Anyone else skip radiation? Even with micrometastisis?

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  • pupmom
    pupmom Member Posts: 5,068
    edited April 2017

    MexicoHeather, so sorry you are joining us here, but it is a great place to get support and information. I'm not a doctor, but don't you want to do everything you can to prevent a reoccurrence? IF your team recommends radiation, I would seriously consider doing it. But it's not clear that they have or will. Best wishes!

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited April 2017

    I was reading a Clinical Oncology News article yesterday about how oncoplastic surgery immediately after lumpectomy in the same OR is on the rise and will be the wave of the future. In order to address the problem of the tumor-cavity shifting after OPS and making it difficult to accurately assess where to aim the rads, there are tactics that can be done during the lumpectomy: additional clips, special radio-opaque sutures delineating margins, even a bio-absorbable spiral studded with clips that can be sutured to the tumor cavity.

  • pupmom
    pupmom Member Posts: 5,068
    edited April 2017

    ChiSandy, that's amazing stuff!

  • Artista928
    Artista928 Member Posts: 2,753
    edited April 2017

    With 3 nodes involved alone I would do rads. It's not that bad. Of course I speak from my own experience, but I was more scared of Adriamycin chemo on my heart than rads. I didn't want to chance anything even when my tumor was initially said to be 4 cm and no pallpable node involvement. Whatever decision you make, make sure you are at peace with it. gl

  • ReginaZ
    ReginaZ Member Posts: 41
    edited April 2017

    Hi everyone,

    I've decided to skip the rads as the RO told me that, in my case, the radiation would not at all increase my odds of survival, and I am not willing to chance even the low risk of permanent side effects from radiation for the reduction in risk of local recurrence. I would do anything to save my life, and for many, radiation may be an important part of that. For me, I am diligently taking my Arimidex, eating my veggies, and exercising daily!

    Love to you all

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited April 2017

    Hi MexicoHeather!

    You haven't met with a RO yet, to get information about radiation therapy and a personalized recommendation. It's possible that the RO won't recommend radiation therapy for you. (Apparently your MO isn't willing to predict what recommendation you'll receive.)

    I suspect you've been reading about bad experiences from a number of women. But of course women who didn't have problems with radiation treatment are less likely to spend time posting about their experience. So you may have received a biased impression based on the discussions of side effects/lasting effects you've seen. (For example, I didn't have any major or lasting difficulties with the Mammosite radiation I received after LX.)

    And there are many different kinds of radiation treatments that can be recommended. If you're not happy with what you hear in your consultation, you might want to ask the RO you meet with if there are other types of radiation therapy that might be appropriate for you that aren't offered at his/her facility. And if you don't like what you hear, you might inquire about a second opinion at a larger/academic/NIC breast cancer center near you, where you might be able to get a different form of radiation therapy.

    At any rate, try not to make yourself miserable today (and in the days between now and then) worrying about not wanting radation...at least until someone recommends it for you. ;-)

    Best wishes,

    LisaAlissa

  • CCtoo
    CCtoo Member Posts: 41
    edited May 2017

    hi, just saw your post...had lumpectomy oct. 2016...idc, had oncotype test and was low so oncologist Said no chemo...did not do recommended radiation...also, had side effects from Arimidex, and now Tamoxifen too!! So I am basically doing nothing and I feel fine. Once. Wants me to take Tamoxifen tho! I am afraid of getting uterine cancer or stroke from blood clot from it...I do not understand how drug to lower estrogen does the same thing as estrogen , premarin , does!!! Give you a buildup in uterus which can cause uterine cancer. I don't want to take a drug for cancer recurrence, that can also Give!! You cancer!! So I am 80....but no one guesses that! Can someone explain how Tamoxifen works to prevent cancer when it can give you cancer?

  • CCtoo
    CCtoo Member Posts: 41
    edited May 2017

    do you get side effects from Arimidex?

  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2017

    I had one positive node (small amount but just over a micromet) allowed radiation to the axillary and supraclavicular nodes. The RO said this is what I am doing, and I said OK. I am 38 and want every chance to watch my little girl grow up, even if it means long term side effects.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited May 2017

    I had NO micromets, no positive nodes and a smaller tumor than you, ReginaZ, and still did radiation, which I pretty much sailed through. I can’t understand how a competent RO would tell someone (presumably not elderly) with a Stage IB tumor—and a positive node—that radiation after lumpectomy would offer NO survival benefit. (Especially with the tumor being right-breast, so there would be no heart issues).

    And CCtoo, Tamoxifen at 80? WTF? Simply because one has side effects on one brand of anastrazole doesn’t mean that the same thing would happen with brands that have fewer inactive ingredients, or with the other aromatase inhibitors letrozole or exemestane. Let me explain the difference between an aromatase inhibitor (AI) and Tamoxifen. ONLY the AIs “lower estrogen,” by keeping the liver enzyme aromatase from converting the androgens made by the adrenal glands and fat cells into estrogen. But Tamoxifen does not, I repeat NOT, “lower estrogen.” It does not reduce the amount of estrogen in the body, nor does it act on the estrogen itself. What it does is block ER+ tumor cells' estrogen receptors from accessing whatever estrogen is in the body. Think of an ER+ tumor cell as a refrigerator. AIs take the aromatase circulating around the “fridge” and “spoils” it before it can turn androgens into estrogen. Tamoxifen puts chains and a bunch of padlocks around the “fridge."

    And yes, Tamoxifen can cause a buildup of endometrial cells that could turn cancerous, which is why many oncologists recommend removing the uterus in women on Tamoxifen even after the ovaries have shriveled up and died. (Even if the uterus is removed, Tamoxifen can increase the risk of retroperitoneal cancer—in the part of the lower abdomen behind where the uterus used to be). You should also know that, being 80 and therefore at far greater risk for cardiovascular disease than younger women who haven’t reached menopause, Tamoxifen increases the risk of blood clots (which can travel to your brain and cause a stroke, to your heart and cause a heart attack, or lungs and cause a pulmonary embolism which can kill swiftly). AIs don’t.

    Talk to your medical oncologist. (Maybe, at 80, “doing nothing” for what is likely an “indolent” or slow-growing bc is not as big a risk as it would be for a 66-yr-old like me, especially since you’re likelier to die “with” rather than “from” breast cancer down the road). And ReginaZ, no disrespect, but you would be wise to get a second opinion from another RO. Yes, taking a systemic adjuvant therapy (in your case, an AI) is absolutely necessary, and exercise & a mostly-plant-based diet (without sugar, refined starch and processed food) can’t hurt—but you are truly rolling the dice by not getting local therapy (radiation). You would be increasing the chance of leaving behind tumor cells that could crop up later in that breast…or even metastasize.

  • CCtoo
    CCtoo Member Posts: 41
    edited March 2019

    Thank you....just read this. At 82 now, doing nothing , as felt with heart issues, lower estrogen would not be good for my heart and severe osteoporosis. However, now getting occasional pain under arm where more surgery performed and sometimes other parts of breast, my Dr.says I need diagnostic 3d mammo. Does pain mean recurrence? Praying.

  • CCtoo
    CCtoo Member Posts: 41
    edited March 2019

    what does stage 2b mean?

  • CCtoo
    CCtoo Member Posts: 41
    edited March 2019

    Hi, Ruth, just read your reply to me...so sorry for delay. My lumpectomy was done Oct. 2016. .blood cancer markers are very low...9. Under 38 is normal info said. But now I have some pain I never had, under my arm where sentinel node surgery was done. Concerned! Have to have diagnostic mamm o next week. Hope pain twinges do not mean recurrence...I have done nothing but take beta glu can.

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