IORT Radiation

Kristina19

Has anyone had the Intraoperative Radiation therapy and if yes, what side effects did you experience?  I am considering this after lumpectomy but am scared of all radiation.  

chelseasanfran

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.  

chelseasanfran

Dear Kristina,

I made a posting on July 11, 2012 under this same Radiation discussion group, "Has anyone had Intraoperative Radiation. . ."

Also, feel free to contact me individually if you have any questions.

Chelsea 

Kristina19

HI Chelsea,

Thanks for sharing your experience with IORT.  I decided before seeing your posts to forgo the procedure.  there were too many unknowns for me the more I investigated it.  Also my insurarnce company would not cover the procedure so am now having a lumpectomy with SNB and some form of radiation after that.  I am hoping that I can have partial breast radiation but will have to wait to see the final path report.  I am so sorry that you have had such bad side effects from your surgery and IORT.

Kristina 

spottress

One month ago I had a lumpectomy and iort. I noticed in your Aug, 2012 post, the description of your experience from iort, was that "a huge portion of my breast will permanently feel like a crow bar in my breast". Has that changed since your post 16 months ago? In the last two weeks I have an area at the radiation site that started out as very firm tissue about the size of a quarter. It has more than doubled in size in two weeks, has gotten much harder in texture and continues to increase in size and density. Since yours was the first I have been able to find as a similar experience to mine, I am very interested if you still think the side effect is permanent. I would also like to know if many others have had similar experiences.

Polly

gypsyjo

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

Burton

I just went through IORT in March 2016.  I'm just seeing your post from 4 years ago.  Would you tell me what you actually did and what affects, if any, did you have.

Thank you!

Sue

suzysnowflake

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.

Poombatz

Also considering IORT insurance denial Florida Blue thru the ACA as it is experimental. MRI shows a possible le satellite lesion so how do they know if it spread to the nodes? I am 52 IDC strong ER/PR+HER2 - fit the criteria.

peppopat

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.

Anonymous

I had IORT in September 2015 at CUMC in NY. However, I had a different delivery system. I was enrolled in the Targit study which uses the Zeiss Intrabeam system. What I can tell you is that I was extremely happy with my choice and the result. No SE's other then a day or two of fatigue the following week. My insurance did pay for this. I'd be glad to answer any questions you may have (you can PM me).

Best of luck in the enrollment process!