Radiation confusion

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I have a 0 on the Oncotype test, and they said only radiation and hormone therapy. No one can explain to me why I even need the radiation . The Dr said the hormone therapy will starve the cancer cells even in my other breast if they are there. So why even radiation, anyone with the same confusion. I'm suppose to start Monday Dec 3 , scared to death.

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  • DanceSmartly
    DanceSmartly Member Posts: 69
    edited November 2018

    Did you have a lumpectomy? If so, the "standard of care" for lumpectomy is surgery + radiation. Radiation is intended to reduce the risk of a local recurrence (cancer coming back in the same area of the breast as the original tumor). Hormone therapy prevents estrogen from stimulating cancer cell growth in the breasts, while chemotherapy is aimed at cancer cells that may have migrated to other areas of the body. Hope that helps?

    Happy to hear you got the ultimate Oncotype score!

  • Dreamer54540
    Dreamer54540 Member Posts: 12
    edited November 2018

    thank you, I had a lumpectomy with clean margins. All they told me on the phone is I got a zero and I don’t need cemo, I don’t have to see the Dr and they set me up for radiation. I went for the practice one, got the markings and the girl took pictures of my breast. When the other left she said oh the camera broke I’ll be right back and brought her personal cell phone in and took three pictures. Then she said I promise these will not end up on the internet, but I couldn’t find another camera. Today I call there and she said I’m sorry I deleted the pictures and they will take them over on this Monday. Just creeped out about all of this

  • Julesm59
    Julesm59 Member Posts: 24
    edited November 2018

    Hey Dreamer,

    What a great oncotype. Mine was 7. However, the oncotype is only for telling us and the doctors if chemo would be beneficial. Really doesn't do anything for the radiation treatment or hormonal therapy. I just started radiation today. 5 mins and done. I am only having 16 treatments. So 1/16 done. Yeah. It really isn't so bad. They want to track your skin progression for deterioration. I would guess the pictures are for that, however, what a mess up on the tech's part. I would think that they would have more then one camera in the whole department. I would tell them that taking on there personal device is not acceptable at all, unless they gave you written verification that the pictures are veritably deleted and only used for your chart.

    Good luck on your treatments, you got this. Easier than surgery.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2018

    Hi - not to step on anyone's toes but this statement, above "Hormone therapy prevents estrogen from stimulating cancer cell growth in the breasts, while chemotherapy is aimed at cancer cells that may have migrated to other areas of the body." is not correct.

    The effects of endocrine therapy "hormone therapy" are not limited to the breasts. AIs and Tamoxifen are active systemically, just as chemo is, although their profile, duration and side effects are, of course, very different.

    Good luck with your treatments.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2018

    Hi there. Dreamer54540-

    Welcome to BCO! That really is a great oncotype, but we're sorry to hear about the picture mishap! That is quite strange, and certainly not very professional. We hope it all gets cleared up on Monday and you're able to get set up with your radiation treatment!

    The Mods

  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2018

    Radiation is standard of care after lumpectomy, they should have told you that while discussing surgical options...even with clean margins they can't guarantee that they got all the cells out, especially along the biopsy needle track and the surgical incision. Hence radiation. My risk of recurrence (that they told me) was dramatically higher without radiation.

    You'll be ok on the 3rd...the actual process of radiation isn't too bad, just keep an eye on your skin and get rest.

  • DanceSmartly
    DanceSmartly Member Posts: 69
    edited November 2018

    Hi Hopeful,

    Thanks for the clarification, and I agree that the effects of hormone therapy are not limited to the breasts. I should have been more specific in what I wrote because I was thinking specifically of Tamoxifen, which is intended to be a selective estrogen receptor blocker for the breasts, as opposed to AI's which target estrogen production from sources other than the ovaries. I think it is important to note that Tamoxifen is not active systematically in the same fashion everywhere in the body; my understanding is that while it blocks estrogen receptors in breast cells, it does not do so in uterine or bone cells and can actually stimulate these cells.

    Dance


  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    I'm not sure why but my experience has also been that doctors have a really hard time explaining radiation.

    The evidence for radiation significantly reducing local recurrence is very strong. The evidence is also consistent that this makes a real life saving impact for at least a subset of women.

    But you know, I suspect that the medicine doesn't fully understand how/why radiation works? We have almost a century of evidence that it does, but it's all experimental.

    I was very interested why it seems so important to do radiation right after surgery. Surgery is kind of arbitrary, right? It doesn't have to do with the age of the cancer, just when you happen to discover it. The doctor couldn't really explain. But there are studies that show that delaying more than a certain account increases recurrences.

    It's kind of unsatisfying. On the other hand, experimental data is the best data right?

  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2018

    All I had to hear was that radiation would cut my probability of recurrence in half and it was an easy decision to make. The process itself isn't bad at all--just a pain to have to go five days a week. The appointments are very quick. My skin never got too bad and I only had fatigue a couple of days. Many women tolerate radiation extremely well--I wouldn't worry about it.

