Totally Confused ...

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Bark
Bark Member Posts: 2

Had lumpectomy on March 26. Very tiny tubular cancer in left breast. Surgeon said shegot it all and margins clear and lymph nodes clear. Radiation oncologist asked if I wanted radiation and I said do I need it and he said I didn't have to have it. Medical oncologists gave me prescription for tamidex and told me about side effects and would have to take 5 years. Now I'm thinking I might be better doing radiation and not take the med. I haven't started taking yet ... but if I did radiation would I still need the meds. Totally confused ... sorry I don't explain too well. I'm 73 and feeling real good and don't want to mess up with wrong decision

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  • gb2115
    gb2115 Member Posts: 1,894
    edited April 2020

    Hi there! Welcome to BCO!!

    Not sure what you mean by tamidex....do you mean either tamoxifen or arimidex? They are both types of hormone therapy for breast cancer.

    Getting radiation will not remove your need for hormone therapy. Radiation kills tumor cells that could have been leftover. Hormone therapy targets hormone positive cancer cells that may have escaped the breast area, as they can easily do even if the lymph nodes are clear.

    Usually radiation is done after lumpectomy, followed by hormone therapy. Did the radiation oncologist say why you didn't have to have it?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2020

    Here is a linked study that discusses omitting post-lumpectomy radiation in patients over 70, and how survival rates are affected, and why it may not be necessary in indolent low risk cases for older patients. It is important to note that these patients did take anti-hormonal therapy for added protection. The only aspect of treatment left out was the radiation.

    https://www.ascopost.com/issues/april-25-2015/prime-ii-and-the-omission-of-radiation-therapy-in-low-risk-elderly-patients-undergoing-breast-conservation-the-time-has-come/

  • Salamandra
    Salamandra Member Posts: 1,444
    edited April 2020

    I agree with the other posters that the two questions are mostly separate, although only you can make the holistic calculation for the level of risk you feel comfortable with.

    Hormonal therapy (tamoxifen or arimidex, not sure which you are being recommended) directly helps prevents distant metastasis by suppressing cancer that might have already escaped the breast (and also helps with local recurrence for the same reason). Radiation therapy directly helps reduce local occurrence by destroying any cancer cells that might be left in the breast - and indirectly helps reduce metastatic recurrence because local recurrences can lead to metastatic recurrence before being detected even in women being actively followed for risk.

    Radiation done well is usually very well tolerated. I met a woman getting radiation with me who was in her late 80s and doing fine. The motivation for skipping radiation is older patients is because it is less likely that a local recurrence will occur and/or have time to metastasize within their natural life time anyway. But for someone who hopes to have another 10-15 years, it can still be a real benefit. Another concern is that the older we get, the harder that surgery tends to be on a body. So even if a local recurrence was caught early, the recommended surgery might pose more quality of life issues/risk than the radiation now. Of course, the added wrinkle right now is increased exposure/risk of Covid19 by going regularly for radiation.

    Hormonal therapy is like sugar pills for some women, and some women try every form of it and can't find one that is compatible with quality of life. But the nice thing is that they can be tried and quit if you don't like the side effects.

    Is there a social worker or nurse coordinator affiliated with your center that could help you talk through your specific case and the doctors' recs and the research, so you that you can feel you're making an informed decision?

    On the one hand, this is all very stressful with so many unknowns and it's impossible to ever be 100% sure you've made the best possible decision. On the other hand, the good news is that actually for most of us, it doesn't really matter what we do - there's a good chance we'll be fine no matter what, and also it's never possible to be 100% sure you've made the wrong decision either, since bad outcomes can happen even with all the most hyper cautious forms of prevention.

    Good luck!

  • Bark
    Bark Member Posts: 2
    edited April 2020

    Thanks so much for the replies and additional information. The medication is Arimidex and the side effects really are a big concern to me as I'm sure they are for anyone that reads and understands the side effects. Every medication I have ever taken has given me weird side effects. The radiation oncologist said it was my decision on radiation and he felt if I didn't take it studies showed at my age of 73 that I had such low risk of occurrence it would be okay. So I thought good.... no radiation. Then when the medical oncologist called me for phone conference she said she would prescribe this medication and I would have to take it for five years. I thought sure I can do that... no problem. Then when I read the effects I didn't know what to do. I have received so much good information from you guys and this site and now have figured out there is so much I don't know and wasn't informed of it by the oncologists. So I am going to research some more, form my questions to the oncologist and go from there. Thanks to all of you. My middle of the night rant nearly broke me but feel better now and will try to make some kind of rational decision. I guess I just needed those well spoken words by BC ladies.

  • redhead403
    redhead403 Member Posts: 125
    edited April 2020

    I had a small one, 45 mm with many microcalcifications. I had bilateral mastectomies. Margin wasn't clear. So I had radiation. My medical oncologist said that an aromatase inhibitor would decrease my chances of recurrence only by 1 %. I had radiation. Just know that there are side effects with every treatment, still have pain and hyperpigmentation of my breast. I decided that I would forego AI's. I took HRT before diagnosis. There was a lot of misery for me being off HRT. Trade offs are not great. BTW was 69 when I was diagnosed. I am hoping I can live with them.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited April 2020

    Listed side effects for any medication are possibilities, not even probabilities. They have to list them all for legal reasons.

  • dtad
    dtad Member Posts: 2,323
    edited April 2020

    AliceBastable...side effects are listed in chronological order of frequency. Of course anyone can experience any side effect or not but its a good way to help in the decision to take or not. Good luck to all.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2020

    The SEs of any medication sound pretty scary but they are often rare. I think one reason I have tolerated the AI fairly well is that I didn’t have much estrogen before I started. At your age, you probably don’t either. You might not notice much of a difference at all. I do think it helped me to take it every other day for the first few weeks. The AI can be very important in helping prevent recurrence—in my case more important than chemo.

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