September 2010 Rads

swiftbird

Add me to the list.  I start on Sept 7th for 6 weeks.  Oh. Joy. 

JanetfromPgh

Add me to the list.  I go for my CT scan on Thursday and he said the dry run next Friday with the real deal the following Monday.  I've never had a CT scan before so curious what it is like?  I couldn't do the MRI without meds.  Do I need this for the CT scan?  How come there is such a difference in the amount of radiation that everyone is receiving?  My doc says that I will get 35 sessions.  I just can't wait for this to be over!!!

dutchgirl6

Hi there, and welcome to the new members.  We're getting to be quite a group.

Maranatha, thanks for all the great tips.  It does help to have someone who has been through it already contributing to the discussion.

Bubbalu, it sounds like things are still unsettled for you, I hope that they get it all figured out and you can get started soon.

Swiftbird, we are starting on the same day.  I can't believe it's only a week away!

Janet, my CT scan was over in less than five minutes, not like the MRI, which lasted half an hour.  Also, I was face up, not face down, so it felt somewhat normal.  I didn't have any problems, but if you are concerned, you should probably talk to the rad techs, they can probably suggest some coping strategies.  There are different protocols for radiation.  It depends on the hospital where you are getting treatment, what your rad onc prefers to do, and even where you live.  I asked my rad onc about it, I was concerned that 16 treatments wouldn't be enough, and he told me that the actual amount of radiation I will receive is roughly the same as someone like you, who will be getting more sessions.  I believe that the16 treatment is called the Canadian Protocol. 

dutchgirl6

Hi PaulaLV, sorry I missed you in my last post.  I was not given a choice as to which treatment plan to go with. From what I understand, at the cancer centre here, 16 treatments is the standard of care.

dutchgirl6

Hi PaulaLV, sorry I missed you in my last post.  I was not given a choice as to which treatment plan to go with. From what I understand, at the cancer centre here, 16 treatments is the standard of care.

Malady

A Poem I just wrote:OH LORD I AM GUILTY DON'T LET ME DO THAT AGAIN

Remember the day, when you faced the judge

to be found guilty of harboring a lump not to budge

and were guilty of all the things that it brings

and wait for an ultrasound, biopsy and things

You wait, read and cry and ask all the questions,

but removal is ordered with no suggestions

They find out about your accomplices and things

like positive, negative and all that it brings

You wait and you wonder will I be lucky and get off

or be sentenced to death, nothing to scoff

Chemo, Radiation and Tamoxifin become your new friends

and they make you wonder, is this where it ends?

You wait forever for some news to converse

and convince yourself it could have been worse

You don't need anymore kind of pain,

Oh Lord I am guilty don't let me do that again.

julia2

Hi Ladies,

Would love to join this group, rads start Sept 8, 16 tx plus 5 boosts.  My May 2010 Chemo peeps have been a godsend for getting through chemo, hopefully we can provide each other the same support through rads.  Looking forward to getting to know you guys, 

Julia

CELinVA

I guess there's no way out of it now.  I just had my CT simulation for radiation this morning.  I guess I go back in 10-14 days for test-run and then start a day or two after that, so it looks like the week of September 13.  The CT simulation didn't take very long and was painless except tiny pin prick for two tattoos.  I will have 33 total; and if it's timed right, I may finish on my 44th birthday.

