Radiation recovery
Comments
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macatacmv, hoping you are doing better each day. Pain is a horrible thing! I just want to start rads so I can be done with them! Then on to either Tamox or Aromasin. My MO wants to start me on Tamox first to see how I do even though I am post meno. She said that the side effects from Tamox are less and people seem to do better on it but the risks are greater. If I decide against tamox, she will put me on Aromasin she said.
Welcome Brookside! YAY on having 10 sessions under your belt. I can't wait until I can say that. I have to have a re-excision on Monday due to a close margin <1mm so I can't begin yet. Probably mid April for me they say.
In other news, my insurance declined to pay for BRCA testing. I am going to appeal this as my Dad's side has ovarian which is linked and my BS thinks I should be tested! CIGNA is saying not enough there to warrant it. I am not happy. I am doing this for my children, not for me. I need to know if they are carriers and they have a 50% chance if I am carrying the gene! Ugh..stupid insurance!!
Have a great day and don't hurt yourself shoveling if you live on the snow line. This is heavy snow and very wet! We have a two hour delay for work as we have about 6 inches and it is still coming down at a good clip. Not looking forward to this drive at all!
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Janis - you are right. Chronic pain is awful. I live with it everday of my life. Some days I hurt a bit and some days I hurt a lot. That does sound like fibromyalgia..... which I have. Neck and shoulders are the worst and sometimes that place behind my knees. OMG. Get it checked out soon if you can.
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I have tried 10 times but can not get the avatar to add my picture.
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Bunkie, I think you need to upload the picture to Facebook or snapfish or shutterfly or something like that. Then you load it from there. Good luck. I'm anxious to see what you've chosen to use..
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SAB, so sorry to hear you did not get that job. And what a bummer to have that nasty weather just when you are feeling down...I hope better days are ahead.
To those of you who are going through rads or about to start, I wish you the best possible experience.
I had the red rash - it got so itchy that I was always rubbing, touching, scratching....then RO gave me a steroid topical cream and it helped so much. I kept thinking it was a fungus like ringworm but I was wrong. It cleared up right after the last treatment. But it was quite uncomfortable.
Happy week end....it's early St. Patrick's day in my town this week end...but I am avoiding the parade festivities because my DDs and grandkids will not be here...too sad for me to go without them!
It's my anniversary tomorrow so we will go out for a nice quiet dinner.
Hugs to all,Joan
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MostlySew - I will try again. I have my picture on FB and several other sites. I wish I knew more about computers. I will ask my neighbor if it continues.
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I am just now realizing whAt an emotional journey radiation is staring to be for me.I have had 3 treatments so far and each day I find myself laying there on the radiation table watching that machine radiate my Breast and thinking of it as the enemy.Wondering what else is it hitting besides my breast.When I'm breathing and my chest is moving up and down how can it hit the right target.Somebody please help me change my attitude.This is pretty stressful day in and day out.I need to hear how someone else has managed these feelings.
I tried to discuss this my DH last night and his comment was I'm not like you I don't think of the worst things that could happen to me I just do what the Dr tells me to.Well he didn't help me allot with that comment.I forgive him I know he was tired and he's right I do worry too much sometimes.On a good note I found out yesterday I'm BRACC negative!!!!0 -
I visualized the cancer cells being zapped, and tuned in to the different noises. The machine is the enemy but only for your cancer cells, most people recover from radiation damage within 2 years (and I write as someone with rads damage) .In the initial mapping you are also breathing so this is factored in to the calculations for where the beams go...!!
Find any kind of image you like that works for you
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Josie, I have the same concerns as you and I haven't even started rads yet. Since it is my interior left breast, I am extremely worried about my heart. I am sending my path slides to a second pathologist who was one of the people that developed the VNPI scale to see if I even need radiation and tamoxifen which is the trmt being recommended. Certain DCIS patients can forego the rads and/or the tamox, depending on several factors. That is how nervous I am about this. I am thinking that I might 'just' do the rads and skip the tamox no matter what Dr. Lagios says in terms of not needin rads (he is an expert pathologist in DCIS) because I am too afraid to do nothing at all, but we shall see. But, tamoxifen is a powerful drug with side effects that make me very nervous, as are aromatast inhibitors. For as early and as small a BC that I have been diagnosed with, I may skip the tiny percentage of protection it might give me for QOL. Or, I might try it briefly to see how I do with it. I am still very torn about that, much more so than rads!
