Radiation with tissue expander

Thank you fo this input Carolyn - I need to hear it all to put my fears to rest.

I went to the Dr today and her exact words were "impossible" (about the throat feeling from Rads) and she was so dismissive, I hated it. She even said I probably have or am getting a virus. No way! I know the difference! 

I am so happy to have you all here, with the same symptoms, offering me support, I would be a basket case without it. Thank you!!

Hi Everyone! I am 66.666% of the way there. I had my 20th treatment yesterday. So far so good. Other than mild burn, I am doing well. I have noticed that the burn gets worse after the bolus treatments, then remains steady until the next bolus.

Kerkle, remind me next time to bring you a new tube of Aquaphor. My in-laws brought me two tubes when they came to visit. I've been using it sporadically in the evening before bed, and using Aveeno more regularly in the morning after showers. Also trying to avoid using soap near the burn so it doesn't dry out.

Looks like the average age of most of the women posting is YOUNG! I am 33. Maybe we'll be chatting for the next 50 years on this thread.

Hello everyone.  I just returned from Pennsylvania, where I had the opportunity to hook up with a bc sister.  It was truly awesome.  We were on the may/june rads tx and made the effort to talk to each other and realized we would be by each other  in PA.  We met, had dinner and I am so glad we made the effort. 

I realize what came out of that is what we texted each other as we said good bye:  We are fighters, we are happy we to have been able to be there for each other and we will meet each other again to provide support.  That is what this is all about: support!

Thank you , Estepp. My tissue expander is still tight and i think it goes in phases of tightness, loosen up and so forth. I have discovered the vitamin e works wonders!

My sister got a call Friday that they needed to reposition her for radiation. She already got her tattoos weeks ago and also that they wanted to remove some fluid.  She asked how much they said that would be decided by her radiologist and her PS.  She gets to her PS who told her that he had to deflate the left expander completely, she is very upset by this because she had no idea, she prepped for some but fully deflated.  In the PS notes it said the radiologist spoke with her and explained that she wanted it fully deflated and why but the radiologist NEVER spoke with my sister.  The PS was kind of put off that this would be in the notes when she did not speak with her at all.  She explained the convo she had with the person on the phone who was NOT the radiologist and she point blank asked about how much and was told she did not know as it would be told her by the PS.  

She wrote her radiologist an email, telling her a.) she was upset by the shock of this happening and b.) How could she write in notes that she spoke with her when she did not and wanted to see if it was possible in anyway to put back some liquid if at all possible as she starts her 6 weeks of radiation the 14^th.  The reasoning given by her radiologist is that usually she does not like to do radiation with tissue expander filled at all (which is not all the radiologist preferences where she is being treated) and the way she was lined up and her lungs being in the way she felt it was best, but MAYBE this Thursday when she gets remapped she will MAYBE see if she can add any fluid, but she does not like to change the plan once they have talked about it, but I read the note and I felt this woman was trying to appease her based on the fact she straight out lied in her notes to the PS.  She also reference how it was policy at this one entity but my sister is not getting her treatment there (they hospital has an affiliation with them but is not under their policy)  I work for this organization.  Also if it was policy why deflate just one?  According to her "policy" it was expanders in general.

Now my sister is fine having it deflated a bit and understands the lung aspect and wants to be safe, but she also does not want this bag jetting out of her skin.   I do not like the nerve of this woman lying and being so abrupt with her.  Had anyone had one side deflated and what precautions should she take in order to keep the skin good for an exchange?  Her PS said after she was done with radiation he would want to inflated it back until the exchange but has anyone else experienced this and should she possibly ask for a second opinion of another radiologist in the department?  Her PS is one of the best in this field, and her oncologist as well they have been great!  The fact that this person lied, and already has made my sister feel very apprehensive about this process bothers me as you want to feel like your treatment team is on YOUR team.  She fully wants to do what is best for treatment, but I think has lost faith in her radiologist a bit.  Any advice or feedback is appreciated.