maranatha

Don't know if this will help anyone or not but thought I would come back on and tell you a little about what radiation was for me.  I would arrive a few minutes early and go to a dressing room and remove my blouse and bra and put on a hospital gown.  Then back to the waiting area where I would sit.  They had a camera on the ceiling so they could see everyone who was there so you didn't have to check in with anyone.  In a short while a technician would come and get me and take me to the treatment room.  In there I would lay myself down on the table.  The table was very hard and the plastic thing they made you put your head into was very uncomfortable for me.  Often I would have them put a cloth in it so it didn't hurt so much.  Hard to lay still when your head hurts.  And you must lay very still.  They raise your arms over your head and place them in some slots to keep them there.  They put a rubber band around my feet so I would not move them.  They gave me a warm blanket if I wanted one and I accepted that several times.  Felt nice.  You can breathe normally but you must otherwise stay very still so you don't move out of the place they have put you in.  They drug me back and forth alot to get me in just the right position.  You will see laser lights.  They use those to position you.  I think the laser lights go onto your tatoos.  They want the radiation to go to just the right spot.  After I was all set the techs left the room.  They could still see me on a screen in their room and they could hear me so I could talk to them if I wanted to.  Then the radiation begins.  Doesn't take very long, five or ten minutes.  By the end I knew what the machine was going to do and knew when it passed over the top of me and to the left it was almost over.  Of course my nose itched sometimes and I had to cough but you just lay there and take it.  When radiation is done the techs come back into the room and tell you you can bring your arms down and they give you their arm to help you sit up.  You can then get off the table and leave......till next time.  All the techs, and sometimes there were four of them, were very kind.  You will be well taken care of.   But I told them I hope to never see them again!  Good luck on your radiation.  It will be easy, a picnic compared to chemo.  And I was told I had a 70 % chance of the cancer never returning if I did the radiation and I like those odds.

Alotte

Dutchgirl- Thank you for starting this forum and for your warm welcome! 

 Does anyone know what happens to a seroma when you have radiation. I've read that people who had 5 day internal radiation had problems because the radiation hardened the seroma. Does that happen with external as well? Should I try to get my seroma drained before radiation??? 

Anonymous

Hello again Bubbalu-we seem to be on the same schedule.

Maranatha-Thanks for all the great information about the radiation process.  Your detailed descriptions make is so less scary. 

worldwatcher

Alotte

I finished my five day radiation yesterday. I would certainly suggest you talk to the radiation oncologist about the seroma.  I don't know if you are doing the 33 treatment or the five-day.

The five-day treatment I had was with the Contura balloon, and went swimmingly along until the weekend after three days of treatment. Then I started having a LOT of pain in my breast and Monday and Tuesday were really hard to get through.

I kept asking why I was having so much pain but never got a good answer.  I thought it may have been due to the location of the catheter which was just under the fold of my breast and very close to my right armpit. I am right handed, so there had to be quite a lot of movement there. But the doc said yesterday that "Some women just have more pain than others." He also said that the knots that women are developing after a year or two (see some of the mammosite posts here) are scar tissue, and was trying to tell me how to massage my breast to avoid that, but I was too dopy to really listen, (thanks to Vicodin.)

I insisted they inject lidocaine yesterday to remove the appliance, and I'm glad I did because the Doc found that my breast had begun to heal up around it.

Other than the pain, I am glad I did it.  I am feeling good today except for a little weakness and that's probably due the stress of the past two days.

I think the trade off of the pain I DID have for a few days was worth not having to have 33 treatments, and there was very little exposure to my lung and I think none to my heart. My aftercare instructions include lubriderm and vit. E oil, but I think there was minimal skin exposure. BTW,  with my insurance, it saved me $1100 in co-pays to do the five-day treatment .

If you are well-informed going in, the five-day treatment can be a breeze. Be sure to check out the seroma situation though. They aspirated fluid from my cavity around the Contura balloon which was not possible with the old MammoSite one, I understand so that may be a plus for you depending on which appliance you are having.  Good luck.

SharonNM

Hello All!  Thanks for the new chat room.  I have my next appt with the radiation onc on Sept 7 and probably start radiation the following week - or at least the simulation.  Don't know what to expect.  I have a family member that had very few side effects and a friend that got very tired.  Friend recommended alo vera with NO perfumes.  I am planning on 6 weeks plus the boost.  My rad onc was open to doing the canadian method - which is shorter.  He said that studies showed there was no difference in cosmetic results (loss of breast volume) between canadian and american methods. I decided on american since I am taking classes anyway and can't really go on any trips.  Will be glad when this is all over -   

SharonNM

Marantha - I had a work colleague that actually had her jaw break after radiation because when the radiation was directed up toward her face - I guess (?) some of it got to her jaw and weakened it.  Do they put something over your face when the radiation is directed at your face?  Like the aprons they put over your when you get dental xrays?  Just curious. 