Now I have to see if I need to pony up the money for his expert opinion (he takes care of getting everything from Yale where I had my surgery including getting the actual slides) or if insurance will pay for this. I hope that insurance covers it as it is 625 bucks including a 45 min phone call to explain his findings after I receive his written report in the mail.
I decided to do that for peace of mind for more than just deciding if I am receiving too much trmt. I want to make sure that what was found in my path report is indeed DCIS and nothing more. It is ALWAYS good to get a second opinion if you question anything. I am doing what is right for me. Many people go with what their docs say is needed and never look back. I am not one of those people in any area of my life. I always question the "why" on everything.
Please know that radiation (particularly on your right breast) is considered very safe and that RO know what they are doing. If I do it, I will not look back and know I am getting the best care and the right care available.
Lilly is right. View it as zapping ANY cells that may have escaped the surgeon's knife as that is what it is intended to do. Here is a HUG for you sweetie!
Edit: Congrats on BRCA negative. I have a fight on my hands on this too cause my insurance company denied to cover it even though I already went through the test. They will hold my sample for 60 days while I appeal that decision. My BS feels I should be tested as did the genetic counselor. That is not good enough for them
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April,it is a very personal decision about the Rads and tamoxifen.But if you have read some of the posts on here about some who have had Masectomy' s and They thought they only had Dcis and when the whole breast pathology they ended up finding some invasive cancer that wasn't detected before.So I feel like these Doc's are probably right to TX me as aggressively as they can to try to reduced my risk of getting Cancer again.I was never offered a Breast MRI and feel that that is a better way of being sure they Don't miss anything.I am a person that reads the side effects before taking any meds and hates to take meds in fact I'm not on any meds right now and plan to not be until they start me on Tamoxofin.But even though I do plan to do everything they tell me I could still get it again.Anything I can do to reduce my chances of getting it again I guess I will.They told me since I'm so young 43 it puts me higher at risk for getting s one kind of Cancer again.Thanks for the tips and encouragement.I know what you mean about insurance and bills.We live week to week and I shudder every time a new Medical bill comes my way.Thanks also to Lilly for the tips.
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Josie, I totally agree with you! The younger you are, the higher your risk. As I said above, EVEN if rads are not recommended as necessary for me by the second opinion, I am probably going to do it anyway although not 100% sure until I hear what is going on and my odds of recurrence. As for tamoxifen, I smoke (working on quitting!)and the blood clots worry me a lot. Even though I am post meno, my Onc likes to start everyone with tamoxifen and then switch over to an AI after 5 years or how ever many years they are tolerated. She is tops in her field and she told me that it was up to me whether I wanted to lower my chances of breast cancer in the other breast (that is where tamox is really important) or not. The tamox will only lower my odds of recurrence in my DCIS breast by 2% which may not be worth it. The rads on the other hand lower the recurrence rate by much more than that - from 15% to 5-6% which is substantial enough for me to consider them for sure! The tamox would put me at 3-4% so may not be worth it for me. If I was a lot younger, I would most likely benefit much more from it.
I also can opt for Aromasin in place of the tamox if I really am uncomfortable with taking nothing. This is all so overwhelming and I am exploring all of my options before making the decisions on tx. I know that Dr. Lagios is a highly respected pathologist and I want to know what he thinks.
Also, another look at my path slides by an expert to make SURE nothing was missed (IDC or something) is the really important reason I am having my slides and mammos/reports looked at again as well.
FWIW, I think you are absolutely doing the right thing. As I said, rads are still on the table for me even if Lagios says I don't need them. I will make that decision after hearing what he says and listening to my own doctors too.
