IORT Radiation

Yes, and I have done a number of postings on my experience with a lumpectomy with IORT and its side effects.  Please check for my other postings, as my situation was complicated and IORT was the wrong procedure for me.  The side effects I have experienced include severe scarring leaving a dense bar of very hard rock like tissue underneath the entire length of the scar and a permanently retracted nipple.  I have severe denting like a cross carved into my breast above the lumpectomy scar due to both the IORT and the lumpectomy. I have been advised that the denting can be largely corrected with micro fat injections, done over the course of months, but a huge portion of my breast will permanently feel like a crow bar in my breast. My breast is at least 30 % smaller than the good breast, but this and other side effects I have experienced are from the lumpectomy and node dissection.

The important thing to know is that IORT is only appropriate for Stage 1 Breast Cancer with negative nodes. I wasn't properly staged preoperatively and shouldn't have had the procedure.  I actually should have had WBRT.  It took me 8 months post-operatively to get a informal, but definitive no regarding further radiation (WBRT) from the people who did the original IORT trials. Luckily, I didn't go along with two tumor boards (one affiliated with my breast surgeon, another with my medical oncologist) that recommended WBRT right after my surgery and my OncotypeDx testing.

Also, the problem with IORT is that it is a relatively new procedure and there are no outcomes data on recurrence and survival rates beyond five years and the data which are relevant are only for people who met the criteria for receiving it in the clinical trials.  

Polly, I am currently considering this procedure and would like to know how your experience turned out. Thanks!

My insurance has denied IORT coverage as experimental. It's CIGNA. Has anyone any experience with DENIALS?

It was labelled experimental and denied even after the doctor had a peer-to-peer review.

I have a consult next week with an IORT facility in Miami, I found them through clinical trials.gov

You won't need insurance as IORT is still a clinical trial procedure, if you go thru the site.

I tried out for this years ago but was turned down because my tumor was too close to the surface of the skin. Not the case, for me, this time.

Lots in conditions for being in the trial, unfortunately. So far, it seems like to good fit for me. this time. IU understand that you can been on the operating table and when it comes to sending the tumor to the lab, the slightest but of invasive will disqualify you. They will close you back up without doing the treatment.

https://clinicaltrials.gov/ct2/show/study/NCT01644669?term=IORT&recrs=a&cntry1=NA%3AUS&state1=NA%3AUS%3AFL&rank=1&show_locs=Y

I am looking to speak with members who have been through this treatment. I understand that it has a 100% patient satisfaction rating but I'd rather hear that personally from a patient rather than propaganda.