DMS

HI everyone.  So glad to find this group.  I had my simulation last Wed. and started radiation today for 6 plus weeks.  

bubbalu

Thanks to everyone for the well wishes with this burn/rash.  The rad onc today said it was/is a skin infection and had nothing to do with the radiation.  I had a chest rash before rads started and we got that cleared up with prednisone and cortisone creme then we started the rads.  After 4 days I developed this horrible burn on my neck/chest.  It's going away and he's giving me another 5 days for a break to start again Tues.  If it flares up again I may not be able to do the radiation and I really need it as I'm triple negative and it will reduce my reoccurence rate to 10% instead of 30% in the breast area.  He said he has 2 other patient with this kind of skin infection, both worse than me.  He claims it is not related to radiation and calibration and mapping are spot on.  I asked for antibiotics and he said I didn't need them it's clearing up.  Don't know where to turn next.  Any ideas?

maranatha

Sharon NM -  A jaw break?  How awful.  My radiation was never directed anywhere near my face so, no, I didn't have anything put over my face.  Someone mentioned having lead put over your ribs but they didn't do that either.  But my Rad Onc said they very carefully planned out the radiation so it did not go near your heart or lungs and I'm sure they are careful about other parts of us too.  so I don't know how your colleague got the jaw problem.  Just make sure you get your radiation from a very reputable place.  Make sure they know what they are doing and you have a good Rad Onc who plans out your treatment and tells the techs what to do. 

bubbalu

Here's a question for you  Have any of you experienced bad sunburns in your lives in the chest/neck area or have sun damaged skin there?  I have, I'm old enough to have been in the sun many years PRE sunscreens so burns and damages have occured in my upper chest and neck.  That's where this reaction happened that my rad onc calls a skin infection.  I'm wondering if the radiation txs are causing that area to 'heat up' and causing me these skin flares/burns/rashes.  It's not in the treatment area but after 4 txs it flared just like a bad sunburn from the past.  The rad onc doesn't seem to want to deal with it. Don't know how to protect that area from txs but if it reoccurs it will likely stop the rads for me.  I must do something to prevent that but what?

michigan

I'm joining the group as well.  I had my simulation yesterday and begin on Tuesday.  I'm looking forward to counting down the treatments

DMS

Thanks Maranatha for the update.  Just had second treatment today.  Can you give me some advice on what type of bra to wear?  All my bras have underwires and I understand that is not recommended.  

dutchgirl6

Hi all.  Welcome to all our new sisters. 

Julia2, I think that this is shaping up to be a great support group.  I love your avatar picture, what a lovely dog. 

SharonNM, I have been asking friends and family too, and the one thing that I have been warned about is fatigue.  I had a relatively easy time through chemo, and I am hoping for the same with rads.  I can't imagine what your friend went through with a broken jaw after her rads, I'm sure it was an unexpected outcome. 

DMS, I hope that you have sailed through your treatments so far.  When I had my surgery, I couldn't wear my underwire bras, so I bought a sports bra, which is actually the most comfortable one I have ever worn.  I went to the specialty store where I usually buy them, and told them what I was looking for, and as soon as I had this one on, I didn't want to take it off.  The brand is Anita, it is made of microfibre, so it is really light, but with great support.

Michigan, I'm with you, looking forward to counting down.  We are starting on the same day, so we can count together.    

JanetfromPgh

bubbalu, In the book, "Just Get me through this" the author says:  Radiation may give you the most trouble on the skin that has had the most sun damage already.  You might even witness a "recall reaction" that is, old burns coming back to haunt you."  She says that the skin will go back to "normal" after treatment.

dutchgirl6

Hi Janet, how did your CT scan go?  That was an interesting quote about old sunburns and radiation.  Now you have me wondering if I ever had a burn on the area that is going to be radiated.  I am also of the pre-sunscreen generation.  In fact, we used to use baby oil when we were at the beach to make sure that we got lots of colour. 

