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Fork in the road: radiation or AI or both?

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Jewelweed
Jewelweed Member Posts: 46

My radiation oncologist just presented me with the possibility of skipping radiation and going straight to AI. This is partly due to everyone feeling that I am an excellent candidate for AI, and that radiation would t provide a huge advantage The twist of course is that I would have to be very committed to completing that AI.

As much as I would love to skip radiation, what if AI doesn't work out well for me? What if I am one of the women who gets the awful side effects?

AAaaggghh. Has anyone else had to grapple with this?

Comments

  • smoothoperator78
    smoothoperator78 Member Posts: 72
    edited October 2021
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    if it were me, I would not skip radiation if I had a lumpectomy instead of a mastectomy. If I had a mastectomy, I would still lean toward radiation if I had a high risk of recurrence.

    I would lean toward both, if it were me.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,051
    edited October 2021
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    Jewelweed,

    I was in a very different position than you are. Still, I had concerns about AI side effects. I spoke with someone who made a wonderful suggestion. Instead of going into it focusing on having side effects, I shifted my focus and went into it thinking that it was very possible that I would have no or minimal side effects. That mental shift felt like a weight was lifted off my shoulders. I have been on all three AI’s and although I have joint pain I have learned to manage and it has not diminished my quality of life. At stage IV, I am clearly motivated in a different way than lower stages but se’s may or may not be experienced regardless. Take care

  • josieo
    josieo Member Posts: 140
    edited October 2021
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    I would agree with SmoothOperator78. Both treatments are actually for different reasons as I understand. The radiation is meant to kill stray cancer cells that would not have been removed during a lumpectomy. The Ais (aromatase Inhibitors) are used to lower estrogen levels, which can fuel the growth of cancer cells.

    I did both radiation and am currently in year 3 of my aromatase inhibitor, with no side effects

    . exmbrngrl makes an excellent point about AIs. There are three different ones, and some patients find that they can move from one to the other to minimize any actual side effects. Mental attitude is a factor. I did the same-went into it not expecting side effects and do not have any. I stick with one product by one manufacturer.

    You can also ask the radiation oncologist if fewer radiation sessions would be viable vs none. There are different programs that can be customized to your case.

    Personally, I wanted the peace of mind so I opted for both. Do not regret it for a moment.

    Best wishes with whatever you decide

  • Jewelweed
    Jewelweed Member Posts: 46
    edited October 2021
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    Thank you, and obviously I will do everything I can to make this work. I'm just trying to look at my possibilities. I would *love* to bypass radiation, but not if it paints me into a corner. So difficult to decide this!

  • salamandra
    salamandra Member Posts: 745
    edited October 2021
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    Knowing what I know now, I would never make that trade off. But... it was never offered to me. Which makes me wonder more about the specific of your circumstances - your age, tumor profile, etc.

    FWIW, at my treatment center there was a much older lady (in her late 80s) getting radiation with me. Her oncologists insisted on radiation over AI, which she was strongly resistant against.

    Radiation reduces the chances of local recurrence which reduces the need for biopsies and surgeries. I think this is a huge benefit for quality of life that is underrated. It is well tolerated.

    Hormonal treatment reduces the chances of distance recurrence which extends life and disease-free life. But for some women, there is a real impact on quality of life and that impact is long term (http://www.unicancer.fr/en/unicancer-research/rd-u...).

    There is no way to know beforehand whether you'll sail through the meds (it's not uncommon - I have one colleague who reports no issues whatsover - but it can't be taken for granted either), struggle with them but through complementary treatment and adjustments find a way to tolerate them long term (this was me, and it was a pretty excruciating 1.5 years before I got there but sailing is looking smooth for now), or struggle with them for years trying to make them work and failing and end up needing to go off early.

    This is such a personal decision though. Are you in your 80s and will be happy with another 5 good years? Are you in your 70s with plenty of free time for radiation and hoping to make it to 90s and beyond? Are you in your 70s and still needing to work through and radiation treatment would be a financial burden due to loss of income? Can you (financially and otherwise) afford a long period of diminished capacity if you end up needing to experiment with AIs to find one that works for you, or to feel ok giving up on them?

