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Starting Radiation June 2021 Group

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13

Comments

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    Great news Star2017.

    Racheldog, my gosh, I'm sorry to hear about your wound. I had a reduction along with my lumpectomy and one of my wounds did not want to heal. It delayed my chemo start for 2.5 months. It was the vertical incision and part of the horizontal one in the crease. I ended up having a portable wound vac on it for a week or so which helped. Poor healing wound therapy does take a while. Mine is still not 100% healed. It's closed but has that scaly tissue on it. Good luck and keep us posted.

    I'm 9 days post radiation and the redness is going away, the little sores are almost gone. My blisters have not popped and are losing their fluid. Whatever I'm doing is right, so I'll stick with that.


  • racheldog
    racheldog Member Posts: 209
    edited July 2021
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    Kipepeo, thank you. Yes, I am pretty disgusted at this point. I am regretting radiation. I am changing and cleaning the wound daily and OMG I hope I do not end up with a wound vac. Two surgeons both thought about 4 weeks to heal but I will see what the Wound Clinic recommends on my appointment this week. I think RO underestimate the side effects that radiation can cause in some people and when something like this happens in a crease they are not specialists to deal with it. My tumor for the boost was at the 6 o'clock position and these last boosts were not whole breast radiation. Under my axilla (I had no nodes that were positive) is very darkened skin and unless there was scatter from the radiation or they came in from that side and shot through the breast to supero-medial I have no idea why that area took such a hit.

    I am definitely watching for infection. I have a port in and having a central line is a worry with any infection. No antibiotics yet as it does not look infected. I hope to goodness this never comes back. I would not do this plan again.

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    Racheldog, if you have to have a wound vac ask for the 3M/KCI Snap Vac. It's small, portable and inconspicuous. If needed I can hook you up with the device manufacturer rep. I got mine for free. This is the vac part, about the size of the old iPods, with tubing that goes to the wound dressing. Not bad at all.

    image

  • racheldog
    racheldog Member Posts: 209
    edited July 2021
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    Kipepeo, how kind of you for this info. I will see the Wound Clinic on Thursday. I have some Silver dressings on the wound right now and keeping it clean. (not Silvadene) I pray this heals on it's own. If someone designed a "breast lift" and patent it so under creases can air dry they would make a fortune! An untapped idea.

    Like yourself, this is going to delay my last infusions. I want this healed before what comes next. What a journey. Grateful for this website and for those who understand and have been there.

    Heart

  • CoastieMom
    CoastieMom Member Posts: 5
    edited July 2021
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    I start 6 weeks of whole breast radiation next Tuesday. I'm so glad to have found this community and this thread! I wish I'd found this amazing resource two months ago when I got my diagnosis! So many of my questions have been answered already just reading this thread, but I still have a couple questions/challenges....

    I work full time and have a 90-minute commute EACH WAY to get to my appointments. I'm definitely starting to feel anxious about how this is all going to work out. I'm an office manager for an electrical contractor, so it's me and 13 men at work....they've all been amazing and incredibly supportive. Maybe it's silly, but I'm wondering if I'm going to be able to wear bras throughout treatment? And if not, does anyone have any suggestions for going braless during summer while maintaining a sense of modesty? I'm fairly heavy chested so it's going to be a challenge.

    Thanks in advance for any tips!

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    Hi Coastiemom- welcome! This may not be helpful, because I was large chested but had a reduction during my lumpectomy. I was told not to wear a bra during radiation, but I did. My skin side effects didn't appear until about treatment #11, and that was a mild burn like sunburn. It wasn't until after treatment ended that I got any blisters. I treat those with the silver cream, cover them with gauze and still wear my bra.

    That said, there were some days where I would take the bra off as soon as I got home because it bothered me in the crease. I haven't yet developed anything major in the crease. But my smaller breasts are more manageable now, and I'm still a D size!

    As far as what to wear in lieu of a bra? Perhaps a tank with a shelf bra? I know that wouldn't have worked well for me pre reduction as my girls would have slid out from under that shelf.

    Basically I just did what felt right for me. If clothing was bothersome I changed it.

  • juju-mar
    juju-mar Member Posts: 200
    edited July 2021
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    coastieMom,

    Welcome! Today was treatment # 18 of 30 for me. My skin is only now looking "tan". I am able to wear a bra daily. My only issue is fatigue. But I had a single right side mastectomy without reconstruction, so no skin on skin areas. Good luck to you with that commute!

    Julie

  • CoastieMom
    CoastieMom Member Posts: 5
    edited July 2021
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    Thanks for the welcome and sharing what worked for you! I had a reduction 8 years ago and still would likely struggle with a shelf tank, but that's a great idea and I think I will get some and give it a try!

