Fall 2012 Rads girls......come on in!
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Ellendou... I was so short of breath on chemo...I could barely make it up our driveway and walking up 6 stairs used to feel as though I had run a marathon. I finished my chemo on June 22 and still am not at 100%. I know I've had surgery, but even so. Now waiting for rads to tire me out... oh! what a journey. Happy I have you guys to hang out with and go through it with.
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Tazzy - thanks, nice to know it is just not me, thought it was because I had gained weight and have not been walking like I use to, just finished Chemo on the 24th will keep working at it. Yes it is nice to have others to go through this with.
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Hi ladies, I recognize a lot of you here. I just had my second planning appointment today. They marked me all up and gave me five little black do tattoos. They hurt for just a second but that was nothing compared to everything else I have been through. The RO ws happy with how everything lined up. She said that she would be able to treat my infra mammary nodes without destroying too much of my lung. I guess I am supposed to be happy about that but I am not happy about any of this. I am ready though to just get this done and over with. I am at high risk of lymphedema too since I have 6 nodes out and am gettting my axilla radiated. I am already paranoid about it and keep imagining that I already have it. I have an appointment next week with a lymphedema specialist. Hopefully they will be able help with the cording that I am having trouble with too.
I was worried about the thyroid too when I saw how high on my neck they are marking. She said that they put a block over the thyroid. And that the radiation I am getting doesn't have any increased risk of thyroid cancer or hypothyroidism. But then she informed me that there is a correlation between breast ca and hypothyroidism. What else do we have to look forward to?
What a year. I have chopped of most of my breast. Gotten three more scars. Poisoned my blood and heart. Lost my hair. Killed off my ovaries and gone into chemopause. And now it's off to burn my skin and turn it into leather, and scar my lungs and thin my bones. All to kill cancer though right! Better freaking work. -
Hi jpmom... great last paragraph on your post... aint that just the truth eh?
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I'm not starting rads until December (Merry Christmas!). But I'll be lurking here to see what I can learn in advance. Good luck, September ladies!
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Hi Stride.... one piece of advice I have been given is to start moisturising your 'rad' area at least a month before rads start.... I am using Glaxal Base on the advice of another poster here.
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Hey Ladies,
Well once again I'm in this group. Will have my last chemotherapy on 9/14/12. I was not so bad, had some emotional days, meet some great people. Got to tell you thought having a needle poke in you on a weekly basis, succcccccccck! Side affect not so much, but chemo brain, Woooooooow. Will be starting be starting radiation probably the following week after chemo finishes, given I have schedule to start before chemo, mistake at doctor office. They tell me the first day is the longest. Having to go five days a week for six weeks, not looking forward given I am still working. My days will be very long.
Cancer sucks, but the people I have met on this journey rock! Will keep coming back always inspired by the post as well.
Good Luck, everyone talk to you soon.
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Hello Ladies. I have been reading and will now jump in as the treatment plan is in place. I am an eight year survivor of cancer in my right breast....and am now dealing with cancer in the left. This is not considered a spread of the original but rather a new primary. Had a lumpectomy and snb on August 30th.....got the results Friday that it is DCIS...no invasive cancer...clear margins...and no node involvement. Appointment for the tattoos on the 27th.
So this will be my second time with radiation. I am a large woman 44 DDD. I had some discomfort toward the end of radiation from my skin breaking down...but it was manageable.
Last time I had great luck with the Aleo...actually have already picked up....just make sure you get the Aleo that has no extras added.
Wishing us all the best. Patti -
Well hello! I was reading a lot on the Summer Rads thread, but I'm moving over here now as I'm scheduled to have my mapping/simulation on Sept 20th. I got my rads treatment plan before I had surgery, I'll be in it for the long haul of six and a half weeks. (I wasn't told the exact number, but I assume this means 33 treatments.)
I'm just over a week out from my surgery now, it will be three weeks exactly when I get my simulation. I've already stocked up on aloe gel and my regular lotion (both from First Aid Beauty), but haven't started using it yet. (I've still got the steri strips over my incision.)
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hey Cottontail... good to see you here.
Patti... I cant even imagine having to deal with a 2nd dx 8 years later.
