Chinablue

I had planned on fiirst appt of the day too, my thoughts were take son to school, drive 1hour 15 mins to appt drive back and do work in afternoon. but found it too stressful, so switched to afternoon appts, gave me a chance to work while not tired and like Cgirl said I would just come home and relax as much as a woman can. lol

Good luck take care of you

xo Michelle

Chinablue - I started out with morning appts.  and then went to work because that was all they had open (not a morning person).  When they had an afternoon appt open up I took it.  It has really worked out great, because the further into radiation you get you do start to burn and occassionally get some side effects like itching, etc.  The doctors like for you to go home and "air" your breast out and wear loose clothing or no clothing and lie under a fan (that's what mine told me to do).  I found that on the occassion when my rads office has closed early during the holidays and I had to go in early (before work) it was hard to wear clothing on a freshly radiated breast all day.  Hope that helps.

Karenanne - my side effects leveled out.  As one thing happened the other areas have started clearing up.  Example... my underarm burned and turned black, it started drying up and dry peeling, then the underneath side of my breast started burning and dry peeling, that started healing and I developed an open sore the size of a nickel on the upper under side of my breast and it is now in the process of healing since my boosts have started the last 2 days.  Now my nipple is a little red and my under arm is almost completely well.!!!! Yeah!!!!   I hope you do not have the side effects that I have had.  I live in a small town with only one local hospital and we have a treatment center it is nice but I'm sure we do not have state of the art equipment from the research I have done.  It is rather antiquated.  LOL!  Those of you that live in areas that can go to the big nice Cancer Centers I think are much more fortunate with your treatment equipment... it helps to decrease the side effects you may experience.

As for me I'm healing up and having some decrease in pain and thank you Lord... I only have 3, count them 3 more to GO!!!!!!!!

Renee

Happy Saturday morning to everyone.

kmf, welcome. I can't tell you if your symptoms will plateau, because I'm about the same place in my treatments that you are: I have 8 sessions (all boosts) to go. So far, things have progressed in a slow and irregular fashion for me. Some days I'm redder and in more pain than others, and maybe the next day I'll be less red and have no pain, but overall, my breast is getting slightly redder and more painful over time. After my last regular treatment yesterday, things were the worst they have been for me. However, the change was not large, and I am slightly better this morning. There has never been a sudden, large change for me.

You are so close to being done that I think there's a good chance that things will level off for you. And remember: you are almost done!

hhfheidi, you have only a couple of treatments left, is that right? I am so happy for you, and glad that you aren't having bad side-effects.

angelsabove, I'm sorry that you are red, itchy, and sore. But... you are nearing the finish line. Congrats on progressing to boosts.

Jules, you have my sympathy for your cousin's recurrence. She is lucky to have you supporting her, and you will both get through this. Hang in there.

somanywomen, I'm tickled to hear that you are healing up fast. Yay!

Cgirl, Michelle, and Renee, you make excellent points about the value of afternoon treatments. I am lucky enough to be retired, so usually I can go home and "go topless" after my treatments. However, on the days I've had to stay dressed for a long time after a treatment, I've been pretty uncomfortable. So, if I were working, I'd definitely prefer after-work treatments, unless my employer was willing to let me work topless

BonnieSF, thanks so much for the post-rads report. I'm delighted to hear that you are healing up so nicely and feeling so good. Wahoo!

Renee, how wonderful that you are feeling less pain now. And... only 3 to go!!! You can do it.

Lissette, it's super that you are doing so well. I hope that this weekend you can get the rest you need to chase away that tiredness. 

Me: Yesterday was a hard day for me. It was my last regular treatment, which was great, but my skin was hurting (burning) a lot before the treatment, and I had only gotten about 3 hours sleep, and that made it psychologically difficult for me. Then, after the treatment, the techs told me a little about the treatment plan for the boosts. Previously, the doctor had told me that she *might* be able to miss the nipple. Nope, not gonna miss it. When I asked her Monday if electron treatments burned the skin, she said that the lower levels didn't burn much, but that higher energy levels, like 12 and 15, did. My treatments will be at energy level 15. If I remember what the doctor said, I think this means that in addition to the extra burning of my nipple, my lung will get a larger dose. I won't know for sure until the doctor shows me the treatment plan details after my first boost next Monday. The doctor had said that she would look at all the treatment alternatives and pick the best one. If this is the best one, I don't think I want to see the others. 

After getting this news, I did my best to hold it together until I got to the dressing room, and then I burst into tears. I have tried so hard to be strong during this process, but I reached my breaking point yesterday. The way I feel today, if I had known all the facts before choosing my course of treatment, I think I'd have chosen mastectomy.

Sorry for the whining. I hope to feel better later today

adrienne

25 down, 8 boosts to go 

 Adrienne and somanywomen - Ditto on the statement you made below.  I am in total agreement with the both of you.  However, I would not be second guessing myself if I had it to do over.  I did that the first time, but not again.  Doctors do not tell the complete truth nor side effects of rads.  "Radiation kills cancer cells, but it kills your skin, your breast, your lungs, hurts your heart and kills your spirit!!" None of which ws truthfully told to any of us.   

