June 2012 Radiation Rads

Hildy910

Infobabe, 

I'm not mamabee, but also had a mastectomy and am getting rads. I think it's more common than it used to be; there are a couple studies I've run across that look at the benefits of rads for certain MX patients.  In my case, a combination of my being relatively young, plus having extensive LVI, plus having one node positive, caused them to recommend rads. I was in  the 'grey area', but as my RO said, it was dark grey.  

Infobabe

 Hildy910 

I  have wondered, if all the breast tissue was removed, what is left to radiate?  How could they even target that and not hit vital organs.

Cindyl

All of the breast tissue is never removed, and of course if the cancer is in a node...

mamabee

Hi infobabe - like Hildy my cancer had certain characteristics that made my docs recommend rads - non-inflammatory skin involvement, vascular invasion, and 2 positive nodes. I'm also relatively young (47). ALL of my doctors (surgeons, MO, RO) agreed I should have rads and I'm the type of person who would regret not having done all I could to fight the beast if it does come back. I had a UMX with a TE so they use a bolus to "fool" the radiation beam into concentrating on my skin - the TE also takes a lot of the radiation hit. 

Infobabe

Thanks mamabee

I was not questioning the possible need for it, I just couldn't understand how they could do it.

My heart goes out to you.  I feel certain you are going to beat this.

Hildy910

Infobabe, 

As far as I know, radiation on a mastectomy is no more dangerous than radiation on a lumpectomy. (It was certainly not mentioned when they went through the risks of rads.) I'll have to ask when I go in tomorrow.  

I also have a tissue expander in, which is fully filled, so it's the same size as my other breast.  They are, in essence, radiating the TE, the skin and any remaining pieces of breast tissue. If I understand it correctly, the radiation field is no nearer vital organs than it would be if they were radiating a real breast that had had a lumpectomy.  

Lagata1276

I feel extremely lucky to not have to have gone through chemo. You ladies are in my thoughts and prayers. Now I really don't know what I have to contribute to this group, but I sure am learning a lot.

Today was my 2nd treatment (in and out under 12 minutes) and I picked up my prescription cream. It is called Biafine and amongst other things is specifically for radiation dermatitis. It says use 2-3 times daily and not to stop treatment even for one day unless your doctor tells you otherwise. The tech told me today that she doesn't think I should have skin problems as I seem very involved and like the type of person who would use the lotions regularly. We'll see and I hope she is right.

Neeners815

Lagata - I feel the same way re: not having to have gone through chemo.  Talk about brutal.  And of course you can contribute to this thread!  How awesome that the tech doesn't think you'll have skin problems.  I got a slight rash the first day and haven't had anything more yet, but I've only had 7 zaps.

Infobabe

Hildy910 

I don't know what you mean about lumpectomy radiation unless you mean brachytherapy.

I was supposed to have Mammosite at the beginning and even had the balloon spacer in.  The position was too close to the skin surface and they had to take it out.  If I had had it, I would be long over this.  

It is appealing because it only takes a week and there is no danger to lung and heart.  That is what appealed to me most and I am sorry I couldn't go ahead with it. 

Denise-G

Infobabe, I, too am undergoing radiation after a Mastectomy.  Here is a study by Univ of Michigan (where I go for treatment) that shows that radiation is underused after Mastectomy.     I am being radiated under my arms where I had 14 lymph nodes removed, the entire breast area, and up to my neck where higher lymph nodes are located. 

http://www.sciencedaily.com/releases/2010/03/100329162929.htm 

Hildy910

Infobabe, by radiation on a lumpectomy I meant the standard protocol of  regular old ordinary radiation on a breast following a lumpectomy.  

Re: Chemo.  The idea of going through chemo didn't exactly make me want to break out into a lively dance step, but for me at least, the reality was not awful. You just live your regular life, pretty much, but you have an annoying part-time job that you look forward to quitting.  It varies very much by person, but side effects are managed so much better than they used to be. 

Believe777

Yesterday I went in to have my measurements checked for the radiation treatments. In about five minutes everyone was satisfied that the measurements were good and they offered to do the first treatment right then. My first thought was that I would wait until my regular appt set for today but then reconsidered and said ok. I used someone's suggestion to count the zaps with 1/1000's. I came up with 2 at 14/1000's and 3 at 13/1000's. When the tech came back he said my total time is 7 minutes. Today was my 2nd treatment and so far so good. I keep waiting for some side effects but nothing yet. I did buy and use the Aloe Vera Gel and Califlora. I also picked up some circle shaped gel cool packs at the dollar store. They are perfect, my breast feels hot. I will have to ask my husband to let me know if I glow in the dark.

