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Starting Radiation December 2019

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2

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  • redhead403
    redhead403 Member Posts: 65
    edited January 2020
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    Why are you not able to get a good treatment plan for some women? Do you mind sharing what some of the impediments to creating a good treatment plan? I am more curious that most, and my RO has been very reticent about sharing info. The therapist indicates that there are collators (sp) used to prevent heart and lung damage by blocking certain structures. Also, Since I have had a mastectomy and have little breast tissue left, I am concerned about skin burning and peeling. Also they are hitting my axilla, with therapy. My nodes were negative but my superior margin wasn't clear, had dcis. I am having 30 visits. not sure why. Sorry to be bending your ear lol. I am 69 if that makes a difference, think it probably does

  • cowgirl13
    cowgirl13 Member Posts: 778
    edited January 2020
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    redhead, have you thought about having a second opinion? It's possible you might find a radiologist who will discuss these issues with you. It's not the same, but I found my oncologist, whose terrific and I have been seeing him for 10 years, after getting a second opinion.

  • tldougan
    tldougan Member Posts: 6
    edited January 2020
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    2_good_gourdz A fellow Dec 26th starter! How are your treatments going so far? For me the itchiness has subsided. I notice swelling in the tissues in my chest causing some tightness and uncomfortableness but other than that so far so good. Oddly the spot that hurts must is my left back just behind my armpit. No idea why - they are treating left side but not the armpit.

    Hiw awful regarding the woman at your appointment today with the open sore. Let's hope we both avoid that fate!

  • redhead403
    redhead403 Member Posts: 65
    edited January 2020
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    Cowgirl13, Yes I actually have had one. I went to Mayo down here for a consult for proton beam therapy. She sent clinical notes to me that did not mention proton therapy at all. Odd, since that is why I was seeing her. When I asked why she didn't include it, She then added it and blocked me from responding. Her plan was three weeks of hypofractionated, no boosts. My insurance didn't cover Mayo to I obtained Medicare, but after that message I do not want to go there. I am finding that most RO don't want to be questioned. I could be wrong, but that is what I am finding. Btw I lived in the bay area for 10 years ending in 2004. I miss the weather!

  • cowgirl13
    cowgirl13 Member Posts: 778
    edited January 2020
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    Well, I don't blame you for not wanting to use the second opinion radiologist. Not good at all. Not addressing the proton in the first clinical notes and then blocking you after she added them. Bad, bad news, I would think.

  • redhead403
    redhead403 Member Posts: 65
    edited January 2020
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    Thanks Cowgirl13 for your support


  • deweygirl19
    deweygirl19 Member Posts: 21
    edited January 2020
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    REDHEAD403 I'm happy to answer your question, I'm not a doctor I'm a certified medical dosimetrist. We take the doctors prescription for XRT and design it to give the maximum dose to tumor (or in breasts case tumor bed) with the least dose to organs in the area.

    To answer your question about treatment plans, I was referring to the hypo-fractionated plans. We are limited a lot more by the maximum hot spot for those plans because the dose is so much more per day. If we can't reach those goals we don't do it. We always get a good plan!

    My guess as to the reason your doctor isn't offering hypo-fractionation is that you had a mastectomy with reconstruction. You are correct you don't have much tissue and in order to reduce the damage to your skin your doctor is giving you conventional fractionation. With the information you've given me your doctor is doing the right thing. :)

  • tldougan
    tldougan Member Posts: 6
    edited January 2020
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    Hi all. Today completed 7/30. Already starting to get pink (all over) and some soreness behind left armpit. I am getting radiation on both sides, and they are using a bolus to target skin. 25 sessions + 5 boosts. So I am expecting a bumpy journey.

    How is everybody else doing?

    Terry

  • chaclarey
    chaclarey Member Posts: 62
    edited January 2020
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    Hi tldougan,

    I’ll cross my fingers for you and hope it’s not to bumpy.

    I had 11 of 20 today. 15 regular and five boosts. My nipple is red and sensitive and my boosts next week will go directly to nipple. Rad tech told me today they will be paying close attention to it. I’m a bit tired and was a little weepy yesterday, but halfway done so that’s good. Wishing all December’s speedy treatments and healing.

  • redhead403
    redhead403 Member Posts: 65
    edited January 2020
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    Deweygirl19:

    Thank you for all of your help.. I was able to meet with another RO in the practice today and he allayed all of my fears. He showed me the CT scan, and showed where the treatment would be Only scatter in the axilla and totally missed heart and told me that lung should not be an issue because radiation doesn't affect air (is that true?) It was a small sliver of lung. I asked all my questions and they were answered. They are doing fractionated because will cause less damage to the skin by doing more treatments in more time. Anyway it was a good experience and start tomorrow for 6 weeks. You definitely were helpful. Thanks again I will post how Treatment is going

  • cowgirl13
    cowgirl13 Member Posts: 778
    edited January 2020
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    redhead, I'm so happy to hear this. What excellent, excellent information.

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    I haven't seen my CT scans for radiation treatment yet. But I am curious, can they detect suspicious lymph nodes or axillary cording?