"The way I feel today, if I had known all the facts before choosing my course of treatment, I think I'd have chosen mastectomy."

Adrienne - I totally understand your come apart after you found out about your nipple being in the field for your final 8 boosts.  Especially after it is already burned and hurting.  I did the same thing, I actually even thought about quitting, as if!  But I did think it!! And yes, I cried all the way home and even after I got home and I think I ranted on here about it.  I know the ladies that go through chemo have a hard time of it, I've been there done that myself.  But when I compare my personal experience with chemo to my experience with rads, the rads has been much worse, both physically painful and mentally.  That said, I don't want to offend anyone that has had chemo or is taking it, that is why I said my personal experience, because that is what it is... Mine.  And it has been terrible.  I know this, if there is anyway at all I never want to take this road again.  

{{{{Hugs Adrienne}}}}

Renee

I promise, this is my last post of the day!!!

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Mimi..here is what mine charged per day....Talk about the ridiculous state of our Healthcare System...

I was told rads would cost $41,700.00 and medicare pays 80% and that doesn't stop them from charging co-pays. They gave me a form to fill out for assistance on the 20% but still have received word. To me this is outrageous!

Good morning, all.

Somanywomen, thank you so much for your support during my low period this weekend: that really helped. Yeah, sometimes it does seem like we're in a no-win situation. On the other hand, at least we have choices. A few years ago, we would automatically have been given a radical mastectomy, with all the pain and debilitation that involves.

Renee, I can't tell you how much your kind note and big hug meant to me. I was feeling soooooooooo bad, and your words gave me just what I needed. Thank you, thank you, thank you.

How are you feeling now? Is your nipple holding up to the boosts? Are your peeling areas healing? I hope this is the case, and that you are in much less pain than you were before. I know that you have been through a lot, and it sucks. I am sending you big, but gentle ((((((((((HUGS)))))))))).

To all: it is indeed amazing how much all this costs. I wish I were rich so I could pay all your bills. 

Me: It's amazing how much my attitude is affected by pain and lack of sleep. Yesterday I had several pain-free hours and managed to get in a few 15-minute naps, and it was wonderful. I felt cheerful and able to think about the last few treatments without wanting to cry. I took an Oxycodone before bed last night, and was able to sleep for almost 6 hours.

I'm going to see if I can talk with my radiation oncologist before my treatment tomorrow instead of afterward. If I can get enough sleep tonight, and if I'm not in so much pain tomorrow, I might even be able to talk with her without crying  I want to see my treatment plan, particularly to see how much of a dose my lung will get, and I want to find out what makes this plan better than the alternative plans. I think that once I feel sure that this is the best plan, I'll be able to accept it, even if I don't like it. 

To all: I wish you comfort, healing, and serenity. 

adrienne

25 down, 8 boosts to go 

adrienne, sorry this crap is so painful, it's just all crap but we got to do it, not much choice!...Very good idea about asking to see plan of action...We are not stupid and can understand where and what areas and how much rads and why..I asked for a copy of my 30 days of treatment about midway through and when I called to ask if they had sent it out to me, they sent me a copy of a ridiculous generic printed off the web plan of action....I want a copy of my records showing from day one until day 30, the treatment for everyday and I had ask them to notate the day that they let a unreliable tech treat me (that was the day I had a fit (they admitted she did 2 rads on me wrong!) and they said it would be in my file)..Well I will demand a copy of my medical records when I see my rad doc on Feb. 12.....I believe it is required by law that if we ask for copy that they have to comply...

We should get something besides pain from them, after all they were trying to charge my Ins. company $2000. a day (not what my Ins. agreed to pay, but what they originally billed for) that would have been 30 X $2000 + $60,000...just for rads....absolutely insane....

Everyone, have a nice relaxing painfree Sunday...Even if you have to dope yourselves up!! LOL

Renee, when are these docs going to take some responsibility!!!...Of course it  is the rads causing your skin to break open, look at all the women on this site that have had the same reaction!!!..Maybe we should tell the docs to read this cite so they have a clue and start thinking, duhhhhhhh!!!...They are always so ready to blame it on something else, yeah right maybe it's an allergic reaction to water when you shower, or maybe it's caused by breathing air, or better yet maybe it's because you live in the U.S and we have doctors that because of thier ego won't admit that it could possibly be related to what they have done (burn the he_ _ out of your skin!)...Once they start admitting this, maybe just maybe, we might start getting a better answer on how they can help prevent this from happening to their future patients!!!!!...Where do we get one of those caring doctors that they make movies about!!!!!!...Get mad and make sure you let him know, that the treatment obviouslly caused your reaction...he may play stupid but we are not stupid!!!!!

Renee, I was so mad about your doc I forgot to say, yes I have a follow up Feb 12, about a month after finishing rads..Don't know after that about followups.....

Somanywomen, thank you for your commiseration.

After my first two treatments, my rad onc asked if I'd like to see my treatment plan, and she showed it to me on her computer. The part most interesting to me was x-ray (I think) images of my breast from different angles, with colored contour lines showing what percent of the daily dose each area was getting. I could see that a small part of my lung, for example, was getting a 20% dose. I'll be seeing a similar treatment plan tomorrow for the boosts.

