Spring 2016 Rads

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited June 2016

    congrats Sheri.


    Halfway for me today, 13/25

  • PlanB58
    PlanB58 Member Posts: 157
    edited June 2016

    image

    PaxtonHere is my very stylish gown! Anyone else reminded of boxer shorts?

  • Katzpjays
    Katzpjays Member Posts: 237
    edited June 2016

    PlanB-that photo could be me. I think our clinics use the same designer

  • Grazy
    Grazy Member Posts: 373
    edited June 2016

    PlanB, yep, that's pretty much identical to what I wore too, and I'd wear a second one turned the other way as a "robe" (I was swathed in "boxer shorts fabric").

    Paxton, at least your paper gown looks a little stylish - you have a waist ;)

    Congrats on being half way through, LTF!

  • Paxton29
    Paxton29 Member Posts: 221
    edited June 2016

    PlanB, such cute hair! I think your gown may be a *wee* bit too big ....

    I knew y'all would envy my chic paper kimono.

    Today I told the RO that I had been noticing I feel tightness in my chest, like my tissue expanders have gotten heavy. He said they're not actually heavier (which ... right), but the radiation does cause contracture so I need to stretch. He showed me a couple which I promptly forgot, but I have been trying to do chest-opening exercises. Anyone else feel something similar, whether you have natural breasts or these concrete hamburger buns?

  • gardengypsy
    gardengypsy Member Posts: 769
    edited June 2016

    Yes, we'll make it to the front cover of Vogue before you know it.

  • gardengypsy
    gardengypsy Member Posts: 769
    edited June 2016

    Paxton,


    I am doing all the exercises they gave me post-mastectomy.

    https://www.mskcc.org/cancer-care/patient-educatio...

  • tbalding
    tbalding Member Posts: 449
    edited June 2016

    Congratulations, Sheri! Enjoy your weekend & celebration!

    Paxton, love the look! :)

  • Carlsoda
    Carlsoda Member Posts: 249
    edited June 2016

    Grazy, thank you for the tip on the potential lung condition, I will watch out for any similar symptoms. I wasn't aware of this possibility...in fact I feel like I am unaware of a lot of stuff like the breathing technique. My RO came highly recommended by my BS, MO and BC nurse at the hospital so I feel he must be good. I just need to get a few nagging questions answered!


    I also found out today oncotype came back with low risk (yay!) and got the ok to start radiation from my MO. Good news

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2016

    Another word on the breathing--I didn't use any mask or goggles or anything. Just me and my two strong lungs. :-)

    I am loving all of the pictures. Maybe we should put together a calendar?

  • Grazy
    Grazy Member Posts: 373
    edited June 2016

    Carlsoda, you probably weren't aware of it because it's very rare. It was mentioned very much in passing during my RO consultation and something I thought about briefly toward the end of my treatment, but I haven't had any issues whatsoever.

    Ingerp - I think the gown pictures are great too! I posted my last day "gong" photo sans gown (but then deleted it after a few days, haha - it was just a quick peak at what our center does to recognize the end of treatment), but I'd love to see pictures of anybody ringing their bell or any celebration they might have had at the end of treatment.

    Last day before the weekend break, ladies! Go and tell the machine to #RadiateTHIS!!!


  • New-girl
    New-girl Member Posts: 358
    edited June 2016

    Paxton- I am doing #16/33 today.  My breast does not feel heavier but yesterday under my arm felt very sore. My back also was hurting so much last night I took motrin.  I haven't been to the gym this week so I can only think it has something to do with the radiation.  I see the doctor today but so far any of my concerns " have nothing to do with the radiation" so I would rather come here and ask. 

    My skin is still holding up well with just the itchy bumps driving me nuts.  Using cortisone cream and looking forward to a two day rest from driving to treatment. 

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited June 2016

    my upper back is so achy too. Hmm.

  • radonlady
    radonlady Member Posts: 7
    edited June 2016

    I am going for my CT Sim next Thursday. I have to make the decision between 4 weeks of radiation or 6 weeks. It's the same overall dose, just spread differently. Anyone have any input or does it not really matter which one.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2016

    I honestly can't remember if I posted here or in another thread (is radiation brain a thing?) but after someone complained about back/shoulder pain I asked if it might have something to do with holding tension while on the treatment table?

    I just finished third boost so 18/20 done. :-) I got some gown information (I told them about the whole "boxer short material" conversation here). Big Bob (the male tech I usually have) said he spent like an hour on the phone one afternoon talking to the gown company about how they might improve them. Apparently there are only two companies that make them. He asked about velcro closures--the guy said they wash 200-400 at a time and with velcro they all turn into a big ball and don't get clean. Bob asked about longer strings to make them easier to tie--same thing with the big ball. Bob asked about snaps--they rust. Apparently they've heard it all before but the gown guy said if Bob has any more ideas to be sure to call. :-) And Bob said they did try some more fashionable ones several years ago but people kept stealing them. We all agreed *nobody* is gonna steal these. . .