    In your shoes, I might consider getting a second opinion and maybe also finding a social worker with experience/knowledge with breast cancer patients to sit with you and talk it all through and work through it together.

  • Jewelweed
    Jewelweed Member Posts: 46
    edited October 2021
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    Wow, thank you so much for your thoughtful reply!

    A little about me: I'm 57, very healthy and fit except for this, and I'm aiming for a long and healthy life if I can have it. I really don't want to swap out breast cancer for a new set of ailments and disabilities, so naturally I am nervous. I can't imagine going through two years of debilitating side effects-- I really feel I am in my prime, I just started up on a new and longed for career, and these years are precious to me.

    My cancer is stage 1a, 6mm, just had the lumpectomy, ER+ PR+ HER2-, very clean margins, and no sign of anything in my lymph nodes. Haven't gotten my oncotype yet.

    My radiologist presented this as my choice-- radiation will slightly reduce my odds of recurrence, but it is valid to ask if it's worth it. I am apparently an ideal candidate for AI. So do I want to be cautious and take everything I can get? Or should I plunge ahead into AI?

    I'm leaning toward radiation-- it would be a low dose for three weeks.

    Thank you again for your detailed reply!

  • juju-mar
    juju-mar Member Posts: 200
    edited October 2021
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    jewelweed,

    I was on the fence about radiation as well, even though RO, MO all strongly recommended it. My cancer was found post menopause, so I have already felt hot flashes, etc. I pushed to start the AI right after chemo was done and before mastectomy. MO said fine. Everyone has different reactions. I am 55 and healthy otherwise. My decision was based on wanting to throw everything at the cancer to decrease my odds of recurrence. I did 6 weeks of radiation, finished July 30. Just had my first abbreviated MRI and am cancer free. Good luck with whatever you decide to do!

    Julie

    Jujuscancerjourney.Wordpress.com

  • pupmom
    pupmom Member Posts: 1,032
    edited October 2021
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    Jewelweed, radiation was the easiest of all the treatment, for me. It's an inconvenience because you have to be there 5 days a week, but only for a very short time. You do get red and itchy toward the end, but there are excellent creams to help with this.

    Due to a low Oncotype score, I never had chemo.

    I've been on hormonals for almost 10 years (the end is coming this December, YAY). Haven't had too many problems. Tamoxifen definitely gave me massive hot flashes, but after a few months those subsided.

    You're an earlier stage than me, but if I were you I'd do both. Best wishes!

  • kathabus
    kathabus Member Posts: 45
    edited October 2021
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    Hi--Just wanted to reiterate....Salamandra explained this....it isn't one or the other. Once deals with local recurrence. One deals with distant recurrence. I did both. Good luck with your decision. Sometimes it isn't easy!

  • specialk
    specialk Member Posts: 9,237
    edited October 2021
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    I have never heard of docs offering radiation OR anti-hormonal therapy, like they are interchangeable. I believe that all modalities of breast cancer treatment offer a separate and distinct treatment advantage. Your clinical presentation determines which of these treatments is deemed necessary or advisable. My concern would be you opt to skip radiation and rely on an AI to handle things. AI drugs are not a 100% guarantee against recurrence, they reduce the incidence of local and distant recurrence but they do not eliminate it. I would absolutely do both therapies, knowing you can change anti-hormonal meds, or discontinue them if side effects are too much, but you can't add rads back in late in the game. Wishing you the best - I know none of us really want to do any of this, right?

  • Jewelweed
    Jewelweed Member Posts: 46
    edited October 2021
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    Just to clarify, the choice is to do both, or skip radiation and scoot on to AI.

    Thank you for all of your thoughts!

    I think I'm going to do radiation. It's only three weeks. I can take a little sunburn.

  • cowgirl13
    cowgirl13 Member Posts: 782
    edited October 2021
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    Jewel, I did the 3 week radiation and it was a piece of cake. Didn't burn or anything and I slathered on aquaphor every chance I got, including right after the zaps when I was changing back to my clothes.

  • salamandra
    salamandra Member Posts: 745
    edited October 2021
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    I'm not sure what it means that you are an excellent candidate for AI - as far as I know, anyone with estrogen positive cancer is considered a candidate for AI (barring certain comordbidities/allergies, I suppose).