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pattie3796...I know how you feel. This is my second diagnosis and 2nd round of rads in less than a year. I was dx'd with a new primary in the opposite breast 2 months after finishing rads. My skin broke down as well. It was mostly in the crease under the breast and in the armpit area. I'm a D cup. Did you mean Aloe? Is it the 100%? I was using udder cream and I liked it alot. I think the main reason I had the problem under my breast is because it's difficult to keep it dry, especially when sweating at work. I've had 3 of 28 tx's and so far so good. Last time they stopped it for a week after #23. Keeping my fingers crossed this time!
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I met with my RO last week and will be doing the simulation 9/21. I need to have another mammogram first on 9/18. I, too, am planning to pack up and move. I already commute 90 minutes into work, and the appointments will be another 75 minutes on the other side of work. So, I figured, I will live close the the RAD appointments.
I've been preparing the regime by alternating aloe vera gel and Jean's cream every morning and night. I read about Jean's cream a long time ago, don't remember where.
Also, because of the commute, my doctor allowed me the option for the Canadian protocol of 4 weeks; I am thrilled to try this. 9/21 seems so far away, I want to get this started and done!
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Hi Ladies, I've got insomnia so I' crusing through the boards to see what's new. I'm actually at the implant stage awaiting for revisions. But I skimmed through your posts. My chemo was completed late October 2010. The first week of Dec. I was trying to get the Christmas decorations up from the basement, and I was heaving. I would have to stop halfway up to sit on the stair and just breathe. My surgery BMX was the second week of Dec 2010 so I had a check up real quick with my MO for a last look before surgery. I talked about how much of a weinie I had been trying to decorate the house for Christmas. I explained how the stairs were exhausting me, a walk in the mall required rest breaks...freakin' weinie I tell you.
The MO & his nurse looked at each other and then proceed to tell me I was not a weinie. The effects of chemo remain in the body up to a YEAR after the treatment is done. So I was still fatigued from the chemo. I asked why they didn't warn us in chemo class before it started because I had been PUSHING myself and punishing myself for being such a "weinie". The nurse told me we are given SO much information at the beginning that our brains are exploding and some things have to be put off until later in the treatment. At the beginning wasn't the time yet to hear about how we'll feel afterward. But I have found a lot of women aren't told about the year delay in chemo getting out of our system.
In the same token our skin reacts to rads up to a year after tx. I had 33 beams. I'm not going to lie, it was hellacious. Some of you will have irritations and some of you will be like me. It was hard to get up day after day and let them burn me all over again. But by the time I was in your shoes, I almost felt numb. Chemo, and then the BMX with reconstruction was THE most painful surgery. I had horrid muscle spasms and I felt like they were treating me like a drug seeker because I wasn't responding to the pain meds the way they expected. So by the time I got to the rads...in Jan 2011 I was kind of buzzed and numb emotionally. Just do what you gotta do to get through this. It was rather surreal at times. I had 2 of the best RO and they were VERY liberal with the GOOD pain meds. They told me when it became apparent that I was going to be one of the unfortunate ones who get crispy fried, that I did not have to be brave or suffer. They would medicate me however much I needed to get through it. God bless them! Morphine was very good to me.I wore my husbands old white cotton tshirts because a bra was impossible, and my skin was too much of a mess for my clothing. At the end I was wearing telfa pad dressings with silvadene cream - that's GOOD stuff. Nasty and stains fabric but it kept all my open flesh from infection.
For those who will have external rads, let me warn you. Those sweet rad techs, are ruthless when it comes to positioning you. They will tape your arms in place if they have to. I found that they CAN get your right elbow to fit into your left ear. Someone said to massage your skin before rads, work on your range of motion as well. Because they WILL force your arm into position if you can't do it. I often had to have them pick up my arm and move it for me because it had hurt so badly it was just quivering from exhaustion.The good news is you will physically recover from rads a lot faster than you do from chemo or surgery. My skin was non existant by the final rad and what a joy that my 2 sisters showed up at my clinic in full mardi gras costume, balloons, noise makers and beads. They came to celebrate the end of radiation as they knew I needed to celebrate. They brought home videos to spend the day watching video of my son as a toddler - it was the BEST medicine! Plan on celebrating your last day. It's different for everyone. One person burns and the other doesn't. One only has a little skin issue and others have a lot. I know mammosite is a lot easier to get through, but you will still feel tired. But within 3 weeks I was feeling 75% better...peeling like a snake, but could wear my bras again and my energy was coming back. However just like chemo, rads affects the skin up to a year after it's over. At 10 months after rads I started feeling tight and despite ROM exercises, felt like the muscle was cramping up around the TE. I went to PT where she was a specialist in LE, and contracture. She massaged the heck out of my muscles, myofascial release and exercises released the adhesions and I was able to continue with my expansions to implant.