Hugs and know that you can do this!
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Sounds like you have a great team of docs behind you!!Best of luck to you and I wish you the best.I will try to look at this Rads differently it's just so scary.Maybe I'll try to close my eyes and visualise something else.
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Josie123, april485, & Lily55
Sounds like we're all wrestling with the same questions&concerns.
Went to rad setup Fri & Wed will be simulation with rads commencing Thu. Glad to be moving forward, but laying on that board my mind started to race...this is serious laser tag. Started to deep breath but is it safe? Closed my eyes tired to relax focus on healing...need this to live.
Also wrestling with HT other than vitamins not into meds. Wondering about radical changes like an anti-estrogen diet, but I'm 95ER/PR+ so not sure if that would work or even take HT once a week....crazy, but quality of life is so important. I'm active outside kayaking sailing golf tennis weight training don't want to compromise on life.
1 step at a time focus now on rads. We can do this!
April positive thoughts for lx Monday ((hugs))0 -
OH Yeah I almost forgot good luck Monday April.I'll be praying for you.
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I am still active post rads - get more tired even a few months on but that may be hormone treatment build up in my system and I do find that being active does give me more energy...strangely! Exercise is one of the most important things we can do for ourselves
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Totally agree Lilly! As for being 95+%ER+, that is my number too RMlulu and 60%PR+ so that is a huge concern. I am definitely going to be trying to lower that by diet as well..sigh. No sugar, very little meat (only organic) and no white flour etc. Can't/Won't go totally vegan or vegitarian, but am happy to use meat more as a condiment (like in stir frys that are mostly vegetables) so my 2 inch thick occasional steak on the grill will be a distant memory..lol. I will live but I sure will miss my meatballs! HA!
I have recently lost over 80 pounds and have been doing some serious stress eating and gained back 7! Not happy with myself in that area. Trying to cut down on smoking and getting ready to quit and have had a few days where I only smoked one or two cigs.
I exercise daily by walking 3 miles each day and more on the weekends. I do it 7 days a week religiously and have for the last two years and I know that is a good thing. Was lifting free weights with hubby 2 x a week too to strengthen my core but the lumpy put that on the back burner. Just was getting ready to do it again when the news of my re-excision put the kabosh on that as I don't need a shoulder injury!
Ok gotta run. My bestie and her hubby are here for cards!
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josie - I was just like you. I kept calling it the microwave and I cried after each week. Sat was my break down day. I called it planned depression and going crazy. I already have a lung disease and just figured it would take out part of my lung or my heart. They finally took me in and showed me the radiation planning photos etc. It did not look like it was near my heart and it went across my lung bottom just a smidge. I did well overall regardless of the SEs they told me were not rads.
Just take it one day at a time. Rads is not as hard as chemo they tell me but emotionally it was awful.
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Hi all! I hope everyone is having a nice weekend. I have finished 13 days of rads and have 15 to go. I am pink but not sore. If the weather doesn't play interference, I should be finished by the end of the month. I see the MO on March 26th and will walk out with a prescription for one of the hormone pills. I dread this b/c Tamoxifen made me so tired when I was taking it before. But I have decided I will not fight this course of treatment because I would like to be around for awhile. The center I go to has decided that my pro activeness is okay with them but they are not use to it. The head nurse said patients just do whatever and they, the nurses assume all is well. She said it is a culture thing but I just said I can't just be like a sheep and follow whatever. I think it is my best interest to ask as many questions as I can and yes, I do have expectations of others to do like I would do. Oh well, I just keep asking....lol. My top part of my head is still bald but the sides look and feel like hair is growing. I hope that hair will start spiking on the top real soon. Anything out there besides biotin to get the hair growing?
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Spiney, you are nearing the half way mark - that's great! Glad you are feeling comfortable.
To those who are in rads or about to start, I said this before...
I was able to lie face down during rads on a board with cutout for the left breast. I felt much better doing this because of the left side. That is not an option for everyone...have to have large enough breasts to protrude through the hold in the board on the table. But it is something to ask about. The boosts were straight down from above, though...and that was unnerving.