    I also asked a bit more about how deep my boosts are going--just out of curiosity. Earlier this week I learned about the photon beam (for whole breast) vs. electrons (for boosts). Mine are frequency 12, so go about 4 cm down and stop. The science in this stuff continues to amaze me. (I met the head physicist earlier this week. Who knew?)

  • FGodmother
    FGodmother Member Posts: 52
    edited June 2016

    Radon Lady, I went for my sim yesterday. Because I am having my left breast radiated, I had to be sure by inhaling deeply that my heart would move out of the way. I was able to pass the test, so I am having the hypofractionated (Canadian protocol) shorter course for 16 WBI and 4 boosts. I begin next Thursday, the 16th. Hypofractionated is double the strength of the usual protocol, so can be completed in half the time. There is an article here on BCO that mentions patients have fewer SEs with the shorter course. I am sure hoping so!

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited June 2016

    I don't bother tying my gowns, the one outside comes off, and I take my arm out of the lower one. So just doesn't make sense. Here I am looking sexy!


    image

  • PlanB58
    PlanB58 Member Posts: 157
    edited June 2016

    Love the gowns! Jill you and Paxton have pretty blue ones!

    Our calendar could be called RAD WOMEN!

    I have only 1 more WB! YAY!

    Ingerp I was told same thing about my boosts today! I also will not need all the breathing equipment! So excited about that! I was also talking with my techs about the gowns but really emphasized that they need a lot of work on their accessories(breathing stuff)! Good to have people who will engage and play a bit.

    Have a wonderful weekend all

  • Grazy
    Grazy Member Posts: 373
    edited June 2016

    radonlady - I did four weeks - 16 whole breast treatments and 5 boosts - and had almost no side effects during those four weeks - I was just a little pink and never experienced fatigue. I was told to expect my skin to continue reacting for a week or two post-treatment and it did - I'm exactly a week out and I have what looks like a mild sunburn and lots of little bumps (irritated hair follicles, I'm told) - it's only the 'boosted' area that reacted. It's been easily treated this week and I'm doing great - feel completely back to normal today. Was a little fatigued until mid-week, but that's it. Based on my experience, I'd say go for the four weeks! Granted, my techs did say that I had a very easy go of it; others doing the same protocol may have had more skin reaction.

    LTF - love your gown ;) (and you look really great!). Btw, I finally broke out my Miaderm yesterday and it really helped with the itchiness of my bumps. My skins feels fine today, although it's still bumpy. Will take a while to go away, I'm sure.

    Congrats, all, on finishing another week!

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited June 2016

    For those that had MX first, how soon after did they start the actual radiation? I'm scheduled for my sim etc, exactly 3 weeks from mx on Tuesday the 14th.

    Sorry if I've already asked, getting nervous and appreciate all the help.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited June 2016

    Thanks to everyone for the well wishes and katZ for the story. It was much worse than anticipated. Had surgery yesterday am, I DO feel like the bottom of my stomach is dropping out , can barely get in or out of bed for horrible pain. I have had Terrible gas - bland jello. And water in a bowl with packet of salt to add to the water to make broth. 5 meals in a row. Finally said tomorrow I may have FULL liquid diet tomorrow. Maybe this means some crackers with the salty soup mix ? Lol!!!

  • PlanB58
    PlanB58 Member Posts: 157
    edited June 2016

    LG- So sorry to hear this! The diet alone sounds awful! Sending you positive thoughts for healing. I hope it gets better very soon.

  • Grazy
    Grazy Member Posts: 373
    edited June 2016

    Oh, LG, I hope you're feeling better very, very soon! Sending hugs. Food sounds..... delish. *yuck*.

  • mltdd
    mltdd Member Posts: 87
    edited June 2016

    Just finished 28/33!

    LTF- My upper back is achy too. Hmm?

  • tbalding
    tbalding Member Posts: 449
    edited June 2016

    LG, also sending Poitier thoughts for relief from pain!

    Radonlady, I'm doing 16 & 5 boosts. RO said I could th 33 treatments but he thought 16 & 5 would be a good choice & I want to be done while there is still summer left. Nurse told my DH that I should "breeze" through it. Hopen she's right.

    FGodmother thanks for the to regarding the accelerated treatments.

  • Deaconlady
    Deaconlady Member Posts: 158
    edited June 2016

    Only 1 more WB to go! I'm ready to lie on my back for my boosts. I'm so uncomfortable lying on my stomach. So happy it's almost over. Hope you all have a restful weekend.

  • Katzpjays
    Katzpjays Member Posts: 237
    edited June 2016

    Radonlady - I have just completed 7/20 treatments. The routine can get old. 4 weeks lets you get it done much more efficiently. I too wanted to salvage as much of the summer as possible. I haven't had any side effects so far.

  • muh
    muh Member Posts: 15
    edited June 2016

    I'm so scared out about left-side radiation. Hi All, this is my first post and I am thankful to have found this forum to get some real stories and not just read studies on the internet! I am American, but living in Europe and I really wish I had been in the US when I got my diagnosis, at least that is my current feeling. I am trying to find the best way through this and any support or suggestions would be greatly appreciated.