For women of faith, I will share my Radiation Scripture with you...Isaiah 43:2...When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. I hope I'm not scaring anyone. I am one who tried to fully educate myself beforehand, so I'm not taken by surprise. But cancer treatments continually take me by surprise. When the burns got really bad, I was reading my moms journal. She died right after my BMX of BC treatment complications. In her journal she wrote that Scripture helped her through HER radiation. She died before knowing I would have radiation too. It would have made her cry because she had a hard time too and kept telling me she didn't want me to do rads. sigh. But her scripture was a comfort to me. I also would read over Psalm 18: 1 - 19 and try to visualize that.
God bless you all. I don't mind answering questions at all, so if you want to pick my brain feel free to PM me. - Rosey -
Wow fragrantroses, thanks for Sharon four story and so sorry to hear about your mom. I am nervous about it and sure hope I don't have so much trouble but I guess time will tell. 7 weeks until being done for me. But we do have to do it to survive. No choice. I guess that makes it easier to get through in a way. There are some on other threads that are doing chemo by choice. They were borderline and seem to actually be suffering. More because they are not so sure that they had to do it, I know I have to do this to kill the rest of the cancer so I am.
I have my final planning appointment this afternoon. I expect I will be starting the real thing this week. I just want to get it started. So I can get it done. This really doesnt sound like fun but it also sounds like I have been through the worst already. -
Rad treatment 3 today, so far so good ( I know it's early) I've been using My Girls cream everyday on the radiated area; it was recomended on the radiation boards somewhere....I had to order it, but it's been wonderful. Doesn't stain clothes, not greasy, but leaves my skin soo soft! I have a large jar of aloe Vera standing by as well, ready to go.
Let's keep each other updated as we go; I have very sensitive skin usually, so I'm very interested to see how I handle it! -
And in honor of jpmom,........it better freakin' work!
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Yikes. Just got a call from RO. My cat scan shows my heartt located close to chest wall. So instead of doing rads at suburb location 5mins from work i have to go downtown to use breathing apparatus to make sure heart is avoided. Anyone heard of this? Nothing can go easy. But heart is worth a drive to other end of earth if needed. Geeeezzzz!!
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JPMOM, think ALL of breast cancer is like that. Once you know this is what's going on, then you decide to get on with it. I was impatient to start chemo, get the surgery done, get the radiation....let's just get on with it so I know where I'm at.
Reconstruction has taken way longer than the active treatment. I'm not good at patience.
One thing about finishing rads was the day after the last beam, I was like adrift. I asked my husband, "well NOW what do I do?" There's some security in knowing you are surrounded by medical staff looking after your cancer related health. Suddenly you are left to deal with alone. I have had more than one woman say that they felt insecure not seeing a doctor for month at that point. Like - who is going to make sure I'm okay? You do get over it though as you regain strength and endurance. -
Hey everyone! Here I am...the last stretch! Just finished my final Tax round on the 6th...not having a great experience as usual, going for my mapping on Wednesday and will start my 25x rad on October 1st. So looking forward to Nov. 6 my last day!!! Stocked up on the parabin free aloe, and Johnson Baby Powder with corn starch...supposed to work wonders! Good luck everyone! Look forward to your posts and posting
xo Blessings
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Rosey, that sounds awful. Are you very fair skinned?
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Starting rads tomorrow. 9/11. Seems appropriate. I will hopefully finish 10/25. Then I think I will be adrift. I think I know what you mean, when this is all done. This BC stuff has ruled my life since January 24, the day of the BiRads 4 mammogram....
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Good luck tomorrow jpmom - sending you hugs and positive healing.