Infobabe

Denise-G

That web address didn't work for me.

Are you going to U of M for rads?  In most cases, that is too far away for a daily trip for X number of weeks.  You live in Ohio?  Where ever in Ohio, it is still quite a distance.  I think you said you have already had a session or two.  I sure hope you are holding up OK.    Hope I do as well.

lmlola59

Morning all site has been very active past few days.

Lagata1276 I just saw the Biafine mentioned on another thread also going to check this out.Have been using what they gave me Aloe Vesta.I saw a different nurse than usual Tuesday and she said the straight Aloe we get at the store is to drying and has no moisturizer in it. After # 14 yesterday I notice the nipple is red,swollen and a bit sore.Will bring it up today and see if it may be time to move onto something else.

Beleive777 The circle shaped gel cool packs sound interesting,may look into them and may be just what I could use right now.

Had a second simulation yesterday for the boost and didn't get any more tats.I was worried as I saw posted on another thread this was the case.They just used a plastic sheet and drew the location and will use this as a map. 

Denise-G

Infobabe - go to U of M for everything except Rads.  Still going there once per week.   Doing Rads locally as too far to drive daily.   Wishing you well. 

mckenna

make sure you check with your RO before you use any cool packs.  my RO specifically said not to use heat or cold on the rad field.  i know every dr and facility is different, but it never hurts to ask.

congrats to all that have started.  one more day until your 2 day break!!

Lagata1276

I am going to ask today at my third treatment if they recommend mixing the Biafine with Aquaphor. Last night I did and it just felt yucky. If I can get away without it, I'd be happy. Biafine by itself feels very manageable. Like the idea of the circle gel packs too.



This BC shit is a lot of work, time, and money!! Besides all the medical bills, we have to buy special creams, camis, bras, etc. then we have more laundry to worry about, and if we change our diet, that food is more expensive... Sigh. At least I'm saving money by not buying alcohol, I cut way back on that. And I DON'T believe that's what "caused" my BC, my 3 aunts were not drinkers at all! Sorry, having a bad day. Day 12 of my period and the new script isnt helping.

Neeners815

You've cut out your drinking totally Lagata?  Wow, I haven't!  I am changing my eating, though.

Lagata1276

Neeners - no no... I said I cut way back! And that's just because I'm trying to lose weight before I start the Tamoxifen. My SIL introduced me to vanilla vodka and coke zero, so had a couple of those every day. I am getting back to exercising daily and eating right too, but the scale hasn't budged in a week. I have about 10 to lose, so it's the most difficult. Darn it.



Thanks Mckenna about reminding us to ask the doc before trying anything new. And I may ask about those pads too. Are they charging you for them? Ha ha.



Lmlola - you should ask for Biafine!! I really like it. Slightly waxy vs greasy like the Aquaphor and it specifically is for radiation therapy amongst other conditions. And my cool RO thinks its the best.

mckenna

lagata they are not charging me for the pads or aquafor

i am trying to loose weight before tam too.  the exercising is so hard for me because the boob does not like to be moved much

the day before i started rads i went to the winery and the last day i am going to a winery, a perfect way to book end the whole experience!! i will have to try the vanilla vodka and diet coke, good idea. i am generally not a big drinker so cutting back would actually take be to about nothing, and that would just be crazy talk.

NancyHB

My DH and I were big wine-o-philes - we have numerous wine trails around Michigan that we frequent, and never come home with less than a case of wine.  The night before I received my official diagnosis was our 11th wedding anniversary - and the last time I had a drink.  I stopped completely.  I miss it like crazy, but it was the one thing i could actually *do* that helped me feel like I had some control.  I'm going for another run in a few minutes, but man, I hate exercising.  And without the alcohol, the ice cream didn't add that many pounds during chemo. 

Neeners815

Lagata - I gained about 15 pounds through this whole thing and I didn't even have chemo!  I'll be starting tamoxifen once the rads is over, too.  

NancyHB - wow - gave it all up.  That's pretty amazing. 