    When I was first diagnosed I asked about mastectomy, even a double, no reconstruction, but was told "We don't do that. It's not necessary and it doesn't minimize risk unless you have a genetic mutation". So I went with it. I later learned that my "basic" insurance doesn't even cover a mastectomy unless I have a genetic mutation, which I don't (thankfully, I will add), but was told that my treatment has nothing to do with my coverage, that this is the standard proposed treatment for everyone with my cancer constellation. I understand there is a small chance that even with mastectomy I might have needed radiation because though my cancer is small it is really close to the chest wall. (I am trying to believe all of this is happening for this reason...) I really wanted to avoid radiation, in particular because the cancer is on the left and I read a recent study that for every Gray of radiation the heart receives the risk of heart disease goes up 7.4% starting 5 years after treatment and increasing thereafter (I'm now 49), not to mention increased risk of lung or other cancers from radiation (I am doing 25 whole breast photon (X-Ray) radiations over 5 weeks, 2 Gy per session, with another 5 boost treatments to the tumor area (2 Gy each of electron radiation). I'm doing the breath-hold technique, but on my back. My breasts are small and my chest is bony, and due to tumor location, no way to avoid a bit of the lung.

    The radiologist at the hospital is less than sympathetic. When I mentioned my concerns and wondered if mastectomy wasn't safer her response was only "I can stop the treatment if you want. There are risks. I can't take that away" I said I would continue because my choices were radiation and tamoxifen or only tamoxifen and I want to minimize risk of recurrence. Never a discussion of "maybe mastectomy is better for you". I really wish I had been in the US.

    To make matters more complicated, or possibly worse, after such negative experiences and then beginning the treatment and learning my insurance did not pay for mastectomy, I asked my gynecologist if she had ever heard of such a thing. She said if I wanted to have a mastectomy she is sure the insurance would pay, the insurance company just needs a letter with justification, it will not be a problem, etc.

    Unfortunately I have now completed 2 weeks of radiation and it makes that answer hard to hear. I am so sad and wish I had known sooner I had an option (part of being a foreigner I think). My skin is starting to burn and swell (the radiologist said whether one is sensitive to the sun has nothing to do with how bad a reaction one has....I think otherwise!) I will speak with my gynecologist again on Monday, but at this point I think my skin would need to heal before I could even have a surgery and maybe a break in treatment is not the best thing to do. I mean who knows what might happen during the weeks before having the surgery.

    If anyone has any feedback, left-side radiation info, etc, I would appreciate it. Thank you for "listening" and thank you for the forum!

  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2016

    I've been away just a few days, and I'm four pages behind! The desert dino bone dig trip was wonderful and they think my daughter actually found a tooth of an allosaurus! I pooped out after lunch though with only two hours left because it just got too darn hot for me. I sat under the tents, drank water and "supervised." Haha.

    I chose mastectomy and no recon, but still needed rads because of lymph node involvement. I am left-sided, too, but lie on my back for tx and don't do any breathing techniques, but maybe that's because of MX? The first two zaps are from below and the RO said that is to avoid my heart. I'm also doing post-MX exercises to stay loose and maintain good range of motion. BTW, my cloth gown does look like boxers now that I think about it! Haha.

    My skin is now beet red in the axilla, but just pink in the clavacle area. Wednesday, the RO said I should start peeling within two days, but so far so good, and no peeling. Skin to skin contact causes some discomfort, but the nurse suggested applying corn starch after the cream and it is fabulously soothing. I only have three treatments left; 22 of 25 done! Amazing how quickly the five weeks have passed. Welcome to all the newbies and congrats to those who are now finished!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2016

    (((LG))) Hoping you begin to feel better quickly.

    radonlady--I am so happy my ordeal will be over soon. I think a lot of us started rads thinking "This isn't so bad! The people are great and the appointments are easy and I am doing it!" Two more weeks wouldn't have been the end of the world but I am SO SO SO happy I'll be finished after 20 sessions.

    muh--I am really really sorry. I think the worst thing would be second-guessing your treatment plan. That said, I'm sure your doctors are giving you their best advice. You don't say what your dx was but I have a feeling that a year from now you might be happy it was only a lumpectomy. FWIW, I'm not terribly concerned about any heart involvement. The breathing thing gave me some added comfort but at the initial meeting with my RO she said, "I will not irradiate your heart. I just will not." She also told me I could get scared to death reading things about radiation impacts on the internet. I think the equipment/targeting is so much better these days.

    deaconlady--funny--I was on my back for whole-breast and on my side for boosts. It is kinda nice to change it up. :-)

    Grazy--you continue to be my heroine. I do think you've come through rads without about as minimal SEs as anybody I've read about. I woke up this morning thinking, "Hmmm--I wonder if my non-boost skin has turned a corner," although it seems like it always feels/looks better in the morning. Four days since my last whole-breast. I always just grab a few of my five different things (aloe gel, lanolin cream, cortisone cream, Miaderm, and calendula cream) and slather them on, but maybe I'll concentrate on the Miaderm based on your recommendation. (I think it was cortisone cream and aloe gel this morning, but I'm getting pretty itchy already.)

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