Port films

olivesew
olivesew Member Posts: 16 Member
edited January 28 in Breast Cancer #1

I would be interested in hearing breast cancer radiation experiences with port films, the extra weekly xrays taken during radiation to check the machine alignment with the tumor area. Were you told ahead about these port films, or was this information withheld from you?

Comments

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #2
    https://csn.cancer.org/discussion/327532/port-films

    I too was surprised by them - I'm two+ weeks in and have already had THREE. I am told they take these once weekly. I've decided I'm not going to make myself crazy with how much radiation I'm being subjected to at this point. I was already headed in to 3X-recommended radiation "treatment" kicking and screaming.

  • olivesew
    olivesew Member Posts: 16 Member
    #3

    Hi LifeinBloom100,

    Thank you so much for answering. I had given up hope that anyone would answer. I wasn't so upset about the extra xrays as the fact that the keep these xrays secret. I was told on my first day of treatment that the first day would be slightly longer, but after that the treatments would be "quick". The next 5 days were identical "quick" treatments. I never in my wildest dreams thought that the next treatment would be any different. As soon as that treatment started, I knew something was different. The machine rotated in the opposite direction and I saw devices moving around me that I had never seen before. I was completely disoriented and it scared the living daylights out of me. I felt like my mind flew out into outer space.

    I was so angry that they hadn't taken 15 seconds to tell me that the rotation would be different. I came very close to quitting. Later I was told," Oh,,we can't tell people about the port films because they get scared and don't show up for their appointment. " To me it seems immoral,of them to withhold this information from patients. From that day on, everyday I was suspicious, what are they not telling me today? What surprise is in store.? Well one day, "Oh, a 2nd CT scan coming up!!!! " This has been almost a year ago, and I am still traumatized by it. I am so angry still. I had started out so positive, and my first week, I was coping so well, and they ruined the whole experience for me with these secret port films.

    Good luck with your treatment. I would trust that you are getting the amount of treatments you need.

    I got the skin cream Miaderm and it was good. You could start using it.

    Let me know how the next weeks go. Thank you. Olivesew

  • nursejulie
    nursejulie Member Posts: 3 Member
    #4

    I was and still am very hesitant to take the radiation. I have experienced nausea, headaches and fatigue. They just keep telling me only the fatigue is related to rads. Smh. But to answer your post my team told me before about the x-rays. Showed me the machine and explained why I have to complete another CT half way and upon completion. I wish you the best. And as a nurse really feel they should have explained everything to you in advance.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #5
    https://csn.cancer.org/discussion/comment/1712457#Comment_1712457

    I too have been told the few other new and unprecedented "symptoms" (such as the headaches, dull lung pain, cross-chest pangs of pain, and the once-ever nausea I just experienced for the 1st time at the end of the 3rd of 5 weeks) is unrelated to the radiation OR correlative to it (as in the case of tissue expanders further exacerbating inflammation of cells by radiation, hence causing what the doctor is suggesting accounts for what I decsribe as dull lung pain). Just the insomnia and fatigue is related, he has said.

    I am also on Lupron injections and will be on Anastrozole when radiation is through, so I cannot say I know more than the physicians about what is actually going on inside. I truly just wonder whether my notes about my experience are being discounted, and I hope not dismissed if something else is happening.

    And @olivesew, I too am concerned about the additional radiation, which both the radiation oncologist and radiation therapists say is "such a low dosage" (multiple times??!?!). At this point, I've given up on worrying, because they're doing what they're doing, and late toxicity effects will be what they will be at this point. I'm worn out a bit in life anyway, having gone through quite too much grief and loss in the year preceding this diagnosis and finding myself alone on this journey at a fairly young age. So while of course I want to find the will to fight for my life and would like to live and see if I can rebuild a life, I have decided I can only do what's within my control at this point - eat well, exercise and try to earn a dollar.

    So sorry for this rather morbid Sunday diatribe. My outlook changes frequently, I'm noticing.

    But I'm grateful to be here, and for all of your lives, too.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #6

    Woops - for clarity, I meant to say (above) "...is causally unrelated to the radiation... or IS correlative..."

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #7

    @olivesew Oh -- I'd forgotten to mention: I bought Miaderm, per your recommendation. COmbined with RemeVerse radiation relief cream, (Boiron-brand) Calendula First Aid Cream, AND Calendula Burn Cream... they seem to keep the skin issues at bay for now. Though I've got a dusty-rose colored armpit and a faded Pink Lady-Apple-hued parallelogram burn across my left chest so far. 😦

  • EmpressSammi
    EmpressSammi Member Posts: 19 Member
    #8

    I was only told about the x-ray in the beginning of radiation. After it began i just figured it out based on the plate that would come over me. Sometimes they would tell me but mostly they would forget, just added a few small minutes to my treatment. Good luck with your treatments i hope for all who are still in Radio may it go quickly for you and your skin recover fast.

  • olivesew
    olivesew Member Posts: 16 Member
    #9
    https://csn.cancer.org/discussion/comment/1712713#Comment_1712713
    https://csn.cancer.org/discussion/comment/1712713#Comment_1712713

    Hi Express Sammi, Thanks so much for answering. It is nice to hear what others experienced in the radiation. I guess I am the only one who was so psychologically affected by the unexpected change in the machine rotation. I guess because the first day I was misled into believing that my treatments would all be the same, being told that after the first day (in which I closed my eyes), my treatments would be "quick" and then having 5 identical "quick" rotations, it just completely disoriented me, maybe a spatial relations effect when the machine rotated in reverse and I saw all new devices on the machine arms that I had not seen before. I was mad too , because even, afterwards they didn't tell me that it was because they were doing the port films, they just called it a misunderstanding. It just caused me to mistrust everything, and to wonder every day, what are they going to surprise me with today?

    https://csn.cancer.org/discussion/comment/1712713#Comment_1712713

    Hi LifeinBloom100,

    Thank you so much for answering. I had given up hope that anyone would answer. I wasn't so upset about the extra xrays as the fact that the keep these xrays secret. I was told on my first day of treatment that the first day would be slightly longer, but after that the treatments would be "quick". The next 5 days were identical "quick" treatments. I never in my wildest dreams thought that the next treatment would be any different. As soon as that treatment started, I knew something was different. The machine rotated in the opposite direction and I saw devices moving around me that I had never seen before. I was completely disoriented and it scared the living daylights out of me. I felt like my mind flew out into outer space.

    I was so angry that they hadn't taken 15 seconds to tell me that the rotation would be different. I came very close to quitting. Later I was told," Oh,,we can't tell people about the port films because they get scared and don't show up for their appointment. " To me it seems immoral,of them to withhold this information from patients. From that day on, everyday I was suspicious, what are they not telling me today? What surprise is in store.? Well one day, "Oh, a 2nd CT scan coming up!!!! " This has been almost a year ago, and I am still traumatized by it. I am so angry still. I had started out so positive, and my first week, I was coping so well, and they ruined the whole experience for me with these secret port films.

    Good luck with your treatment. I would trust that you are getting the amount of treatments you need.

    I got the skin cream Miaderm and it was good. You could start using it.

    Let me know how the next weeks go. Thank you. Olivesew

  • EmpressSammi
    EmpressSammi Member Posts: 19 Member
    #10

    I feel for you i really do. I told everyone in my care team do not sugar coat anything, i want to know everything, no hiding. i do lots of research on my own and i would be angry and lose my respect and confidence in them. I feel like you need to tell them that they shouldn't hide things from you any longer. Tell them it affects your mental health and in turn it will affect any cancer treatment/phase you get in the future.

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