She is inflated to a small C as of right now, not sure how much that is.  Is that 350 or 385 cc?  She has been fully inflated since about end of May I want to say?  So it has been a bit.  She expected to be deflated a bit because even her oncologist mentioned way back when he discussed her plan it is always a minor battle between Rads and PS's and they want them deflated to get out of the way of the beam, but she was not told how much. The PS also said, while it is not uncommon to be fully deflated it is not that common either; they usually leave some in and do tell the patient prior if they have to fully deflate.  She was more upset because she was not mentally prepared for it and then found out the Rad Onc said she had a conversation with her, which was false.  She took off next week to go on a mini vacation as it is the only time since January she has not had dr's appointments, fills, chemo, herceptin and the beginning of radiation.  Now she is sad and upset and said her vacation is ruined because she at least had her girls to get her through. Ha, I mean you have your days She was on an upswing, like hair is coming back nicely, just finished her chemo, doing great.  Like I said she knew she would most likely be deflated a bit, but having it all taken out crushed her and not being told about it and just having to go in and hear this news without warning, it was traumatic.  She knows it is all a means to an end but never easy.  She also came home to her Victoria Secret order..so not a good day for her.    

Yea she has been great about getting through all these little bumps in the road that has happened.  Just jeesh, you know you are looking forward to something and she just has this to bring her down..like I think if she had the week off first she would be like bring it on, but just bad timing.  I also think the actions of this woman have made her very upset.  She has had a great experience so far with her doctors.  Just the utter lack of communication on this doctors part.  I mean no one is prepared to hear you have cancer or the little suprises along the way but when you have the ability to cushion some of the bumps along the way, please do so.  Do not just spring it on the patient!  I mean nearly two month after having her initial mapping done (July 8th), that she would need to have her expanders deflated some?  They clearly had some time to mull al of this over and could have informed her sooner then when she showed up to get it fully deflated!  Just very frustrating more than anything.  Medically she will do what is needed...but a little mental prep is always nice.

Ladies, I added some pictures to the picture forum today. I was 5-6 weeks out of exchange.

Judy is right about the study...

MD Anderson.com

This is the protocol for with them. Get fully expanded.. then have rads...

BUT... Sloan Kettering's Protocol is Get the Te in there at mast.. and fill after rads...

So.. two top hospitals.. two different protocols....

Christi.. how are you doing? Go check out my pictures.. you can see how I am doing after rads.. I finished rads 4 1/2 months ago.

Christy.. I only wanted to be a C cup. I was filled to 420cc prior to rads... and 450cc Mentor smooth HP round. .. at exchange. This made me a small C Large B...

Most people think I am a small C to average C in a bra....

800 cc on a tiny gal seems like an F cup...LOL

Go over to EXCHANGE CITY and put a post there for Deborah ( whippetmom) she can tell you for sure! You have plenty of time.. so get all the info you can ..:) hugs!

I don't know why he wanted to fill me up so much....I didn't ask to be big...I would be happy with a C cup. I will get a regular implant in my other breast at the same time. I am 5' 9" and I just measured my rib cage (under my breast) and it is 30" 

Bras are hard to fit me because my expander is over to the side under my arm pit too much , but I am wearing a 38C, because it needs to stretch out over to under my arm pit. (I have to stuff the other side.)  I definitely don't want to be a D or DD!

Congratulations Josirus....It's gotta feel good!  Btw, my doctor told me to put vitamin e oil on the radiated side and my goodness, what a difference in the softness and smooth feeling of the skin.

I have had 7 treatments so far and just nopticed that my expander looks like it has 'dropped' or is 'drooping', either way you want to say it. Has this happened to anyone else?

DONE! DONE! DONE! DONE! DONE! [P.S. Did I mention I am DONE? ]

It feels strangely liberating. I liken it to walking into a final exam ill-prepared but walking out feeling like I aced the test. My hubby surprised me there with a bouquet of flowers and a cappucino. My two favorite things (other than him and my littler man who's 3).

On September 8, 2008, exactly one year ago today, I got the dreaded call from my breast surgeon with news that changed my life forever. And today, September 8, 2009, I got zapped for the last time and am done with treatment. I can literally say: 'What a year it's been!" Now I have my exchange to look forward to - in six months, but I am hoping I can talk my PS into earlier if my breast cooperates. I will let you all know when I've uploaded my photos onto the photo site.

We're celebrating tonight by ordering in food. My 5th and 6th favorite things: a meal I don't have to cook and Indian food.

Josirus: YAY!!!!!!!!!!!!!!!!!!

I am close behind.......thank you for all the comfort. I can't wait to celebrate with you.