  • CAWR
    CAWR Member Posts: 13
    edited July 2021
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    Hi everyone. Congrats to those of you that are done! I just started radiation this past wed, and had a question regarding the marks you all received. I've seen that many of you got the tatoos, which is what I was told I could get if I didn't want the sharpie/paintpen/crosshatch sticker, but each time I ask about it, my rad techs don't seem to want to do it.

    When I asked them why they seemed apprehensive they told me it's because they don't really do it much with the type of radiation I'm getting (IMRT). Because of delay of insurance approval for this treatment I had to keep up with Sharpie on my chest for over a month. They put the stickers back on me with new paintpen marks, and it's hard to put lotion on and I keep sweating them off. I would prefer the tattoos, even if I do have to keep them forever.

    So I told you all that, simply to just ask if anyone has had the tattoos with this type of radiation treatment :)

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    Hi CAWR, I had 3 dot tattoos. The one near the areola is very visible as a gray dot. The one on my right side was very faint, but the techs were able to see it enough I guess. The one on the left was not visible so I got a sharpie dot and the clear tape circle that I had to maintain. I just didn't put cream on it.

    I also had to hold my breath during treatments. So I had a Sharpe line with the clear tape just above my naval that marked where the plastic breathing marker cup thingy went. Had to maintain that one too.

    I hate the one gray tattoo dot I have and will someday have it removed or dotted over in flesh color.

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    I had tattoos but still had the sharpie lines and stickers.


    Also, turns out I'm allergic to the tattoo ink and broke out into hives for a few weeks.

  • a-friend
    a-friend Member Posts: 10
    edited July 2021
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    Just getting started and figuring out how to chat with everyone. Just found out about a month ago , stage IV breast cancer. 2014 was when I had my left breast removed and has come back in the eye, lung and brain. Had mapping Friday and will start 10 day radiation in eye this week. Finished brain of 3 radiation last week

  • juju-mar
    juju-mar Member Posts: 200
    edited July 2021
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    a-friend, so sorry to read about the recurrence. Good luck going forward. I finished my 25 regular radiation visits today. All next week will be the boost radiation to the mastectomy scar. My skin looks darker for sure, but so far so good. I'm happy to be so close to being done, but also nervous! How do you transition to regular life and not think about cancer coming back? I have a feeling it'll be a daily struggle for awhile. Hope everyone is doing well!

    Julie

  • kipepeo
    kipepeo Member Posts: 70
    edited July 2021
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    Not to scare or be negative, but in reply to to Juju-mar about not thinking about recurrence...

    A co-worker of mine was treated for BC about 5 years ago and beat it. I'm not sure if she was cured or in remission. It returned about 3 years ago in her uterus as stage IV. She battled that, but recently passed away. She was 56. I am 57. I do not know if she had triple negative or lymph node involvement the first time. I did not. However, her struggle and death is weighing heavy on me right now. I'm really feeling my mortality.

    If you believe in people communicating from beyond, she has already said a few things to me. So far the most profound -

    My death is not your life.

    She is right.


  • CCRAIG0167
    CCRAIG0167 Member Posts: 3
    edited July 2021
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    Hi all

    Met my RO on 7/27/21 for mapping start Radiation on 08/3/21 5 days a week for 25 sessions, been flat since 06/29/2021 I am still recovering from the surgery and so tired i can only imagine what the radiation is going to do

  • juju-mar
    juju-mar Member Posts: 200
    edited July 2021
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    ccraig0167,

    The fatigue for me has been manageable. I will complete my 30 sessions this Friday. I find an afternoon nap is good. I'm working 12 hrs/week. I have more energy in the mornings. My radiation is at noon and by 3pm, I need to close my eyes for 15-30 minutes. I still walk or ride a bike daily. Good luck to you!

    Julie

  • ab45
    ab45 Member Posts: 153
    edited July 2021
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    CCRAIG0167

    Hi...I finished chemo and have about 1.5 week left of radiation. One thing to be prepared for is if they are radiating your left breast, you will have breath holds during treatment. Fatigue is manageable and no where near fatigue like chemo..you may also have to hold your arm behind your head which can be uncomfortable

    Best of Luck!!!

  • gretchenbuddy
    gretchenbuddy Member Posts: 5
    edited July 2021
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    AB45, How long do you have to hold your breath?



  • Esther01
    Esther01 Member Posts: 229
    edited July 2021
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    Gretchenbuddy,

    It's only one breath at a time and truly at your own pace. At mapping, the technician worked with me to figure out the best comfortable breath hold that was long enough to move my organs out of the way but not uncomfortable to hold in. We practiced a few times and then she said that's how we'll do it during my treatments.