Regarding the skin peeling, yeah, it's definitely caused by rads. After all, you never had this kind of peeling before rads!!! As I understand it (and I may be wrong), the radiation damages or kills off skin cells faster than our bodies can repair or replace them. If we're lucky, the damaged skin sticks around until new skin grows underneath it. If we're unlucky, or if there's an area where there's moisture or rubbing (skin against fabric, or even skin against skin) or other irritation (like the armpit and under the breast), the damaged skin falls off too early, leaving raw skin underneath. I imagine that areas that get more radiation than others are prone to peeling, too.

Renee, I'm sorry to hear that you are still having a very hard time -- ouch!  I wish I could make the pain go away. Thank goodness that some of the problem areas are starting to heal up. Good for you for lying under the fan. 

I've never been able to sleep well on my back, but now that's about the only position I *can* sleep in. I sleep with my breast uncovered, and my arm up over my head (usually wedged under the pillow to keep it warm) to let things cool down and to keep the armpit and under-breast area exposed to the air. 

Regarding follow-ups, my rad onc told me that she follows her patients for 5 years (I don't know how often), and one of the nurses who's going on maternity leave mentioned that she'd be back in time for my 6-week follow-up. That's all I know about follow-ups. 

Renee, you are almost done. I look forward to the time when we can all start forgetting some of what this was like. I'm hoping for selective amnesia, myself.

adrienne

25 down, 8 boosts to go 

Adrienne: So sorry you're having such trouble now. Good luck as you go through your boosts. The good news is that while they are focusing on the boost area, the other areas start to heal up.Good for you for getting the facts about about your treatment plan.

My rad onc was always kind of cagey about what might happen, including the lung.  I think they do this to keep the we patients from freaking out too much, but it feels so patronizing! He admitted my lung was in the field, but said that the volume was small compared to the entire lung volume, so it shouldn't be a problem.PS. My lung feels fine now, but there is a spot on my back that is a little sore. I think that is where the beam exited. It's not terrible though.

Renee:  Thank god you're almost done. You've had a tough time of it. Regarding followup: From the rad onc I'm getting none at all. Medical onc will followup 3 months after radiation ends. I'll see the surgeon at the end of Feb.

Lumpectomy vs. mastectomy:  My experience was different from yours, Renee and Somanywomen. The med onc recommended mastectomy after the first lumptectomy and the rad onc after the second. Only the surgeon was in favor of radiation. I think that because I had to kind of fight for radiation it gave me strength to see it through. Also I've been healilng well so that helps a lot! 

Chinablue: I chose morning treatments because I figured it would be less disruptive to my workday. It has worked out well. If I did not have to drive, I would have preferred the afternoon, so I could just go home afterwards. I DID go braless to work for weeks! Kept wearing the same couple of loose sweaters over layers of very soft tshirts. Not too comfortable even so.

Bonnie

BonnieSF, thank you for the information and the good wishes. Yeah, doctors do seem to think that the less we know, the happier we'll be

I'm sorry that your back is still hurting you. I'm hoping it will soon be back to normal. (((Hugs)))

Renee, what a blow to find out that you have yet one more treatment to do. That must be really hard to take. I'm sooooooo sorry to hear that your nipple and areola are breaking down. Ouch, ouch, ouch. (((Hugs)))

But... you will be done with all this by Thursday. I hope you can do something to celebrate.

Me: After taking an Oxycodone at bedtime, I was able to sleep until 1:00 a.m. until the burning woke me up. I got up for a while, took some ibuprofen, and was able to sleep in my comfortable chair for a while.

When the oncology office opened this morning, I called and arranged to have my meeting with the doctor before, rather than after, my boost simulation and treatment. While I'm not happy that my nipple is in the field, I'm relieved to learn that my lung is getting such a small dose that it won't cause any scarring. I now have new black lines on my breast, but it looks like they'll have washed off by tomorrow. The techs put 3 clear stickers on me, and the parts of the lines under the stickers hopefully won't wash off. If they do, the techs said that they can draw them again.

To all: we're making progress. Not much of a pep talk, but it's all I can manage today

adrienne

26 down, 7 boosts to go 

Hiya, Congrats to those who are finished. Those having side effects I hope you will feel better soon..I saw some people moved over to Jan rads posts.

Ive been sick for days again. It seems Im always sick lately. Now I have broncitis and a sinus infection and am on antibiotics.

Mimi, In answer to your question on if we have to see the rads docs when done. Mine said I have to see my rads oncologist for years to come. I go next week already, then every few months, then it will get further apart. Have to see my surgeon too after my next mammo in August. (Frankly why must I see the surgeon again? Me thinks its a money making scheme).

Somanywomen I saw I was wrong on the plastic. Thanks for clearing it up. From what I read, it seems no plastic is safe.

Well Im off to bed. Im wiped out from being sick. Havent slept well.

Take care everyone

((Hugs))

Jules

Well.....I am going to #30 today.....I HAVE TWO MORE AFTER THIS ONE.......