IORT (Intraoperative Radiation Therapy)

cycle-path · December 2010

Any board readers who have had IORT who would share their experiences? I know the IORT radiation dose is much smaller and I wonder if anyone who's had IORT has experienced any of the side effects of "regular" (ionizing) radiation such as shingles and fibrosis.

anghub · January 2011

I had IORT during surgery but I did followup (about 4 weeks after surgery) with an additional 5 weeks of external (regular) radiation as well. I believe the IORT was at least a half hour of my surgery time. I didn't experience shingles or fibrosis from either of the radiation treatments.

cycle-path · January 2011

Wow, anghub, that seems like a lot of rads for 1cm DCIS grade 2! What reason did the docs have for so much radiation?

I've now had IORT myself and am very pleased, though it was only this month. I suppose I might feel differently in the future.

anghub · January 2011

Although small it was 1.5cm. Stereotactic biopsy removed .5cm and surgery an additional 1cm.

My original treatment plan was lumpectomy followed by 6 weeks of radiation and then 5 years on Tamoxifen. I filled one prescription worth of Tamox back in Aug. but I never took it.

Regarding radiation, the surgeon suggested IORT as my "boost" radiation treatment which would cut off a week/week and a half of treatments since boost is usually done at the end of treatment.

My husband and I had read about trials they were doing where women were having only IORT so we talked about that with the surgeon and he said the trials were only for post menopausal women (at that time).

The surgeon I went with was actually my 2nd opinion. The 1st surgeon had the same treatment plan in place (but she made no mention of IORT) and was the one who gave me my initial DCIS diagnosis.

I waited a few weeks before getting a 2nd opinion and even then I left that surgeon's office thinking I was still not going to do anything about "it" (I was just going to ignore "it") It being my diagnosis.

cycle-path · January 2011

Yeah, at one point I briefly thought I would somehow transport myself back to a time when I didn't have breast cancer.

I have to go back to the medical oncologist soon but she told me she would probably not recommend Tamoxifen for me. I'm hoping I am now All Done. The big difference between you and me is that I am post-menopausal, and apparently when DCIS is found in a post-menopausal woman it's considered to be less aggressive.

kat888 · August 2013

Hi Cycle-path~

I am about to have IORT along with lumpectomy/breast reconstruction surgery, am post-menopausal and sort of debating if I should opt out of having that and simply wait for my Pathology Findings after surgery. I do not want radiation if at all possible.

I know you had your IORT done back in Jan 2011 and I was hoping you would give an update on the results. I would love to hear your feedback and from anyone else that had IORT. Hopefully there was no major side effects like lympedema or skin problems...or other tissue or organ damage?

Thank you and Blessings~ Kat888 (ADHs/DCIS, 5mm, Stage 0, Grade 2, ER+/PR+ focal necrosis)

cycle-path · August 2013

Hi kat! I haven't visited the boards much lately but I left this in my "favorite topics" so BCS emailed me when you posted.

It sounds to me that recommendations have changed since my diagnosis, since I wasn't given any options about radiation. I was told prior to the lumpectomy that I "had to" have it regardless of post-surgical pathology.

I would definitely do it again. Basically my outcome is that I have a small scar on one breast, which is now faded so it's barely visible. If I'd had WBI I might have had skin problems, hard tissue in the breast, and any number of other problems.

I'm due for my final post-surgical MRI but none of the tests so far have shown anything. My MO told me the Tamoxifen decision was up to me. I tried it for a few months and stopped.

If I were in your situation I'd do the IORT, because if they decide post-pathology that you need radiation, then you're probably stuck with WBI unless the doc wants to go back in and get better margins and can do the IORT with the second surgery.

I did indeed experience some post-IORT fatigue, but nothing terrible. I believe it lasted about 2 weeks.

Let me know if you have any additional questions.

Sueper1grl · September 2013

I am new on here, I am suppose to have a lumpectomy and IORT on Friday. My DCIS is the 2:00 position 100mm from nipple. Time ran out as far as finding a plastic surgeon. I just wanted to get this booked. I'm wondering how much shrinkage if any from the IORT and how long it took? also want to know if anyone did reconstruction? during or after lumpectomy? I am so scared I don't know if I should have gotten a PS surgeon and if it's to late after the lumpectomy. I hate to have to operate on the good breast if I don't have to. Sure a lift would be nice but it's all too much right now...

cycle-path · September 2013

You don't say how large the DCIS is believed to be. I think mine was about 1 cm. I had no shrinkage as a result of IORT. I had no reconstruction.

If you look really, really hard at my breasts you can see that one (the lumpectomy one) is a little smaller than the other, but the difference is negligible. My husband thinks I'm imagining it, that the difference is not visible at all.

I don't think the IORT should make much difference in the cosmetic result. IMO the main thing that will matter is how much tissue is removed.

Sueper1grl · September 2013

I believe my size is 2cm. The surgeon didn't tell me how much she will need to take out. I'm unclear still if she is going to shift the fat to fill in the lump since she is trained in oncoplastic surgery. She has me down for a lift on the other side but I'm waiting for her to call back so I can opt out, I was told to have a PS do the work. I'm sure it's too late to add a PS into the mix since my surgery is on Friday I'm really scared and uneasy about general anesthesia.....

anghub · September 2013

I didn't have shrinkage after IORT. The radiated breast is actually a little bigger than the other one.......but then again......I followed up with 5 additional weeks of radiation.

cycle-path · September 2013

I guess if it were me, and in an ideal world, I'd wait and have some PS later after I saw how the lumpectomy turned out. There will be some post-op swelling so you won't know at first what it will be like. I don't recall how long my swelling lasted, but my experience with other surgeries is that there are generally some residual effects for a year. Some of those residual effects may be quite small, but a year will almost certainly tell the tale.

Another advantage of waiting a year is that it takes a while to get used to a body change. I had some foot surgery a few years back that ended up shortening the great toe on one foot. At first I was pretty bothered by the difference but I got used to it and now I don't care at all.

Of course there's also the question of insurance. It might be that your insurance will pay now because it's a cancer-related event, but they may not pay in a year. That's another factor.

BTW, regarding breast size change as a result of radiation: I was told by a radiologist that, with whole breast radiation, large breasts generally get larger, small breasts generally get smaller, and medium-sized breasts usually stay the same. But that's WBI, and I don't know whether that "rule of thumb" holds true for IORT.

IORT (Intraoperative Radiation Therapy)

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