence to my not wanting to heat up my house by cooking jam in the summer! Now, with chemo induced hot flashes, I don't want to cook anything! My poor family. Lol
Do you have any photos of those quail? Sounds wonderful.
T -
Spica, love your hair! Kinda jealous! How long did it take you to grow it? Mine is still military short, plus not much brows or lashes. Last chemo was May 7 th, so hopefully my hair will really kick in soon. The hair on my legs sure has;(
T
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