Winter 2013-2014 Rads
Comments
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Hello everyone. I had my first radiation treatment today. Only 29 more to go! My last treatment is scheduled on January 23rd. The technicians took a few port films to start, I was marked with a red marker around my breast and then the actual treatment. They will do these port films once a week to make sure everything is still in the correct position. The machine buzzed as I was radiated -- I believe around 13-14 seconds on one side, then the arm came around and radiated the other side (of my right breast) for another 13-14 seconds. The entire process took about 15 minutes. The tech then scheduled the remaining treatment visits. I work at a high school 10 minutes away from the hospital, so it's very handy for me. I was supposed to meet with my radiation oncologist today, but she was in another room. I will see her tomorrow during my treatment time. I too am curious when the fatigue and skin changes kick in. I was pretty nervous, but it looks pretty quick, easy and of course painless during treatment. The only hard part for me is that my arms ached being over my head, as they did in the simulation. but it was over soon. Looking forward to other's comments as we go through radiation this season. Hope it works out well for everyone. -
thx Rosecal954 for keeping us updated, happy it was easy. Also nice it is so close to your school. -
Glad to hear things are going well for those starting already! I had my simulation today & start rads Monday. The tattoos are extremely small (just dots) - I have 3 but only one on my chest - other 2 are on my sides, one on each side. My RO said skin reaction won't generally start until treatment 21 or so. Can't wait until we're done with this phase! Lana -
Welcome MovingForward -- Welcome, and thanks for the tip on the deodorant. My perspiration seems to have shut down during chemo, but I am sure that won't last long, lol! -
RoseCal -- congrats on crossing #1 off on the calendar!! -
3 down 13 to go! I am living my worst nightmare. Snow, more snow, 1 hour travel on black ice. We were late yesterday, bumper to bumper on highway du to so many accidents & cars in ditches. My armpits are soaked by the time we got there. I keep telling hubby i'm going to cancel next couple of days, but he wants to go & get it done. Just drive slow. We put new tires on yesterday just in case. The drive is going to kill me before the cancer.
Had endocrinology class yesterday. It was done with the ladies that are at their 2 yr mark & switching off tamoxifan. Then after that you get a one- on one to discuss your hormone therapy plan. They only list like 4 side effects for Tamoxifen. I found the class useless.
Today I have my Rad then 2.5 hrs later have PT. Not sure why I have PT class. Guess I'll find out.
NP says burning legs & facial neuropathy should be gone in another month. Don't like this facial stuff. Something must be trying to heal cuz the other night it felt like I had a big bug crawling on top of my head.
Big hugs to all, drive safely. -
70charger, I hope your drive gets easier. Thanks goodness your hubby can go with you. Lets us know about the PT. I wish I had a quick PT session, to make sure my underarm incision is healing correctly, I should be more proactive & make an appt with a PT.
Do you think the weird feeling on to of our head could be hair growing?
Good Day & keep warm Rads group -
for those of us having rads (mine do not start until march, but I am learning from all of you), I had a conversation yesterday with a 30 year survivor who has had lymphedema since her surgery. She could not stress to me enough the importance of having a physical therapist trained in lymphedema management and recommends getting baseline measurements. My RO told me that radiation increases the chance of lymphedema by 30%. My BS has been downplaying this, but I am going to insist the next time we meet that I need a referral to a PT. If he won't give me one I will get one from my PCP.
I hope your hair is growing back! -
Did not go to my PT appt. Got in did Rad & got back home due to more snow & bad road conditions to begin with. Stopped in at PT, they gave me the handbook to take home. Exercises in there are the same ones you do after surgery to ward off Lymphedema. Not even one new one. So unless you are having problems keep doing what you are doing, if not doing exercises, start doing them. 4 down 12 to go. Suppose to get another 8 inches of the white today, not sure how much tomorrow. Another bad accident at our off ramp onto the highway. Fire/Rescue was on scene when we came home. Come on Spring! -
I have been reading everyone's comments and I think you are all so brave. I have to be the biggest baby ever. It took me 3 weeks to make an appt. for my biopsy, then almost 2 months to have surgery. I was supposed to have simulation and planning yesterday and I cancelled appt. as my stomach was acting up. Probably nerves. I am dreading lying on the table, holding still, and having the cat scan and measurements. I know I need to do this, I just have so much anxiety over it all. -
ginderda, the sooner you start, the sooner you finish...I am looking forward to it.. Sounds crazy, maybe, but after 8 dose dense chemo treatments this is a day at the beach....speaking of the BEACH, we need to have a vacation, travel blog when we are done with rads, describing how we plan to spoil ourselves for completing this horrific journey ...
Have a good day -
For those of you about to start, Summergal posted this in response to sloyd on the Fall Rads thread -- it is a great description of what happens at set up appointment, so I am Reposting with her permission -- hope it is help to you radiant gals!