    Blessings,

    Esther

  • ab45
    ab45 Member Posts: 153
    edited July 2021
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    Breath holds are based on the machine. For me I have to hold my breath 15 to 30 seconds several times throughout treatment. It will cut off if the breath hold is not exact. For.me when I am doing treatment it was completely different then mapping. Hope your treatments go smoothly. Mine have been challenging

  • gretchenbuddy
    gretchenbuddy Member Posts: 5
    edited July 2021
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    Esther01 and AB45,

    Thanks for the breath hold information. My first meeting with the RO is on the 13th.

  • juju-mar
    juju-mar Member Posts: 200
    edited July 2021
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    all done with radiation today! My skin is definitely sunburned and a tiny bit of peeling. The RN told me to call if anything changes. We went out for dinner with friends to celebrate. I feel confident and hopeful 😀 So glad we can all support one another during these trying treatments. Be well!

    Julie

  • star2017
    star2017 Member Posts: 370
    edited July 2021
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    Congrats, jujumar! Sounds like your skin held up well. Awesome news!

  • Esther01
    Esther01 Member Posts: 229
    edited July 2021
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    Oh Julie, Congratulations!!! So glad you're done and enjoyed a nice celebratory dinner with friends. You are always so encouraging and uplifting.

    May I ask, what lotion helped you the most in protecting your skin, and how often did you apply it?

    Blessings,

    Esther

  • juju-mar
    juju-mar Member Posts: 200
    edited August 2021
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    Esther01,

    I used the Mometasone cream the RO gave me daily after radiation, Aquaphor at night and Cetaphil lotion all other times. I'd try to apply lotion 2-4x a day. Some days were better at remembering to apply lotion. It's itchy where the band of the bra hits, so I've been braless this weekend. The skin is angry red and peeling like from a sunburn. I am staying out of direct sun as much as possible. And will continue to do so for the rest of the summer/fall. Good luck to you!

    Julie

  • Esther01
    Esther01 Member Posts: 229
    edited August 2021
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    Thank you Julie,

    I really appreciate the advice. I've read that the two weeks after treatment ends can also be rough on the skin but mercifully it gets better. Thanks again!

    Blessings,

    Esther

  • GreenOutdoors
    GreenOutdoors Member Posts: 68
    edited August 2021
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    Congrats to everyone who has completed their radiation treatment and good luck to those still undergoing it!

    I wanted to update. I completed radiation 3 weeks ago with red skin, no peeling and minor discomfort. The following 12 days my skin kept getting worse and I was pretty uncomfortable. They used a bolus during my treatment, at first I didn’t notice a difference but that area ended up being a lot more burned than the rest of the treated area. I kept the same skin care regimen until I felt better. I was able to work full time during treatment but was exhausted by the end of the treatment.

    My skin is darker but doesn’t burn or itch. My shoulder is stiffer than before treatment. Energy levels are ok

    All that to say, yes radiation is doable and no it’s not as bad as chemo but gosh I wish no one had to do it!

  • juju-mar
    juju-mar Member Posts: 200
    edited August 2021
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    wow - this skin is RED! Today is 9 days post radiation. I'll be glad when this coming week is done - hoping me skin feels better soon. My chest wall is just peeling and doesn't really hurt much. It's the underarm area that is hurting. Skin on skin when my arm is down. I'm using a small sterile pad and that helps a little. My energy is almost back to normal. I biked 8 miles the other day. Golfed with my husband a different day. Helped my brother and sister in law pack up their house for moving. Back to working three, 4 hr shifts from home. In September I go back to my full 5 day/week 4 hr shifts, for my 20hr/week job.

    Hope everyone is doing well and enjoying summer!

    Julie

  • ab45
    ab45 Member Posts: 153
    edited August 2021
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    Hi Julie

    I am 6 days post radiation...I too am suffering with underarm red, peeling, and pain. Ouch!! My collarbone and boob area are less painful. Not sure how long it takes to heal but this hottttt weather is awful, here in VA

    Best

    A


  • Esther01
    Esther01 Member Posts: 229
    edited August 2021
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    A and Julie,

    You've been so encouraging to us in the July and August groups as you completed radiation and are getting past the worst of the two weeks post-radiation discomfort. I hope you both have relief very quickly. I remember someone mentioning the "stern teacher" stance with hand on hip that keeps your arm away from the armpit. That was a great suggestion. I"m only 6 days out of 33, but I'm already planning to do that as soon as it starts getting uncomfortable.

    I love how active you have stayed. We organized our house a few days ago and I spotted my golf clubs. Can't wait to get out there again!

    Thanks again for your encouraging posts. I was wondering how you were doing post-radiation.

    Blessings,

    Esther