  • kinderkel
    kinderkel Member Posts: 8
    edited November 2018

    What is oncotype?

  • yarn612
    yarn612 Member Posts: 2
    edited November 2018

    I had a lumpectomy on 10/3, margins were clear, lymph nodes were clear. I started my radiation on November 8th. had radiation on the 8th and 9th. On the 12th, machine was down, so that week I had 4 treatments. The week of the 19th, I only had 3 treatments because cancer apparently takes the holidays off. This week, I had treatments on Monday and Tuesday, and the machine was down (again) Wednesday and today. I am extremely concerned that the effectiveness of the radiation will be greatly reduced given the sporadic treatments. Any thoughts?

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    It seems to be the number of treatments that count rather than how consecutive they are, I guess it all has to do with cumulative effect.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2018

    Hi Yarn612-

    Oh, that is very frustrating! Like Alice mentioned, the frequency isn't as important as the number of treatments you complete. Hopefully the machine issues are resolved quickly, so that you may finish up your treatment!

    The Mods

  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    yarn, that's super frustrating. Especially when you know they'd be yelling at you if you were the one cancelling/missing the appointments.

    It does seem like missing appointments has an impact: Missed Radiation Therapy Sessions Increase Risk of Cancer Recurrence. Can you ask them to schedule you somewhere else for treatment or get an urgent second opinion? It feels like they are skating on thin ice with this broken machine thing and jeopardizing your treatment. I'd be really pissed.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    I was told that as long as any missed sessions are tacked on at the end, there would be no problem. I think really long breaks are discouraged, however.

  • egregious
    egregious Member Posts: 240
    edited December 2018

    Hi yarn,

    My cancer center does treatment weekdays with holidays off, but they also will allow a break in treatment for my mother's funeral or even if my skin gets too red. So missing a day or two is likely fine.

    You had your surgery a week after mine and I just started rads two days ago. So they weren't in a great big hurry, and this is a major university cancer center.

    Hope they get the machine fixed and that the rest of your rads go smoothly.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2018

    I had my lumpectomy in early July and re-excision in early August, and didn't start rads until late October, due to another surgery in September that needed more recovery time. I was told that radiation should start within 3 months of the latest breast surgery, so I was okay going from re-excision on August 8th to starting rads October 29th - but I was pretty sore still from my other surgery the first few weeks of radiation, and probably acted rather unpleasant a few times. Woopsie.

  • yarn612
    yarn612 Member Posts: 2
    edited December 2018

    Thank you for all the replies. I had a hard time finding this thread again so I bookmarked it. The machine is back up and running, 13 treatments down, 3 to go, then 4 boosters. I am an RN and have always worked in critical care and ER where everything needs to be done immediately or someone dies. This is my first time ever being ill and on the other side of healthcare, and I find it completely frustrating and actually quite shocking on how long it takes to get scheduled, approved, procedures done, etc. Spoke with my radiation oncologist today about the machine being down and gave him an earful. He said stop worrying so much because I have a predetermined amount of radiation to receive along with the boosters based on my films, surgical report, etc. Thank you all again.

  • PebblesV
    PebblesV Member Posts: 658
    edited December 2018

    Dreamer - if it helps, I'm 26 out of 30 radiation sessions completed and I barely have any side effects. The radiologist even commented to me today how well I'm faring, so it's absolutely possible to skate through this just fine. I completely understand the anxiety and fear... please know there are a lot of us that get through this with little to no side effects. Lotion a lot! I use 100% pure aloe vera gel and miaderm.

    RE: why you need radiation, if you did a lumpectomy, they do radiation to get at any cancer cells that might be remaining in the area, localized to the breast (and nodes if needed). Then the hormone therapy is to try and 'mop up' any cancer cells in the body outside the local area where the tumor was, so that they don't gather and become another lump and to prevent metastases.

    That's how it was explained to me anyways and via research, the surgery took care of the initial tumor, the radiation and hormone therapy is there to prevent a recurrence.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2018

    Hi Dreamer54540,

    The fact that someone took a photo of your breast with personal smart phone really creeps me out too! At the very least, it's unprofessional. Have you discussed it with any one in authority in the staff.

    Radiation freaked me out too but actually it was easier than I thought. Most sessions were five minutes or less. The driving back and forth was actually more of a pain than the actual treatment. At my age, (74) I got very fatigued after each treatment but not everyone experiences this.

    Hopeful8201…you wrote: 'The effects of endocrine therapy "hormone therapy" are not limited to the breasts. AIs and Tamoxifen are active systemically, just as chemo is, although their profile, duration and side effects are, of course, very different.Good luck with your treatments.' It confirms and is counter to what others have said in this thread. I'm really confused.

    A few weeks ago, I asked my oncologist if the AI I'm on is effective throughout the body or only the breast. Maybe I misunderstood but she said it only treats breast cancer.

    Is there a medical person in this forum who could perhaps clarify!?

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