LisaSec

Hello Ladies! I just wanted to join in the group.  I go in tomorrow for my simulation and I am scheduled to start rads next week.  One step closer to putting all this behind me.  Thank you to those of you who are already in the process for the information on how to handle this part of our treatment.

bubbalu

JanetfromPgh: OMG, I'll have to get that book today.  Does it indicate how to protect that area of old sunburn through the tx?  It was so bad for 5 days, so painful I couldn't have anything fabric touch it or go out in this hot weather.  Finally after it spread a bit it started to disapate. I can't imagine having it come back the same or even worse.  How can he call that a skin infection????

I sure appreciate your quick response, I'm beside myself here.  Are you going to Magee for tx?  II had my surgery there Dr. Margurite BonaVentura.   have an apt there next Wed. for a second opinion with a rad onc Beriwell, a female. 

Dutchgirl6:  This is not in the radiated area, it's an area of old sunburn and sun damaged skin.  We will all get skin irritations/burns/rashes to some degree in the radiated area, that's a given.  This is an area that's NOT in the rad field. 

Love and prayers to all..................whatever you're dealing with today may it be lightened knowing that we are all in this together.  I too think of all of you when I'm getting my txs.

God Bless.....

shells43

Hi Dutchgirl6,

Count me in! I go in Set 8th to meet the Rad Onc. I guess I will start soon after that. Hoping for the Canadian protocol, but who knows. I just want to be done!

Hope everyone is having a great day!

Shelley

MelBell07

Hi All!

I'd like to add myself to the group. Had a bilateral mastectomy back in March, started chemo in Apr, and it just ended in Aug. I just started radiation this past week. I will be going in for a total of 35 treatments. It seems like so long I didn't think I would even need radiation to begin with, but after my path came back, they told me my margins weren't clear enough so...radiation it is!

I got 6 tattoos, and thought they were going to be more painful than it was. Does anyone else have tissue expanders in? I have to wait 6 months after radiation is completed to do my reconstructive surgery - which was a huge bummer to me. This whole process will take well over a year...but so far, chemo has been the worst.

They gave me Auaphor as well, and yes, it's very greasy. I use it at night and wear a crappy t-shirt to bed to not ruin any nice pj's. They had also given me some spray deodorant stuff, but I lost it. Any suggestions on other stuff to use? I still haven't got much hair on my head yet...but when it starts growing in, is it okay that the shampoo washes off on my chest when I'm in the shower?

Much love to all of you! Glad to have found this forum  

jsmiley60

Hi all! Glad to see there are so many of us out here! I'm feeling very apprehensive about the radiation. I start on 9/8 and will have 36 treatments. Ugh! Will this nightmare ever end??

MelBel: My doc told me to use Tom's of Maine deodorant. I had to go to health food store to get it.

shygal

Hi Ladies.  I had my first Rad session today and was told to only use Baby Shampoo during treatment (on my head since other shampoos can leave chemical residue on the skin).  I had been using Nioxin but will stop to "follow the rules". 

I must admit, I had myself in a bit of a tizzy worrying about the radiation since I had a bit of a freak out during my first MRI.  Well let me tell you....this was an absolute breeze compared to MRI.  Besides what has been described above by Marantha about the procedure, the machine made a slight buzzing sound when it was working.  I kept my eyes closed and the whole thing only took 3 minutes.  There really was no sensation at all.  I really had myself worked up for nothing.  My mental image was of the beam killing all those remaining cancer cells, just like a fire-fighter using a full-blast firehose!!

I was told only to wear a cotton (if possible) no-wire bra and like Dutchgirl6, I am in love with my sports bra that I had after my surgery.  

I was also told that my radiated skin will be susceptible to burning for the rest of my life and I should always wear SPF 40 and above on that breast.

So one down and 20 more to go....the whole thing took about 2 hours of my day, so really....not too bad with the remaining sessions taking a lot less time because I won't need another tutorial and will not need the x-ray that they did first today.

Dee2010

Hi everyone.  Short update.  I saw my BS, and he says it's normal swelling, nothing untoward.  I have another appt for CT/simulation on Sept 10, and then 25 rads sessions after that.  If the rad oncologist doesn't agree with the BS, they can duke it out (and they were having starting case meetings on Monday this week, so they must have discussed it).