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jeez, i almost cried at work when someone asked me about radiation. Why am i so emotional about this? I think I am having a harder time going into this than chemo. Or maybe i am just not remembering. Goodness I hate this. 3 hours until my first treatment.
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Jpmom- Hang in there. I tear up too every so often, sometimes it seems for no reason. This is all a lot to deal with, body and soul, and it just happens, just let it.
There's really not a day goes by that you don't wake up thinking about it - I have cancer, what appts do I have today, what do I have to do or not do, because of the BC, what amount of crap am I going to feel like today? It's like consuming all. Even when I only think about it once during that day, it's still once. How long after this is "over" before you don't think about it every day? What else will I do with my time (HAH!)?
Sissydi - keep us posted, I also have very sensitive skin and so I'd like to know about anything that works for you.
For creams, the gave me Mometasone to apply after rads, then like 4 hours later they suggest using Fruit of the Earth Aloe. I didn't know about starting to lotion up prior to rads, and I'm starting Monday, so I suppose I'll at least start now. I burn really easily, am fair skinned, etc.
Had the education and planning sessions yesterday, they confirmed I will start on the 17th. At least I got the 4:00 pm time slot so my work schedule won't be too messed up. Everything seemed to go fine. My tats are also very small, they are black, but you really have to look for them, they are like pinpoints.
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Rosey- thanks for sharing all of that, it's good info. I'm sorry about your mom.
What great sisters you have to do that for you! I plan on celebrating when this is over, just not sure what to do yet! I guess I'll know when the time comes.
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hello Ladies, I will be starting reds most lightly sometime in october. I have a consultation on the 17th of september I don't know what to expect? All I know is all my doctors are saying i am at the easy part now I did chemo and had my surgery. i am at the healing stage... is there is something you can use to advoid getting burned like are there any prevented measures i can take?
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Hi darnette. I was advised by a member on these boards to start using Glaxal Base and pure aloe... I also have my appts. on 17th and 18th. Everyone says if we have been through chemo and surgery, rads are a walk in the park compared to that - I hope they are right. You can get Glaxal at Costco's for the cheapest price. Good luck.
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Oh and start using it now rather than waiting until the rads start.
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Hi--I'm pretty new to these forums--I want to thank Aruba for pointing me in this direction! I had my first appt. with my RO yesterday and will have the simulation on Sept. 19th. I spent a lot of time researching radiation and the RO's that are available at this cancer center. After telling my RO that my biggest worry was the heart issues since radiation can cause premature hardening of the arteries and ALL the women on my mother's side of the family have died of heart disease, this was important to me. He explained how he would 'block' my heart. I asked him if they did prone positioned radiation. He was very surprised I knew about it. He said they did do it and if that would make me feel more confident, he would do it. Now the question is why wasn't this offered when I emphasized how important the heart issue was?!? At this point I don't know much more about the number of treatments. All I know is that for the boosts I have to be the supine position. I'm going to be interested in how much info they give me regarding creams, etc. I got the aloe and I made a list of the creams that earlier rad boards liked. I'm going to get some and start using them now. Has anyone been told they have a seroma from the surgery and how that will affect the rads?
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I just had my first radiation treatment and of course there is nothing to it. No worse than lying still for a bunch of xrays. Its just the idea of it that i hate. I hate that i have to do it. I hate that 17% of my lung and part of my thyroid is involved in the radiation field. My doctor says that 17% is good but it sounds like a shit load of lung to me. Apparently i am "fortunate" that she can treat all my nodes including the inframammary ones. While I dont exactly consider myself fortunate these days I guess i am glad they can nuke everything.
1 down 32 to go.
I havent started any creams yet. My rad onc just recommended doing it within the first week. they have ALRA cream and deoderant and recommended aquaphor if the burns are worse.
The first appointment will just be informational. Its easy just to listen the first time and then make a list of questions. They usually give a lot of information in printed form. Then they will start scanning you and marking you and some places like mine will do tattoos to guide them in lining you up precisely. They make molds of the head and upper body to help positioning too.
Everyone says that rads is easy compared to chemo. I sure hope so. Everyone is different but usually by the time we get here we are through the worst.
I am a little emotional today about all this but it is getting better now that i have done the first treatment.
Best wishes rads sisters!
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