Overall satisfaction after radiation

June..it may be a little early for fatigue..but I remember them telling me that fatigue could hit at 2 weeks...just try to get your rest if you can...you are almost halfway there....hang in there!  You can do this!

I had TE at the time of my radiation, and did burn badly and had to stop for a week, I used silver salfadiasine to help clear it up. I also used vit-E oil and a vit-E cream 2x a day which I am still using 1 year later, my BS says my skin looks good and is soft. But having radiation also helped mess up my implants because your skin can still change for 18 or more. It shrank my skin helping it  to cause capsular contracture, and extrusion of the implants and my skin is still to tan. Am I sorry, well it is what is, and if it helps me stay healthy, then it was worth it.

ruthbru

I don't know if my rads could even have been done differently.  Being old and fairly large and saggy, maybe I should have looked for a place that could have done in on my belly, but I didn't know about that option at the time.  My left breast was right over my stomach, so the stomach got hit along with the rib and the lymphatics on that side.  It wouldn't have stopped the fat necrosis anyway.

I was zapped from 4 different angles, had 3 different shields in the machine.

I wish I had asked more questions - like how much benefit will rads give me.  I'm not convinced the side effects for the rest of my life are worth it.

June..I remember the nurse telling me that I would probably feel fatigue at half way through..I know that they have to tell you that but then..does one expect it to happen because you are told it will??????  Yes..sometimes I would feel fatigue but I think the answer to that is to get out and do something...walk..exercise..go to a sporting event or out to dinner or something...My dh was very good at getting me moving...and it seemed to help alot...the fatigue can hit you but if you fight it off you can feel good again in just a few minutes...and you are almost done!  WHEE!  

Congratulations, CTMOM!!!

leisaparis- I had BMX without reconstruction on 12/14/09.

RADS started 2/1/10 and completed 3/16/10!! 

Note:  I had a mediastinal lymph node positive (lymph node in middle of chest)...

I had RADS on the TOMO machine and they used a Bollus (kind of like a rubber material that they place on your chest to direct the rays closer to your skin to get a better skin reaction.  My Rad Oncologist said she was treating me like a skin cancer patient! 

I had radiation pretty much on all my rt. side from my neck down to lower rib cage and under my rt. arm where I had an axillary dissection. 

My experience was a week into RADS I developed a dry cough and would belch ALOT! 

My skin started showing some changes about 2 weeks into RADS.  The skin burns were the worse after RADS were completed and is almost back to normal 4 weeks post RADS.  Silvadene Creme was what I used for the burns.

Last week I was put on Prednisone due to the dry cough I developed from RADS.  I will be on Prednisone for 1 month. 

Seems like last Saturday I made a real turn around as far as my fatigue level:)  I have been doing chores in the house and finding myself feeling like I was before!!!  YEAH!!

In all that-- I am glad that I have done CHEMO, SURGERY and RADS and now on Tamoxifen to fight with all I can.  The HOPE that I have and the FAITH that I have in GOD has taken me thus far with a Peace of Mind and a different outlook on Life!  I'm Living My Life to the Fullest and Not going to let Doubt or Fear of recurrence Set In! 

WE ARE SURVIVORS!!

Loretta

My experience was not good.  I started Aug 20 2009 and I was 65 at the time and am now 66.  In addition I am a redhead with brown eyes but still very burnable.  At 13 days(not counting weekends) my nipple started hurting a lot and the underside skin opened oozing fluid.  I was given strong cortisone ointment that didn't help much and was very messy and had to be wiped off before each treatment.  At day 17(after a weekend) It was even more painful and I again saw a doctor and a social worker and cried a lot.  The doctor (woman) said "that doesn't look so bad" and lectured me about cancer possibly moving up the duct to the nipple and refused to use a protective device on the nipple.  By the 24th treatment I had so much pain that I refused to go to the last treatment.  After a day off I was a little better and went on with the 6 boosts.  I had a lot of small blisters that opened but healed ok.  I continued to feel absolutely "cooked" and after 6 months my nipple is still swollen and sore, my lumpectomy scar is hard and sore and the breast under the boost area is painful by the end of each day.  The boost area was a lot larger than the tumor bed and I would be very reluctant to have that again if I develop ca on the other side.  All the technicians I met were very nice and open to questions but the doctors showed very little compassion.  So, overall, I am not very satisfied.  I belong to Kaiser and the facility I went to is quite new with 4 machines. Treatments were about 15 seconds each from two directions.  Each boost was about 15 seconds.  In addition my tattoos are GREEN and I wasn't informed of that before they were done.  My dermatologist has agreed to laser them but it is considered a "cosmetic" procedure!!!  Oh, I also have some axillary and truncal lymphedema.  Thanks for reading my rant.

