anyone had bad radiation side effects?

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.

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!

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.