February 2010 radiation starts anyone?

Going for #3 of 33 tomorrow-I'll be 1/11th of the way through-yay!

I woke up in the middle of the night on Friday feeling strangely "caffeinated". I felt as if I had had a cup of espresso before going to bed. I'm not sure if it's a side effect of the radiation, or maybe a delayed stress reaction to the new experience. Anyone else have this?

Mary

I think it is getting easier...that first one was long...my second was only 15 min. Not so bad..day 3 today...

Hi I was just wondering if I am making a wrong decision about having radiation treatments. I have a masectomy and double clear margins and no lymph node involvement. I did have IDC with 5 centimeter tumor in total. I have been reading all your posts and no one fits my criteria. Can you help me. Not sure if I am jumping to quickly into this radiation thing.

I went for my second rad treatment yesterday.  The rad onc, nurses and techs were so nice.  What a change from the chemo crew!  They even offered me a weekly massage and set me up with a PT for my cording (all of my other doctors said to ignore it and I have had it since Aug).   

Unfortunately, after my second treatment, I started to turn red.  The scar from my mx turned color too.  I got a rash on my back.  The rad onc suggested I continue with Xclair 3 times a day.  In addition to that, I am to put silverdene cream on my scar and cover my whole breast with a petroleum pad each night.  It is messy, but I don't want to burn to a crisp. 

Well, I'm down into the 20's now-29 treatments left! I'm a little pink but not too bad. I'm planning on wearing a bra as long as possible and no problems so far. I know it's early, but I'm hoping for the best. Planning for the worst, but hoping for the best!

Mary

Daysone- I had a BMX with axilla dissection and am doing RADS --BUT I had 12 of 18 lymph nodes positive.  However, I have heard that even though we had Mastectomies that there is no way of taking all of the breast tissue and that also cancer can return to scar line area.  (Ladies please correct me if I am wrong)... 

My margins were clear with my BMX -- however, I am still getting RADS to the chest wall area as well as axilla, supraclivicular and mediastinal areas. 

I also wanted everyone to know that there is a January RAD thread with great info. on it.  I am going back and forth from that thread to this one

Today will be 18 down and 15 more to go!!!

Loretta

"So this did make me wonder if there were women out there that had a masectomy with no lymph node involvement that were having radiation."

Yep....that would be me!  I have a very rare type of breast cancer - phyllodes tumor.  The conventional treatment plan says that Phyllodes does not respond to either chemo or radiation.  Guess what?  WRONG!  Mine did.  Phyllodes is so rare (400 diagnosed cases annually) that the last clinical trial was done in 1995!

I had a very large, quick growing tumor on my left side.  It was so large that whe I had the mastectomy, I lost 22 lbs.  There was no lymph node involvement because phyllodes doesn't normally metasize through the lymph nodes - it travels through blood vessels.  Even though the tumor was huge, my surgeon got completely clear margins.  Normally, treatment for phyllodes consists of mastectomy.  Period.  But because of the size of my tumor, my oncology team decided to involve a world-class expert on phyllodes in my treatment plan.  They presented my case to the Tumor Board, and even though most conventional wise said "That's it. No further treatment", my team decided to think outside the box and try both chemo and rads on me.  They gave me the option for both and I jumped at the chance.

 So now, because I have responded to both chemo and rads, I am now the "Guinea Pig" for phyllodes cases that follow me and the basis for a new clinical trial that my team is putting together.

My best advice to you is to do the rads and fight with everything you have.  Don't sacrifice long-term gains because of short-term discomfort.  Rads are very easy....hell...chemo is very easy compared to having to deal with a recurrence that might have been stopped!  If nothing else, you will have the peace of mind that comes with knowing that you did everything you can to fight this beast.

Go for it, girlfriend!

c2will - It must be so hard to wait.  All I can suggest is to enjoy your time and not let the nervousness get to you.  

When I get nervous, I try to distract myself with non-bc things like projects around the house, kids, cooking, exercise, relaxation breathing, anything really.   I would love to hear other people's suggestions on this.

Carol, I know how nervous you must feel, I too was freaking out...my first was about 40 minutes, but it was easy..then all the rest have been super fast and easy...I am in and out in about 12-15 minutes.   If I get there early they often get me in and out quick.  Once you get past the first two it is a piece of cake.

6 down...19 to go.

13 out of 35! One third of the way! Yippee! Went in early because of snow storm and they took me right in. We got back home before the roads were awful. I'm not sure if we will make it tomorrow, but I'll have a long weekend to heal. Not too many side effects just some tanning and a little pain now and then. Been lathering on the Aquaphor after treatments.

SoCal Dawn-

Were you able to find a brand of calendula lotion that has no fragrance or color? I thought I had found one, but when I took it in to show the nurse, she told me that natural fragrances-essential oils-were still fragrances-duh!

I have 5 visits down, 28 to go. My main problem seems to be some swelling in my breast, so that when I take my bra off at the end of my workday, there's a definite line where my bra was. It doesn't hurt...I'm also slightly pink, and feel a bit PMS-ish, but nothing too bad.

I had an allergic reaction to the Xclair cream that was prescribed for me, so I was told not to use it.

Instead, I am to continue with silvadene cream on my mx (diep) scar at night covering the whole breast with a petroleum patch at night.  I am to wash all of it off for my morning treatment.  On Monday, they are to give me a new prescription for cream that is to be applied after each rad treatment.  The rad onc says she is "very concerned" about my scar.  I had major blistering after surgery and now I have a one inch wide and 5 inch long scar on my diep breast.  My scar has turned a deep red after only 4 treatments.  Ug.

4 down 24 to go 

YramAL et al,

I am using a Calendula cream I found at Whole Foods. I will get back to you with the name. I don't detect a scent so I will check it out. It is strange to have such a disparity of opinions amongst the radiation oncologists. Mine is certainly insistent upon certain cremes (nothing drying) and nothing applied up to 4 hours before treatment and washing with only unscented dove soap if I have to use soap at all on the areas being treated. They advocate patting dry gently. They overwhelmingly recommend the Emu Oil so I suspect it has similar moisturizing qualities as the Vit E Oil. As for Aquaphor, well it is petroleum jelly which is oil in a different form but I would imagine at a certain point if the skin is starting to break down, this particular form is the most protective of the skin. I have heard lots speak highly of the domebro soaks  as well.

The swelling/edema is the most uncomfortable thing for me but still bearable. Dr suggested ibuprofen which made a difference in my comfort.

Re: Emu Oil - I think there are many distributors and I haven't looked up the one my onc has referred but here's a site that has some good info. It appears that the benefits touted are a moisturizer with anti-inflamatory properties that is non-greasy...for what it's worth...

I am 9 down as of today...starting to get a little itchy tonight as I wasn't able to stop and "re-grease" mid-day today like usual.

Have a wonderful weekend, ladies! 

I just finished #15 of 21 yesterday.  Getting there!!  I'm not complaining but I haven't really had any changes to my skin at all yet.  I hope they are doing it right!  lol!   Hang in there ladies!