WBRads, IORT, what to choose?

I believe I'm the resident IORT advocate. I had it in January of this year.

There are not a lot of women here who've had IORT, but there are a good handful who've had Mammosite or one of the similar PBIs such as Contura or Savi. What I can tell you is this: I have not heard of anyone who's had IORT or PBI and said afterward, Oh, I wish I'd had WBI.

WBI has many potential side effects such as skin burning, heart and lung problems, shrinkage of the remaining breast tissue, texture changes in remaining skin and breast tissue, and shingles. Some are very common, such as skin burning, and some are much less common.

IORT and PBI have very few side effects. No burning, no texture changes or shrinkage, no shingles, etc. A somewhat common SE of PBI, as I understand it, is seroma. Seromas are pretty rare with IORT, though.

Whatever kind of radiation you get you will have some fatigue. I had fatigue for about 3 1/2 weeks after IORT. I think the fatigue timeline for PBI is pretty similar -- it might start and end a little later with PBI (the fatigue sets in pretty quickly with IORT).  

There are a lot of papers about the effectiveness of IORT versus WBI. Basically, the data shows that for the population for which IORT is intended (small, early cancers in older women) it's just as effective as WBI.

http://www.jayantvaidya.org/breast_cancer_surgeon/TARGIT_trial.html 

I fought like the dickens to be able to get IORT. In fact, the State of California had (due to bureaucratic incompetence) de-certified all the Intrabeam machines in the state and I was told I could not therefore get IORT. Well, very few people have told me "no" without having to take it back. I unleashed my full fury on the California Department of Health Services and within a couple of weeks they returned with their tails between their legs and re-certified the machines.

I don't understand why anyone who could qualify for IORT wouldn't do their darnedest to get it. And if you live in California, you have me to thank for its availability. 

I too had a lumpectomy for a 1 cm, grade 1, stage 1, left sided IDC tumor. My margins were very wide and all clear. In some cases, there is another option to radiation for those concerned about future radiation consequences... it's called refusal. It's not an option that's routinely offered under the treatment standards of care or that most patients even realize exists, but it's one that's reasonable in certain cases. That's what I did and it's been over 7 and a half years of smooth sailing so far.

Hi,

I was also just diagnosed with early stage IDC.  I was told about lumpectomy followed by mammosite rad.  However, it seemed that there are some real complications with mammosite.  I started to look into IORT and a clinical trial using Cyberknife. 

Does anyone know of any places doing IORT in the New York area?  Does anyone know about how the clinical trials are going with Cyberknife? 

Susanella

Monday I went in for my reexision
and I am out with having my Xoft. I am
the first patient under 40 to get this type of radiation. My boob is hurting, feels like it is on fire,
a little heavy, but other than that I feel like I’m getting back to “normal.” I’m trying to figure out how to wear a bra
for my classes this evening since clothing hurts. RO didn’t think I would have the 1 cm
clearance for the Xoft, but I ended up with 2 cm clearance. Love my OS for fighting
for me. My DH told me, “I’m glad you are
a scientist and read all those peer review journals and fought for treatment.” I figured there has to be better ways to treat
cancer.

My tumor size went now from 2.5
cm to 4 cm and my CA27.29 was slightly evaluated but I still fought for the
Xoft. I did get an incision to the outer
side of my left breast where they stuck the rod in to get to balloon. They used superglue to seal the incision on
that side and the inside (cleavage side) has internal stitches and glue. Main reason I didn’t want 35 days of radiation,
woman under 40 have 20% chance of getting a secondary cancer from radiation and
my tumor was over the center of my heart.
Researching peer review journals pays off, if you are not a scientist or
can handle reading those journals go to a college and have someone help you.

cycle-path
I had to fight too, because of my age (36).
My argument was well you are taking my ovaries so I will be menopausal anyway. My DH told the doctors, “how do you learn about new treatments in
women under 40 if you aren’t willing to try.” Like chicken and egg
problem.

hope2learn My RO did not need to follow up with external
beam. I got rads for 15 minutes in the balloon. I’m post day 2 from surgery and
boob feels warm, and hurts like mad but I’m not taking pain pills so it is manageable.