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Hi, sloyd - your set-up will include the following:
1) Forming the mold that you will use each time you go in for rads (this is a blue, "beanbag chair" kind of thing - you lay back on an inclined plane and they'll have you put your arm up on top of the beanbag. The techs will position your arm so that it will not be touched by the rads machine as it moves around you (it doesn't move while it's emitting radiation, but it will move into different positions/angles in order to effectively deliver the rads), then when they have your arm in the right position, they do something that firms up the material in the beanbag and, voila, that will be the mold they use so that your arm is in the same position every time.
2) The CT Scan - This should not take too long...but you will be asked to hold your breath at some point (I'm pretty sure everyone having the CT sim has to hold their breath even if they're not doing gated breathing). The breath-hold could be several seconds (maybe 20 - 30; mine was for 45 seconds), but it's totally doable. Let your techs know if you have any anxiety about claustrophobia. The CT sim machine is in a ring shape with openings on both sides, so you won't be in there as you might in an MRI.
3) The tattoos - The last thing they will do is place permanent little black dot tattoos in the areas where they will line you up for every rads session. I noticed that, on the side where I had 2 nodes removed, I hardly felt the tattoos going in at all, but on the side where I had only one node removed, I felt it a little bit. A tiny bee sting and then it was gone.
Hmmm...about the timing - I would want to make sure you are totally healed. You may do very well, skinwise, in rads...but some people have moderate to severe skin issues as a result...you would want to have healed skin before it could possibly become compromised by radiation. I think most people feel comfortable starting around 6 weeks, so if it's possible to give yourself that extra week, I would.
Here's a link to a site that discusses suggestions for food dos and don'ts during radiation.
Hope this helps! Don't worry - you will be just fine!
Synchronous Bilateral Breast Cancer, No Chemo, Gated Breathing (Deep Inspirational Breath Hold) Radiation Therapy -
Holeinone, I love your idea of a beach party -- I live about 5 miles from Seal Beach, so I will take some pictures when the time comes, to get the party started. -
TeamKim, Take me instead of pictures! -
Haha -- beach blanket pocket party!! -
Holeinone - I use this icon bec. my biggest hobby is sewing
Mostly historical costumes, plus I'm an old-school goth, so the combo of scissors & a pirate skull works for me.
Tattoos - mine are so tiny. Just pinprick dots, I can't tell which are the tats & which are freckles. I'm still surprised that the techs can find them & line me up correctly each time.
All this talk of vacations, love it. My hubby & my 2 BFFs & their partners are all going to DisneyLand in February to celebrate my being done w/chemo & rads. Can't wait! -
ginderda, I feel bad my post was not more sympathetic to your anxiety. I hope you are able to get in there soon. I really think you will be able to handle it, the simulation part might be overwhelming, & I am sure going every day can be tiresome but we really have no choice...I live fairly close, my grocery store is on the same path, it will be part of my existence for 6 weeks & hopefully it will do its job. Chemo was a nightmare, but I knew it had a job to do, & my job was to stay strong & be positive, or sometimes pretend to be strong ( when kids are around ). Keep posting, we are in this together... -
Ginderda - I was a little nervous about the planning, simulation and tattoos, and was very pleasantly surprised how quick and painless it all was. Like Holeinone now I just want to get it done, let it do its job and move on with my life! You can do this! And remember you are never alone in this fight - every one of us are there for you and we will all get through this together! -
Teamkim - thanks for keeping us going and for the link to the site about what to eat during radiation! I guess I will stop taking my multivitamins and omega 3's.
Rosecal - I'm glad your first session was so easy and hope you have little side effects. Keep us posted on how you are doing!
70charger - So scary! This really makes winter rads hard for you! I am hoping we don't have too many snow days during my treatment. We have a storm coming in on Saturday but it should be all clear for Monday.
Ginger - I am sorry you are so scared. I was really really worried about the biopsy and then the surgery.I have already had my simulation and tattoos. It was really easy. You have already been through worse!! You can do this!
Lana - We start Rads on the same day - Monday.
Holeinone - I am a sewer too!
I am anxious to get on with this process. I was diagnosed on August 3rd and it feels like it has been forever! I am glad that the skin side effects and fatigue won't set in before Christmas. January is definitely less crazy and I'll find it easier to rest!
I am glad to not be alone in this process! Hang in there everyone! -
Thanks, gals for all your input. I will be thinking of all of you that have gone through the simulation before me and I will keep saying to myself "I can do it".
I decided today that after I do the simulation I will treat myself to something. Since I live in Las Vegas, it's pretty easy to find something fun to do. I always stress over everything when it comes to medical procedures and I end up making it worse than what it really is. I am very thankful that I don't have to do chemo, just the radiation and I just started taking Arimidex. -
so happy to hear that those of you who have started are doing well. That is of course other than the inclement weather. I'm not a fan of winter, it just interferes with life too much
I was supposed to meet with my RO yesterday, only to have him call me and say that there was no point in me coming in since he did not have the pathology report from my surgery. Without the pathology report he can't plan the specifics of my treatment. I had surgery on December 2, they are being really slow. I'm rescheduled for next week. I just want my pathology report back, heck I think I'm going to ask for a copy, frame it, wrap it and put it under the tree when I get it. All I want for Christmas now is my pathology report!
Any one do chemo prior to surgery and have a pathologically complete response and then moved on to do radiation?