SoCalSue

I agree.  I would think long and hard about ANY radiation in the future.  I didn't burn, but I have a ruined rib.  There's no telling yet what they did to my stomach, but I have permanent low white count and had radiation sickness halfway through and was too sick to drive at the end.  I also got axillary cording and stiff lymphatics all up my side.

I refused tats and am happy about that!  They would have been large and purple.  Tech who does them has one on her hand to show how "small" they are, and they aren't small at all!  I consider them a slap in the face of women, like a concentration camp tat.  Demeaning.

I wish I had asked what the absolute benefit would be.  I still don't know.  I hope someone will post about that!

SoCal: May I educate myself here and ask what this axillary and truncal lymphdema is that you have.

I just want to watch for things concerning myself...

Sorry that you have had a bad experience with RADS.

Charmaine

I had a mast but need rads since I had 6 nodes involved (NOT micromets). Even though I didn't have bad skin issues I found the whole experience traumatizing. The going every day - it was IN YOUR FACE that you were being treated for CANCER. Also, the techs where I went treated me as if I were another piece of the equipment they worked with. Think of it - 25 treatments with the same team of 6 techs, and in all that time 1 tech asked me 1 time how I was feeling. If I didn't say "good morning" then they didn't even say that. The last day one of them said "Leah, did you know that today is your last treatment?" Um, yes, I went to first grade, I can count to 25. (no I didn't say that but was tempted). I expected some good wishes but all they said was "Don't forget to stop at the office to get the forms for you HMO to get reimbursed for travel expenses.". Gee thanks for caring.

One good thing is that the facility does not use tattoos; I was marked with iodine lines that were redone as they faded. Jewish religious law does not permit tattoos and the hospital is in Jerusalem with probably the highest percentsage of Orthodox Jewish patients in the world so they stopped using tattoos years ago - too many patients refusing.

So, was I "satisfied"? Well, medically I didn't feel I had much choice. That's about all.

I endured it. It's over.

Leah

Native, just wondering, do you is it actually better to get the 'old fashioned' axillary dissection?

Today was treatment 18 but no one will object to me commenting on something Leah_S said about ZapTechs.

In my humble opinion who does the Zapping makes SUCH an incrediable difference on how you feel about your treatment and I think even how you hold up under treatment.  When I went to my first treatment and met my team, I confess I felt a little nervous.  My lead guy is a really tall African American gentleman and the assistants were two women.  I felt a bit uncomfortable about baring my chest in front of this strange man every day even though I consider him like a doctor--I'm not a topless beach kind of babe.  But after 5 minutes everything changed.  He started by introducing himself and his team, asked if I needed a warm blanket, explained everything, asked if I wanted lights on or off, told me how long it would take, took LOTS of time making sure I was exactly in position, checked to make sure the nose clamp was comfortable, etc.  I felt so much better about everything and I know it sounds wierd but it was sort of like taking a few minutes to chat with someone you see every day, instead of an unpleasant reminder of breast cancer.  And every treatment with this man in charge has been the same.  I've watched him coming to get other patients and he is the same kind caring person with everyone.

But last week, he took vacation and had some professional stuff to deal with so another tech was in charge.  After my experience with her, now I get what people say about being treated like a piece of meat.  One of the assistants who works with my regular guy was there and she would say hello and how are you but once we were in the room, no one spoke to me at all. The person in charge never lowered herself to come get me in the waiting room and once I was in the treatment room, she either ignored me or talked down to me.  Not nearly as much time was taken with set-up---and I know it can't be that easy to get people in the right place.  When I said I thought it was my doctor day, first she argued with me and then, instead of taking my file to the ZapNurse, she stood around chatting with a colleague and complaining about stuff.  I almost missed my doctor appointment because he was leaving for lunch!

I found I didn't feel nearly as cheerful when I would leave after my session.  Yesterday, the regular guy was back.  As usual, he came out to get his own patients, asked about my kids, told me about his grandkids and girlfriend and their garden.  When I commented lying there with the stupid tube in my mouth that this was my halfway point and hump day, he laughed and said no that was yesterday.  I walked out feeling pretty darn good.  Whatever side effects are yet to come, I will come to the end of the experience knowing that someone cared about me and what they were doing and were doing their best.

It escapes me why someone who doesn't like people, who is self absorbed and non-empathetic, would bother going into a field where they will be dealing with emotionally vulnerable people on a day-in-day-out basis.

I was wondering if any of you are having or have had IMRT? How does the treatment itself differ from regular radiation?  I was under the impression that IMRT would take longer at each session to set up and deliver treatment. Did anyone have tanning under the treated breast about 2 inches down from where the breast starts?