hard, painful breast 4 months post lx

reflect

My lx breast is very hard and painful in the general area of my very large lx. It seems to change at times (move, feel less hard, then harder again). I am 4 months out from surgery, 6-8 weeks out from radiation. I've requested an appointment with the surgeon on the patient portal but haven't heard anything. What could this be, is it "normal", and which of my docs should I see about it? Has anyone had the same experience? Any thoughts appreciated.

ChiSandy

You might have “radiation fibrosis”—thickening or hardening of the tissue (mine was over the seroma in the tumor cavity) aggravated by radiation. You should talk to your radiation oncologist. He or she might have you see a lymphedema specialist as well, to rule out lymphedema (and maybe for some physical therapy to break up the fibrosis and either prevent lymphedema or halt its progress).

MinusTwo

I agree with Sandy. Radiation causes permanent changes. The RO is the doc I'd call first. He/she should be able to give you a referral to a trained LE physical therapist.

reflect

Thank you Sandy and MinusTwo,

I have an LE therapist but haven't seen him since rads ended, and I'm not keen on my RO. Actually, I never made my follow up appointment. Could I skip the RO and go direct to the LE? I am seeing my MO in a week (was to have been 2 weeks ago but I was cancelled b/c she was sick. I was planning to ask her about it.) Now I look like a flake, but I'm not, really. I travelled many miles this past year for all these appointments and I just couldn't stand to see that RO again. Nothing was ever caused by rads, and nothing could be done to prevent the painful SEs I had, according to them. Now I know that's not true.

Hopeful82014

It sounds like radiation fibrosis to me, too. My RO gave me the referral to a PT who is a LE educator as well and we spent nearly a year resolving most of it. Adding Trental plus Vit E helped a great deal.

Since you don't like your RO do talk to your MO, BS or nurse navigator about a referral. The sooner you get an appt. The sooner you'll start feeling better!

MinusTwo

If you can get one of your other docs to agree to refer to a trained LE PT, go for it. That PT will probably understand radiation fibrosis too. In the mean time, here's a great site created by many women involved with BCO. Don't delay making these calls.

http://www.stepup-speakout.org/

reflect

Thank you all. I have a previously scheduled appointment with MO next Friday and I will discuss it with her. I did call RO's office and they said he could squeeze me in between appointments, but said" we see this is an ongoing complaint"--which it isn't. I had had swelling from rads but it went away and now I have the hardness also and pain. I was a teensy bit offended (I do understand that this is their lingo, but it sounded like I was a big complainer and they really thought I could wait.) So I said, yup I'll see the MO next week thanks so much. I feel my RO and his team were the least communicative of all my docs, the most likely to dismiss my worries or SEs, and to deny that their treatment caused anything. I would certainly have appreciated knowing about Mepitel before hand, but when I asked they didn't know what I was talking about. It has a 99% prevention rate for moist desquamanation! (sp?)

Anyway. On ward.

reflect

Update 2 months on. MO said to do LE tx for my arm but that my breast was too soon to work on. Started LE tx--arm was very uncomfortable--and the arm started to feel better but my breast rapidly got worse about 2 weeks ago. Swollen, hard, red and painful when I moved. My LE said whoa and called my MO who sent me to the ER. That doc thought cellulitis or possibly IBC (He did not say those words, just said we hope it's cellulitis), gave me Keflex and said to see MO asap. Saw her next day (yesterday) and she sent me for ultrasound right away and volia, a large pocket of what turned out to be "old blood". (sent for culture, no results yet). My breast is actually deflated. Anyway, it feels better but not great yet, and I'll continue the Keflex. Guess this was the problem all along. Wish I'd had the ultrasound earlier!

Thanks for your support.