As for holidays when all of this is over, looks like Walt Disney World in January 2015 will be it for us. I want to run the Dopey Challenge so we will turn it into a family trip. -
Cancelled my Rad tx today. Going in would have been fine, but coming home we would be driving in another blizzard. 2 more inches with 30klm wind. Roads are already bad enough . My body needs a break from all the tension. -
FYI - my setup didn't have any beanbag thing nor did have to hold my breath. The positioning will really vary depending on where your tumor was & what kind of machines they have at your treatment center. For both the CT scans & actual rads, I lay on my back with my right arm back above my head propped in an adjustable padded brace - my tumor was on the right breast at the bottom. The CT scanner is a tube rather like an MRI but not quite as big & noisy, & the radiation machine is a table with arms that move around you. I always think "rise of the machines!' when they start, but I'm a dork. Total time on the table has got to be under 3 minutes - it's less than a pop song, bec. the radio is usually playing & never gets thru a whole song I spend more time in the waiting room getting into / out of the gown.
My procedure is so far just like what 2 friends explained to me, one is local & the other lives across the. US, so I expect this is yet another standard type.
Seriously for those who haven't started yet, this isn't that hard. You can do it! Much easier than surgery 'cept that it's every day. -
Batcatlady -- how long of a break did you get between the end of chemo and starting rads? -
great ? Team Kim, I am having to wait about a month, & I am getting anxious, nervous & crabby..lol.. -
My setup was similar to batcatlady1 -- didn't have a mold or beanbag, the techs said nothing about holding my breath in the CT, I think I have 6 tattoos. The radiation machine has arms that swing around. On the days port films aren't taken, I would say the entire process takes 3 minutes plus a minute or two to get dressed. I keep hearing "radiation is a piece of cake compared with chemo or surgery", even my radiation onc. dr. said that to ease my mind. I didn't have chemo; this is the only treatment I've having so maybe this is kind of scary for me. Maybe it is a piece of cake. I have 3/30 sessions complete now and I'm feeling fine. What has been the hardest for me is the long wait -- 12 weeks since lumpectomy and actual starting radiation. I have been extremely anxious throughout this whole ordeal, all the waiting for Dr. appt., test results, insurance approval. Now I'm seeing the radiation process is no big deal, but I'm still a nervous wreck. I'm only a stage 1, Grade 1, had a 1 cm. tumor and there are so many others with far different situations. I feel really ashamed to feel like this. I've dropped 15 lbs. not on purpose since my cancer dx in August. I keep telling myself there is light at the end of the tunnel andI know I will get there. I not sure why I feel this way and at times feel like I'm going crazy. Maybe I should see a therapist. On the outside, at work I'm fine, later at home I fall apart and having meltdowns. Thought I would share. Plus I've pretty much decided not to take Tomoxifen, that is bothering me too. Thank you Team Kim. for having this topic. I am very interested as our sessions go along how others are doing. I long to feel even somewhat "normal." -
(((((Rose))))) I know how you feel, I am stage 1 grade 2 but I have had many meltdowns since I was told I had BC. It is what I am finding for right now is a new normal. I can tell you what I try to tell myself and it doesn't always work and that it is ok to cry and be emotional. I am also debating if I want to see a therapist. Do you have a social worker who is on your team? Mine has been very helpful...I don't have the answers just wanted to give you a hug and say you are not alone. Take care...M
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TeamKim, thank you for telling me about this group. It's really great to have so much support on these boards. I have a RO appointment next Thursday and I'm not sure when I will start rads. Had my lumpectomy on Dec. 4th.
Oncearunner, I did have chemo before surgery but unfortunately I didn't have a complete pathological response. I had two tumors though, one being triple negative and the other HER2+. The triple negative responded well - went from 1.4cm to 3mm - almost a complete response. Unfortunately the HER2+ was a little more stubborn. It went from 1.5cm to 1.4cm. I'm hoping the year of Herceptin will take care of any residuals. I'll keep my fingers crossed that you have a good outcome on your pathology report.
I wish you all minimal side effects and I will share anything I can as I move forward with this next phase. -
I go for my simulation on Wednesday. I am hoping that I don't have to hold my breath because I am not good at holding it.
lovewins and rose, thank you for sharing your melt downs as now I don't feel so alone. I have been feeling guilty that I cannot control my thoughts better. I am trying to reactivate my presurgery routines because they get me out of the house which seems to help me feel better emotionally although not the same as before dx. -
I don't think we would be human if we didn't have the occasional meltdown. Everyone has their flashpoint -- my meltdowns are triggered by changes in plans... I so desperately want to feel like I am in control that if something changes suddenly (like my chemo protocol did in the last two weeks), it sets me off. I have learned that we need to be gentle with ourselves .... Yes, we are strong, and we are brave warriors in this fight, but we also need the release of the occasional tears. It enables us to regroup and fight another day. Many cancer treatment programs have a cancer life coach or a social worker, or a support group, if you feel the need for extra support, give yourself permission to seek that help. And as long as you are here on the BCO threads, you always have us in your pockets! ((((Hugs))))
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