Why are they radiating my collar bone and neck?

cherneski

Hello Ladies, While finishing up my sim yesterday I was told (when getting marked) that I am getting rads to my neck, and collar bone.  I asked why and was told because the have to radiate the nodes there, ummm ok.

So I asked did/do I have positive nodes there, or is this a precaution? 

Tech couldnt/wouldnt give me an answer.  I will be cornering the Dr. to get an answer, but I figure you gals are smarter than them and will give me a straight answer.

I had 7 positive nodes the biggest one measuring 2.5cm (I think it might have been 2.3).  

lassie11

I just finished radiation in that area. The explanation I got is that the nodes are a bit like a tree. While we had some out and some were positive at one point, this is going up the line to make sure that none of those little suckers escaped further along.  I see it is preventative, just in case care. The radiation doctor told me that studies he has read show that having that sort of radiation reduces chances of recurrance by another 20% or so. Seems like good sense to me. And believe me - I was reluctant.

Here's something I found out the hard way - don't wear a heavy bag with the strap on the side that was radiated. Until I did that a week  after radiation was done, my skin was good. Now I have burn like marks - should have known better - the radiation tech told me early on not to carry a purse on that side.

Bren-2007

Radiation is actually a prescription.  It is computed by a physics person in your radiology department according to what your rad onc has ordered.  I would definitely ask the rad onc to show you the script for radiation.  He can show you on his fancy computer the exact areas and how much radiation will be given to each area and WHY.  I pestered my rad onc relentlessly until he realized the only way to stop me was to sit down together at his computer and show me everything, including the weekly breast films the rad techs took. 

cherneski

Thank you both.  I am freaking out as usual.  I guess it is getting to be the norm for me.  First I was told they were most positive it had not reached my nodes, but of course couldnt tell till sx.  Then told stage llb, grade 2, then told stage llla and grade 3. 

Lassie, thanks for the tip about the purse.  I just bought a bigger one too~lol, I will carry on my left side.  And I really cant wait to go bra less for 5 weeks!

Bin, thanks for the tip that it is a prescription.  I will make the show me everything today.  I dont like feeling like I am not being told everything.

Bren-2007

Deborah .. I'll check back later today and see how things went for you.  Geez, my rad onc used to hide from me cause I asked so many questions.  But since it was a small oncology center, it was easy to find him!

I realized that my persistent questions might be miscontrued as my doubting his abilities.  One day I thanked him for doing such a fine job and told him I was basically just very curious about the entire process.  I explained that my son was getting his masters in physics and I found it all very fascinating.  wallahh!  After that he showed me everything on his special fancy computer and didn't hide from me anymore!!

Come to find out, I was the only "special" one who got to see all the stuff computer charts, graphs, films, etc.  I guess nobody else asked.  Weird, huh. 

Good luck .. hope you get your questions answered.

Bren

cs34

Hi Deb,

i was just jumping in to see some things about rads because i do my first one tomorrow and i'm just terrified. i'm kicking and screaming inside...kicking and screaming.

i am also getting my nodes done. i had to do simulation THREE times because my right TE was in the way. i had to be deflated twice and i am now flat and have an extremely odd shaped boob. but that's the least of my worries.

so, when do you start? it looks like we'll be close for starting at the same time so please keep me posted about your treatments.

i'm not sure if i have neuropathy, lymph edema or my arm are numb because of menopause but tomorrow i have to keep my arms over my head for 20 minutes and i can't even do it for three so i'm kind of flipping out. really scared i'm going to lose it while i'm in there laying on the table after walking through the door that has the big DANGER sign... UGH.

i asked if i can take a tranquilizer and they said yes. i needed to take them for the MRI's and it worked so i figured for this---i can take one too!!!!!

did they give you a cream to put on? i got a cream to put on.

i wonder if anyone ever went through this without any burns... i'm sorry but i just don't know how much more i can take. i really feel like i'm coming undone. my skin stinks SO bad...if the wind blows the wrong way i break out, i get hives on my neck when i'm REALLY stressed so i cannot imagine what this radiation is going to do.

and---i'm done the week OF Christmas. i hope i'm not too tired or in too bad of shape. in Jesus' hands...all i can do...

i'm flipping. i hope you're doing much better than me!!