Also, I was able to wear a tiny iPod which I clipped to my gown or under my hair. I only used one ear phone because I wanted to be sure I could hear any instructions. This was my saving grace during rads...listening to the music allowed me to focus away from what was happening and to go to 'my place' for the minutes of treatment. There is no reason not to be able to do this. My rads team had an iPod player but it was across the room...having my music in my ear was so much more personal and effective.
Best wishes to everyone.0 -
Like Joan, I too did my rads in the prone position and highly recommend it. Because of where my incision was, I had to lie on my side for the boosts, though.
I didn't have too much anxiety about the whole process, but for someone who does, I think the iPod idea is a good one.
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My son has a little I pod maybe I 'll bring that with me if I can find it.If say say no then I'll just close my eyes and try to relax.Thanks to everyone for the comments and suggestions.
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Has anyone had loss of appetite?All weekend I Just don't feel like eating.Is this from the Rads?Or is it just a coincidence?I have eaten but find myself really having to force myself to do it.
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Aha Josie! That solidifies rads for me...no appetite! LOL...just kidding. I have heard that it can cause loss of appetite for some. Soup always is easy to get down and nutritious so maybe try some of that?
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I lost appetite during rads and I think its common as it was one thing they asked me at every appointment with the Rads Doctor (once a week)
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I hope it improves.I am only 3 days into it.But my Rads is on the same side as my stomach.Interesting isn't it.
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Yes, I lost my appetite too - even lost a few pounds, but apparently not enough to be a concern for them. I actually viewed it as a benefit of the rads, LOL, as it got me that much closer to goal weight.
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I was a little queasy in the beginning, so that affected my appetite. Turned out I wasn't drinking enough water, so the dehydration was causing mild nausea.
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I, too, remember not really being too interested in food.
I think it was the stress and the traveling each day. After treatment, I'd sometimes stop and get something to eat and binge away...after rads, I cleaned my car and found little crumbs of cookies and sprinkles
The cancer center had the best coffee area and I'd put a package of cocoa in a large cup with coffee and creamer. That would hold me for hours. I guess I rewarded myself with comfort food.I had extreme anxiety about having to lie still and being left alone in the room with the monster machine. Before I went in, I used Rescue Remedy drops, put wintergreen-eucalyptus gel under my nose, put Listerine strips in my mouth, gulp water, and turn on my iPod. I must have smelled like a pharmacy. I'd play word games in my head and it all worked. I can't imagine what the tech team thought. Then I'd talk to women (non-BC patients) who had the tight mesh rads mask over the face which got snapped down to the table, and I'd feel so foolish. [If I had to do the mask, I'd need sedation.]
Annette, it sounds like you just finished - congrats. Josie, sending positive thoughts to you - it will go fast.
Nite all,Joan
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Welcome to the new ladies here. Sorry you have to join us, glad to have you. Spiney, I was also told that Tamoxifen is given concurrently in other countries, and so I did choose to start it as I wrapped up rads. My nurse said that they generally give one treatment at a time because it makes it easier to pinpoint the source of SEs, and I guess that makes sense, but if you are tolerating rads then why not start your hormonal? Sooner you start, sooner you finish...
MO appointment on Wednesday. I did the bloodwork today--it's time to check markers. Think good thoughts. In between now and then I have appts. with my DD's school. She has decided to experiment with being rotten. Grrrr.
I tried to skim all the posts but can't quite keep up right now so I will send out a hug and a hello and hope everyone is doing OK.
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Just stopping by for a quick hello. I was reading the current posts and really had to chuckle about the loss of appetite. If only. Sigh. Nothing has ever kept me from craving food. Nothing. I probably gained weight during rads from all my baking. It made me so happy to bake and share, but I had to test first of course. I do love food.
Feeling really good, we took the boyz for two walks today and spent a lot of time working out in the yard. Spring fever is definitely here. It was 63 here today but felt absolutely perfect. Great day to be outdoors.
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