  • Mouse57
    Mouse57 Member Posts: 32
    edited January 2020
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    Hi MikaMika

    My report from my CT scan said the lymph nodes looked normal so they do look for that. Also that my lungs were clear, thyroid looked normal and other organs looked okay, so they do look for things like that. Mine was done at the local hospital and I got the report from the patient portal. I don't think they can detect cording but I am not sure - in any case it was not mentioned. I could feel the beginning of cording in my underarm after surgery but it went away with my stretching exercises. It felt like a wire in the armpit and they breast surgeon said to press on it while doing the stretching.

    - M

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    Mouse57,

    Thank you so much for your response!

    Was this CT scan done during mapping for the radiation treatment? Or it was separate CT scan with contrast?

  • Mouse57
    Mouse57 Member Posts: 32
    edited January 2020
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    MikaMika

    The CT was done Dec 30 without contrast as preparation for radiation mapping (the report noted that lack of contrast "limits evaluation of vascular structures and solid organs)

    The radiation center here is next to the hospital where CT was done - the radiation room itself takes ordinary x-rays.to confirm positioning so that was done this monday before radiation started tuesday.

    Before surgery I had an MRI in Seattle where I traveled for surgery which did use contrast and also said the lymph nodes were normal size - there were microscopic mets in the sentinel lymph node though but not big enough for further surgery - that is why they are getting radiated though.

    -M

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    Mouse57,

    Thank you for explaining everything to me! I wish I could give "Like" to your posts!

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    deweygirl19,

    Hello, may I ask your professional opinion?

    My main fear regarding the breast radiation treatment is about radiation "scattering" to my neck and collarbone. What should I pay attention to in this case?

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    Maybe anyone had their CBC blood work done during radiation treatment? How radiation could potentially affect some parameters?

  • redhead403
    redhead403 Member Posts: 65
    edited January 2020
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    Could drop your wbc below normal.

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    redhead403,

    Thank you so much for your response!

    I thought something should be higher because of inflammation from radiation.

  • chaclarey
    chaclarey Member Posts: 62
    edited January 2020
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    Hello December’s,

    I am in final week of radiation. I have a 3 left. Last night I noticed some yellow tinged clear fluid coming from around my nipple. Probably tmi, but it’s pretty sore and I’m wondering if anyone else has experienced this. Thank you.

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    ChaClarey,

    Are you taking Tamoxifen during the radiation?

  • chaclarey
    chaclarey Member Posts: 62
    edited January 2020
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    Hi MikaMika,

    I had started tamoxifen two weeks before starting radiation on December 17 and took until December 23. I was have severe hip pain so my oncologist stopped and ordered x ray and bone scan. X-ray results normal and I’m awaiting bone scan results. I also had a baseline dexa bone scan on Jan 2 and to my shock I have osteoporosis (I’m 51 and perimenopausal) in neck and spine, so tamoxifen will be only option for hormonal treatment. I meet with oncologist next week to discuss. This is probably more info than you wanted. :

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    ChaClarey,

    Thank you so much for your response! I've started my radiation on January, 9th. Yesterday my oncologist gave me a prescription for Tamoxifen. Today I was ready to take the pill, almost swallow :))) But I decided to ask my RO. And he is strongly against Tamoxifen during the radiation treatment. I am not sure what he thinks about AI. I am really surprised. Both MO and RO work together.

  • rain88
    rain88 Member Posts: 160
    edited January 2020
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    Hello, ladies. I finished 15 days of rads and 4 days boost on my right breast on Dec. 23, 2019. I was a bit worried before starting, as I didn't know how rads will go for me, but I was fortunate to only have mild reactions (also being off from work helped a lot). I've been using moisturising CeraVe cream (recommended by a dermatologist friend) a bit obsessively at the beginning 4-6 times a day, but now I only apply it twice, morning and night. Aveeno body wash is really gentle on the skin. When I shower (even now) I cover my breast with a thin cotton towel, so the water doesn't get in direct contact with my skin.

    MikaMika, regarding Tamoxifen, my MO advised to wait until I was done rads. I am glad I did, for I can hardly sleep and I have very little appetite. I have a follow up at the end of the month and I will see what he recommends. I am also hopeful that my body will get used to it and it will stop reacting so strongly. Hugs xxx

  • cowgirl13
    cowgirl13 Member Posts: 778
    edited January 2020
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    I just wanted to share that I was not put on Arimidex until I finished radiation. I can't imagine doing this.

  • mikamika
    mikamika Member Posts: 242
    edited January 2020
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    rain88, Cowgirl13,

    Thank you so much for sharing your experience!

  • chaclarey
    chaclarey Member Posts: 62
    edited January 2020
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    Hello all,

    I was actually part of clinical trial to determine if starting before or after radiation made any difference in toxicity. I decided to be part because I was starting to convince myself that I didn’t need to do hormonal therapy(scared). I was only on two weeks when oncologist stopped it due to severe hip pain, so they won’t get a lot of data from me. :)

  • chaclarey
    chaclarey Member Posts: 62
    edited January 2020
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    Finished radiation today Wohooo.

  • redhead403
    redhead403 Member Posts: 65
    edited January 2020
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    Congrats