Side effects of breast radiation with implants??

I had a lumpectomy May 2015 and had 4 lymph nodes removed followed by 6 weeks of radiation . I have implants and not doing so well. I have been diagnosed with lymphodema and cording. I have had 10 weeks of lymphodema therapy and wear a compression bra and sleeve. My left breast is shrinking really bad and I look very lop sided. The shrinking is squeezing my implant and making it very tight and uncomfortable. I am in a lot of pain and can't sleep on that side at night. I am starting to wonder if radiation was the right thing to do and where do I goo from here

hi there I was dx 4/29/15 with IBC of my left breast with +lymph nodes but not other spread. I started chemo 5/11/15 and did that every 3 weeks for 6 treatments and then opted for double mastectomy. I had tissue expanders placed at that time with anticipation of permanent implants 3-6 months after the mastectomy. I was told I wouldn't have radiation due to complete response to chemo.. and the plastic surgeon asked about it several times because he said he'd opt for a DIEP flap reconstruction if I were to have to have radiation as its not a good idea to have radiation with the expanders or implants in.

So then the oncologist said she made a mistake and that I would have to have radiation. I freaked out because I had the tissue expanders in. I met with the radiation oncologist who assured me as long as they were filled prior to starting radiation all would be fine. So I had them filled to size and started radiation mid November 2015. My last was 12/24/15 on 12/24/15 I developed horrible rib pain. My radiated side shrunk up, was bright red, hurt like hell.

Over the course of six weeks I saw my radiation oncologist, regular oncologist, and general surgeon. No one seemed concerned and said it would calm down as the tissue healed. The general surgeon did do a punch biopsy and put me on antibiotics in case it was an infection but all tests came back normal. And the pain continued.

About 3 weeks ago I spiked a 103.5 fever and my skin broke open and oozed pus. I went to ER and my plastic surgeon was called in and he said it was a horrible infection and the tissue expander had to come out. I was gutted. While he was in there he said radiation just decimated he area. And the infection was one of the worst he had seen.

So now I have a tissue expander on the right which seems to be fine and am concave and scarred up on the left. It looks terrible. He said he can do the DIEP flap on the left in a year or so to even it out but in all honesty I may just get the right expander out and be flat. The thought of a horrible invasive surgery is daunting right now to me. But I am only 37 so I am also struggling with the idea of not having breasts.

So that's my implant/radiation horror story.

I hope you can get relief from the pain. Living with the constant pain for six weeks was bad enough I can't imagine longer. If affected me so badly and my babies couldn't possible process why I was how I was. The hardest part was having them want to play and not understanding why I wouldn't.

Like you, I probably would still have the radiation knowing what would happen because they all said with IBC it was a must. But I just wish my oncologist would have known that I had to have it regardless of chemo response so I could have avoided the last two months of hardship. Yes we are alive to complain but certainly earned the right to complain.

I had radiation with implants because my radiation was for a recurrence. My RO downplayed all side effects of radiation; told be I would get "a little sunburn." My PS had told me that it would affect the implant; that about 3 months post Rads, it would get tight and would get pulled higher. He was right.

I burned badly during radiation. It is now four months after radiation. A month ago, it started getting very tight and pulling up. It is not too noticeable yet with clothes on,but if it gets worse, it will be.

I am almost two years out post rads. I have been doing a quick daily massage of the radiated breast - after my morning shower I put on a bit of good natural moisturizer and do about 1O - 12 massaging movements that my PS showed me. The purpose I guess is to slightly move the implant in its pocket.
I don't feel more tightness on the radiated side, both sides feel the same. The radiated side looks slightly higher and slightly smaller. One might say it is a bit perkier than the other one. This is not noticeable when I am dressed.

I had radiation with an expander in and have been told that the radiation burst my expander and all the saline came out. I now have to have surgery again to remove the old expander and put a new one in and then have to wait 4 - 6 months after before I can get my implant. Take care and hang in there.

ugh so sorry for the unexpected surgery MJ. I can relate and it's a tough pill to swallow but I am happy to see you get to have another expander put in. Stupid radiation. I curse it at least ten times a day. And then beg it to do its intended job and save me from every going through this nightmare again.

I completed radiation 2 weeks ago. FlipFlop: WOW! That really scares me! Last night, it drained so much that it went through my cotton tee-shirt (what I wear as a bra these past two weeks!) then even soaked my bed sheets. Now....today...no drainage and actually looks better. Perhaps I just needed to get it all out???? I will keep a watchful eye on it. Thank you for the advice.

bjb01: Thank you for your kind words. You are so right about being on these boards. I have NO ONE in my personal life that can even relate. No one has been through this. And you are right about once the treatments are over, the side effects are far from over. I have had more trouble and pain since the radiation has been completed than I did during. The nurses just keep saying that it will get better. The medical professionals only seem to feed you a fraction of "what may happen" (or probably will). I think that if they lay it all on the table up front many people may not get the treatment.