NancyHB

Neeners - not sure if it's amazing, might be pretty crazy!  Goodness knows I might be better off if I drank once in a while (or all the time?)  I am hoping to keep from taxing my liver, giving it a chance to fight off any "nasties" that might try to take up residence there.  now, if I could only give up sugar as easily...

Believe777

NancyHB-if you find a way to give up sugar, please let me know ! I've been on arimidex for 30 days and having my 3rd Zap today. I've gained about one lb. My exercise routine for today is to walk the air conditioned mall!

I will ask about the cool packs and report back, it never occurred to me that they could be a no no.

Bonseye

I went for my 6th treatment today and it was a rough day.  I arrived very swollen and not so happy.  I had the TRAM to build this right side and it is getting ruined.  My right breast is so swollen and painful....still 22 more to go!!  I cried a lot today and really need a pain management doctor as I have rheumatoid arthritis and that doctor doesn't want me on immuno-suppressents due to the cancer.....I have to put my arm over my head--which now my arm kills me all day as I have small fractures in the clavicle from the RA....the pain managment doctor I saw in the hospital doesn't see patients outside the hospital--What good is that???  We had a plan and my plastic surgeon didn't agree....so much for that.  Now I can't see him....the other pain management doctor I use to see doesn't participate with my insurance.....ahhhhhhhh!!  My poor husband has heard me cry a few times today.  I don't want RT anymore and yet I know I have to......going to lube up with aquaphor and comfy clothes.....maybe cry when my son goes to soccer......I think I have hit my breaking point and don't want anymore.  Especially if I may need surgery at the end of rads again.  I think it is heightened that today is what would have been my friends birthday--she passed away from breast cancer in October.  SHe had pain and ignored it for years.....by the time it was found....it was too late.  My heart is heavy and my boob is in pain.......thanks for listening.......

Lagata1276

Bonseye - So sorry for the loss of your friend. Hugs to you for your bad day. Hang in there sweetie!



Nancy - good for you! I imagine it must be tough. I'm with Neeners, amazing. I really don't miss drinks every night, so I must not have been an alcoholic like I feared!!



Mckenna - have you tried a stationary bike? Might not jostle the boob as much. Love the bookends!

lmlola59

Oh the drinking is greatly missed. I was what I like to think of as a social drinker and now I have one maybe 2 on the weekend (or nothing at all) and it is not easy.Have thus far been keeping away from any drinking buddies  as they will not understand since they don't all know about the BC and try to coax me into drinking and even at 53 I easily succumb to peer pressure.In fact my 24 yr old son wants to make a lamp from a wine bottle and has just asked me today to help him drink it tonight so he can use the bottle since is girlfriend has gone away to school for 2 months. Oh woe is me what to do, what to do.

Between the no alcohol,clean eating,exercising 6 x a week I have never been healthier ,Oh except BC. 

Neeners815

Bonseye - I am so sorry about the loss of your friend.  It's so sad.  And that on top of the pain and just all the crap that comes along with BC - no wonder you've been weepy all day.  Sometimes you just have to let it out; it's much healthier than trying to bury it IMHO.  I'm sending you big hugs and a glass of alcohol (hey, I didn't say I was stopping drinking!). 

Lagata - I might be the alcoholic you feared. LOL.  Just kidding.  Mostly  

Believe777

Bonseye, so sorry about your bad day and loss of your friend. I also lost a dear friend to Cancer but my good memories of her will last forever!

I asked three people at my appt today about my gel cool pads, the techs, a nurse and my RO. They all said they were fine. I hope, if your Doctors says ok that you have a Dollar Store near by. I purchased two, they are small circles and my hot breast melts them quickly so I keep switching off, breast, freezer, breast. My underarm arm was also very sore from the incision, in particular. I put the pad between my breast and underarm. It feels so good and my arm was much better today.

Believe777

Bonseye, so sorry about your bad day and loss of your friend. I also lost a dear friend to Cancer but my good memories of her will last forever!

I asked three people at my appt today about my gel cool pads, the techs, a nurse and my RO. They all said they were fine. I hope, if your Doctors says ok that you have a Dollar Store near by. I purchased two, they are small circles and my hot breast melts them quickly so I keep switching off, breast, freezer, breast. My underarm arm was also very sore from the incision, in particular. I put the pad between my breast and underarm. It feels so good and my arm was much better today.