Jayne_in_UK

Hi Deb, I was very interested to see this thread because I will be starting rads soon and I know that I will be having multiple fields hit also, including my collarbone area. So thanks for asking about this, and thanks to all the ladies who have replied.

I haven't had my sim yet, the cancer centre rang today and I now have an appointment for next Tuesday. I am not looking forward to this one bit, but I'll take any opportunity I can get to reduce my risk of recurrence. I think us stage 3 gals get the kitchen sink thrown at it.

Hope it goes well for you today Deb. I'll check back later if I can stay awake long enough  :-)  I'm still a bit tired from chemo.

cherneski

Bin, I spoke to the Dr. and asked him, he told me they are doing it as a precaution, that they were not sure if it had reached those nodes or not.  That answer was ok, for then, but not now. 

I do not want anymore things done to me that will give me life long side effects if it is not needed.  They can test for this cant they? Why dont they know?  Other women know. 

I started having SEs on the way home already!  I had such a hard time with chemo and kept telling myself "rads will be better, rads will be better". 

Well I called DH on the ride home told him what a breeze it was and I felt nothing.  Before I got home (I have an hour ride, and had to stop for D&D) I started feeling just the slightest bit of pain in my chest.  BUT that is not the kicker, the kicker is my heels are freaking starting to burn!  I have never heard of this before with anyone!  WTF WTF WTF!  Does anyone have their neuropathy flare up with rads?  I am already red.

I think that might be part of it too, is that I just dont feel like I know why this is going on.  I mean I know why but the Dr doesnt really explain things it is the techs and I dont like that.

CS, the actual radiation went very quick, maybe 5 minutes.  The rest was getting me in position.  They didnt give me any cream, they told me to use CLEAR aloe minimum of 3 times a day.  I am out of work and have decided to go bra less (boob less) for the next 5 weeks.  Heres to being done by Christmas!

Sheri, I am gonna post there, just not sure about tonight, I am beat.  But I yeah wondering about us.

Jayne, My dx date sister, I am tired of the kitchen sink!  I know you understand.  The sim, was just a pain in the butt, like what CS said.  And you can see above what rads is like so far.

I really dont want it done unless it has to be.  Yes the more precautions the better, but so is QOL.  They had to drop my Taxotere in half so my neuropathy didnt get any worse and stay as bad, well I dont want to live without being able to walk without extreme pain and this is just how the beginning of how that felt.  I will really talk to my Dr tomorrow and let him know my fears and I want a test done.  If it doesnt have to be done then right now I dont think I am gonna do it.  But I might change my mind by then.

I will let you all know.  Smooches

apple

oh dear Cherneski..

i've had rads in that area.. i've no side effects really, maybe a little pain in the my ribs..  i have hair.. real hair.. i think when you are in the 3 stage you can't mess around with options... and the one reason we are surviving is because of the fight we fight. 

my surgeon was not sure it had reached that node up there and indeed, even after chemo, rads and the whole bit, cancer lit up in the scan.

rads are totally different than chemo..  

kill the cancer, set up defenses.  charge

i strongly encourage you to not discount their possible effectiveness.

Bren-2007

Cherneski .. checking to see how things went today .. and if you were able to talk to your rad onc. 

Thinking about you,

Bren

KerryMac

Deb - I had Rads there too. 4 different fields. I had no positive nodes there either, but they zap them just to make sure no little cells are floating around.

I really had no SE's at all. I bet all of us Stage 3'ers got that whole area done. You are so close to being done with this Deb, you can keep going another few weeks. Really, just put your head down and keep going.

I know it seems as though you have been doing the Cancer thing forever, but it will be over with soon enough. It is kind of a one shot deal. Hit it hard while you can.

cherneski

I am calmer today.  I even calmed down enough to wait to ask the dr my questions until Monday. 

Head down, moving ahead.  Uggg

blondie45

Thanks for asking this Debi, it is much more reassuring to me also. I am actually happy that they are doing this entire area if it reduces are risk by another 20% possibly. I am going for # 18 of 33 today and it isn't going to bad. I am still just a little pink and it is a little stiff. I am getting noticeably more fatigued by I also have fibromyalgia so that has always made me more tired.

For those of you just getting ready to start I absolutely was more scared of rads than chemo, I just keep asking questions and get more okay with it the more I go along. Hang in there!