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anyone had bad radiation side effects?

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hi.....wondering if anyone has had bad side effects from radiation. i will be needing it next month, and want to know what to expect. I'm nervous about it.

Also, if you were given the choice between lumpectomy w/radiation....or mastectomy (without radiation)....which would you guys choose? Thanks!

Comments

  • alicebastable
    alicebastable Member Posts: 1,939
    edited July 2022
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    Remember, a lot of people who had no side effects, or very mild ones, don't post on this site anymore. But, there are many on this site who also had no/mild side effects. I've seen some existing threads that talk about bad side effects, but I don't know how active it is. For your other question, most people who respond have had a lumpectomy and rads because of the thread title, so you won't get sensible statistics.

  • quietgirl
    quietgirl Member Posts: 165
    edited July 2022
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    I found the pinned post https://community.breastcancer.org/forum/70/topics/783321?page=62#post_5747868 a great read to understand more how the skin reacts during radiation. I think that one of the hardest parts is to because you don’t see skin damage right away (because it’s happening to the lower layers first not the outer layers) people can get a false sense of thinking they won’t have any troublesome itching or peeling but it does gradually show itself. For some it is worse than others but your radiation team will probably give you suggestions and support to get you thru. Other people report fatigue which again is going to vary as well.

  • threetree
    threetree Member Posts: 1,269
    edited July 2022
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    Hi Jenna2500. I can't speak to the choice between the lumpectomy or mastectomy, as I had a "no choice" mastectomy with radiation, but I can speak to the radiation. Also I had proton radiation, not the standard photon, but my understanding is that the side effects are pretty much the same for both methods. I only ever got a "mild burn" (it's not really a "burn" I know) on part of my skin - the part on your upper chest that is often exposed to the sun over the years, so oftentimes has already suffered some damage.

    Additionally, I read up ahead of time and learned that turmeric (it's got to be the kind that has black pepper or "piperine" added to it - I used Oregon Wild Harvest) can help with inflammation. Also I read that flaxseed (I got Bob's Red Mill ground meal) can prevent a lot of damage that can be caused by radiation (fibrosis, especially). Unfortunately, that was a while ago, so I have no citations or references for those turmeric and flaxseed recommendations. I also used a calendula lotion immediately after the radiation and again at night before bed, so twice a day. The one I got was from Amazon and it was called, MJ's Herbal Calendula Salve. I got this one because it had far fewer additives than most:

    https://www.amazon.com/MJs-Herbals-Calendula-Salve...=sr_1_3_sspa?crid=2HGI7T5Z3UZJ3&keywords=calendula+cream&qid=1657201866&sprefix=calendu%2Caps%2C135&sr=8-3-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExNFVMQjdWMjRIS1lGJmVuY3J5cHRlZElkPUEwMzYzMDc1MVhDSjNRN1RMTjFCVSZlbmNyeXB0ZWRBZElkPUExMDEyOTkxMTgyTEg4OTRVMEtKViZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=

    Sorry, but I couldn't post the picture - tried several times with no luck - a site glitch?

    I finished my radiation around the end of November 2019. As I was told, I did get a little more sore and fatigued after that, before things got better. By mid December of that year the mild "burn" and the fatigue that I had developed (do watch for that, mine wasn't as bad as some others get), was much noticeably better, and then by Christmas and New Year's I was doing great and had the best time since my original diagnosis in the fall of 2018. Starting in January of 2020, however, I had to start taking the AI, Letrozole, and misery returned and has remained for the 2.5 years after that. I plug away with the Letrozole but it is a daily stuggle.

    Overall, I would say that radiation was not as bad as getting chemo. The worst parts about it are that it is daily for a long time, and some can have problems. Some of the other women I talked to while I was getting my radiation treatments got much more red than I did, and one did have to stop and take a break to let her skin heal for awhile. I'll never know for sure of course, but I can't help but think that the turmeric with piperine, the daily 2.5 TBSPs of flaxseed (not bad mixed in yogurt and cereal), along with the calendula cream helped me avoid any real bad reactions. To date, I have not gotten any of the bad side effects that can show up late from radiation, e.g. pneumonitis and/or fibrosis. I've also continued with the daily Turmeric and Flaxseed ever since for lots of other reasons beyond the radiation.

    I can only speak for myself of course, and I do wish you all the luck in the world. Just read all that you can - the help from the members of this discussion forum can be invaluable - and then digest it all and make the best decision you can for yourself. I've got my fingers crossed for you!

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Jenna - you have started several threads asking the same question about lumpectomy vs. mastectomy. I would suggest sticking to the thread on that specific topic (please do not take offense, it will just keep things in one place so others will hopefully respond to you).

    What I did before I started rads was look at previous months radiation threads. You will see what other members have experienced and find out what worked and didn't work for them.

    I had a an awful experience with it, but countless other members will tell you that it was not bad for them. One day I woke up and I was healing, literally from one day to the next there was such a drastic difference. You really don't know how you are going to react to it, but I hope that it goes very smooth for you.

    Miaderm (provide to me by one rads dr), Aquaphor an Calendula were my go to products. I would keep the Miaderm in the refrigerator so when I applied it the cream was cold and gave me some instant relief.

    Search "a rad tech weighs in on radiation burns" I can't post the link to it. It's a post from a radiation tech.

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited July 2022
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    I think you need to separate out short-term effects, like skin "burns" from possible long term effects. Also superficial effects from possible more serious late effects - lymphedema, heart, lung, etc.

    And the first question I would ask is whether radiation would be breast/chest wall only v. breast/chest wall plus nodes. There are three groups of nodes sometimes covered - the axilla (underarm, the ones they biopsy during surgery,) the supraclavicular (above your collarbone and into your neck) and the internal mammary nodes (basically behind your sternum.)

    All radiation can result in cosmetic issues. With lumpectomy the breast can become smaller and "harder." And with any radiation skin issues may occur - my skin still looks red in spots years later, despite laser treatments.

    But breast/chest wall only radiation has fewer long term effects than radiation that covers the nodes because of the larger radiation field in the latter. And most of the posters here who have more serious effects likely had nodal coverage. As a start, I would ask your radiation oncologist what his plan would be.