    I wonder if the doctor is being optimistic based on your small tumor size. But I have not heard of skipping radiation as standard of care for any woman under 70.

    The thing with local recurrence - IF you catch it early, then it's most likely not fatal. But you do have to go through this whole thing of suspicious mammogram/biopsy, surgery, etc, all over again. That may not sound so bad while you're in the middle of it, but I can say that now that I'm out of it, the thought of going through that emotional roller coaster again is not welcome. Plus, with every new local recurrence, there's another chance that it has already spread before being caught - even if it's small. Even if it's 6mm or less - which is why you're being recommended AI - just in case the cancer *has* already spread out of the breast. So radiation does have an indirect role in preventing distant recurrence and increasing life expectancy as well. Because not all women are able to catch and treat recurrences before they spread - some instances spread before they are even detectable.

    Are you in a different country that might have different guidelines? Is it related to covid medical facility/personnel shortages? Can you see a second opinion radiation oncologist? Maybe I'm paranoid but I'd want a much clearer understanding of where he's coming from before proceeding with someone who suggested you could skip radiation all together.

  • Jewelweed
    Jewelweed Member Posts: 46
    edited October 2021
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    The percentage attached to my ER and PR + stats was 99%. My oncologist (Beth Israel, Boston) said that was a very high percentage-- usually it's lower. She then said "you really are an excellent candidate for AI." It was an ordinary comment.

    We then talked about various studies that have shown that older women do not necessarily gain an awful lot from radiation. I forget how she broke down the percentages, but it was small. I am a few years younger than then women in the study, and we talked about that as well. Other factors-- my margins are excellent and they have found no sign of spreading. She suggested going straight to AI was a possibility, but that it was ultimately my choice. We are going to talk more this week. It was all pretty reasonable.

    I've already decided to go ahead with radiation-- it's only three weeks and a very low dose, and as I understand it, that's pretty lightweight.

    Here is a study I found on the web: https://www.gotoper.com/publications/ajho/2016/2016may/omitting-radiation-in-older-breast-cancer-patients I'm younger than this demographic, but it sounds like they are studying this option for younger patients as well

  • harley07
    harley07 Member Posts: 316
    edited October 2021
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    @Jewelweed - there does seem to be a significant shift regarding the need for radiation after lumpectomy for early stage ER/PR+ BC. I am older than you and was diagnosed last year at 63 yo with stage 1 with ER of 100% and PR of 95%. My team recommended 5 sessions of accelerated partial breast radiation. My BS commented that if I had been a few years older radiation could have been skipped. However you are 7 years younger than I so I'm happy. to hear you plan to go with radiation. Better safe than sorry. Keep us updated.

  • Jewelweed
    Jewelweed Member Posts: 46
    edited October 2021
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    I've noticed that radiation sessions are getting shorter! I was relieved to hear them talk about only three weeks, and there seem to be so ma y other options. And yeah, I agree I am likely too young to pass by this. I just don't want to hedge my bets.

    Thanks!

  • farmgirl888
    farmgirl888 Member Posts: 14
    edited October 2021
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    Look into the five day accelerated radiation. They should offer that somewhere in Boston. For us working gals, it really is a consideration. I was going to go out of town to have that done until I discovered IORT which is one dose of radiation done during the surgery....once and done. I travelled out of town for that, UCSF, surgery Monday, flew home Wednesday....radiation was completed. IORT is only for early stage small tumors. I was very fortunate to speak with a few ladies on this board that had IORT and were very satisfied. I was also lucky to be a good candidate for it.

    I spoke with a nurse practitioner the other day about it, and she was SO excited but then said out loud, "Oh but that would take business away from my surgeon". FOLKS remember healthcare is a business, look into all options even if your provider does not offer them. Get second, and third opinions....

  • marinochka
    marinochka Member Posts: 82
    edited October 2021
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    I had DCIS, and the first radiologist which i saw said that it is not a good idea to skip both, but he thinks I can do one of 2: radiation or AI. I went for a second opinion, and was suggested 1 week of radiation. You get full amount of radiation for this period of time, but not the whole breast but area of your cancer and around.

    I decided to do that. And now I am taking AI as well.

    It is still to see if I made a correct decision, I will have mamo next week (2 years after diagnosis). Of course very anxious already.