Did I make wrong decision re IORT?

LWA

Hi,

My lumpectomy is scheduled for TOMORROW and I'm now wondering if I made the right decision; I am planning to have intraoperative radiation during the surgery. I just read a thing in the New York Times from two weeks ago (I searched NYT for "breast cancer") that says there is double the risk of recurrence with brachytherapy, as opposed to conventional radiation, which makes me think that even going beyond brachytherapy, to IORT, might not be a wise idea?

I'm a little panicked now because there are only a few business hours left today to decide whether to go forward or not. I guess the question is whether  IORT is just as effective long-term as conventional radiation, and maybe that just can't be known, because it's too new.

I've left a message for my surgeon, and also had my RO paged; I just spoke to my ob/gyn and of course she has no idea what to do; this isn't her area of expertise. Would I be dumb to go ahead with IORT?

I was hoping to do lumpectomy this year because my insurance is changing on 1/1 and it will cost a whole lot more then, but maybe I just need to delay surgery and think this over?

Thanks,
Linda

Cowgirl13

Linda, only you can decide what is right for you.  If it was me, I would not go with the IORT and just have regular radiation.  I qualified for a radiation protocol was was for 5 days only and you had radiation twice a day.  I did not choose to do it this way because i was HER2 and there were no studies that were broken down by the HER2.  So I only had to do 19 radiation treatments which was very doable.  My radiologist was Mark Rounsaville at CPMC.  I really liked him.

as I said, only you can decide this and good luck on your decision-making process. 

flash

 I wouldn't second guess your decision.  If there's one thing I've learned on this board.  Never look back, just look forward.

good luck 

Jelson

I agree with Flash.  and IORT and brachytherapy are not the same thing as you know. If not apples and oranges, then clementines and mineolas.
The persons to whom you should look for reassurance are your surgeon and radiology oncologist. Otherwise - full steam ahead and I am sure all will go well tomorrow and you will be feeling fine for the holildays.

Julie E

Rockym

When I first read about brachytherapy having a higher chance of recurrence, I thought to myself that I was glad I didn't have that done.  At first my BS and RO thought that brachytherapy was going to be the plan until I ended up having node involvement.  If you haven't had surgery yet, then your pathology is not final.  So often, things change once they get in there.

I know that if there was any question in my mind, I would go with the tried and true. I would never want to be looking back wondering if I did the shorter easier route at the risk of a higher recurrence since that knowledge is available now.  As cowgirl said, only you can make those decisions and they are numerous and difficult.

If this is going to bother you, tell your BS you've changed your mind.  Do not sign the consent for that part of the procedure.  That is what I did when I didn't want a complete lymph node dissection.  I was fine withe the SN, but knew if it was positive I would be stuck with chemo anyway.  It didn't make sense to me to risk LE.  I feel fortunate that when I told my BS what I found in my research, he respected my wishes and crossed that section off the consent form.  Good luck tomorrow and with everything.

cycle-path

LWA, there are no extremely long term statistics on IORT, but please understand that it is not the same as brachytherapy for a number of reasons. The most important of those reasons is this: tissue that is under surgical manipulation has a rich vascularization, which makes it more sensitive to the action of the radiation. Brachytherapy doesn't have that same benefit. 

Another important difference is that with IORT, the radiation is delivered to the cavity before any stray tumor cells have a chance to get out and spread.

As Jelson says above, comparing IORT to brachytheraphy is an apples to oranges comparison. Of course the decision is yours, but IMO you won't regret it. My surgery with IORT was 11 months ago and I'm still thankful I was able to have it. 

LWA

OK, thanks, everyone. Thanks for pointing out that, indeed, brachytherapy is a different animal from IORT. (I was thinking "The new-fangled thing and the even newer-fangled thing," which might not be the most constructive way to approach the matter. :-)

My RO is not around today, but I spoke to the on-call doctor in his office, who pointed out that if I'm worried about skipping the whole-breast radiation, I can always have some external radiation after the surgery with the IORT. (And I guess some say it's all to the good not to radiate the whole breast, depending on the situation, to avoid a chance of damage to heart or lungs.)

Vicks1960

LWA

I finished the Contura Balloon Brachytherapy a month ago.  So far so good.  There was a rebutal published a few days after the first article that came out of the SanAntonio.  My RO was involved in the original study/development of the Brachytherapy.  

I am still healing from all the mutilations the breast had with 3 surgeries, 10 rad treatments, then a drain.  It was very uncomfortable for a while but is much better now.

Good luck, I will include you in my prayers that you will be guided in the treatment that is appropriate for you.....

Vickie

cycle-path

"some say it's all to the good not to radiate the whole breast, depending on the situation, to avoid a chance of damage to heart or lungs"

This was my philosophy. My pre-surgical diagnosis was the same as yours. My understanding is that if I get a recurrence it's most likely to be DCIS again rather than invasive cancer, and I just couldn't see subjecting myself to the risks of WBI in order to lower my risk of another DCIS. And you know, it's not just possible damage to heart and lungs -- there are also women who get Shingles, squamous cell carcinomas, broken ribs, and few other nasty side effects. I'm so glad I was able to avoid all that!

I know you're in surgery today but I hope you come back and tell us all how it went! 

danesgrammy

I did not have IORT but instead had Mammosite.  I too read the articles that would cause concern but in the small study there was a 2% higher chance on reoccurence in the same breast...I'll take that small chance for less radiation and the ablility to keep on working while having the treaments.  Good luck today!

LWA

Hey, Vickie--can you explain what was rebutted? Are you saying someone says it's not actually true there is double the chance of mastectomy with the brachytherapy as opposed to conventional radiation? Thank you for writing and thanks to all!

I am back home and feel great, I must say, particularly as compared to the hysterectomy I had on 10/27/11, which, at least in terms of the surgery itself, was much more of an ordeal. Of course, must see what the pathology report says.

I spent yesterday freaking out about the IORT and, belatedly, called my RO this morning, the day of surgery, to see how many years the medical center has been doing IORT. The answer: four months! And how many DCIS patients they have used it on: 10! Well, now 11! :-)

(I actually asked him a bunch of questions when I met with him last Friday, but somehow omitted to ask these two very important ones.)

Nonetheless, I'm comfortable with my decision.

My RO is lovely and said I could change my mind about the IORT right up to the moment they put me under, and he also said I can come in after a couple of weeks and we can discuss doing three weeks of external radiation in addition (no need for the boost, because I had it today) if that would put my mind more at ease.

Meanwhile, my surgeon says why the heck would anyone have external radiation after IORT--part of the point is to avoid the external radiation. But as we know, the recurrence risks are not identical, and IORT/brachytherapy don't treat the whole breast, which might be a plus for some and a minus for others.

cycle-path

Here's an article about the doctors rebutting the findings of the brachytherapy study. It sounds to me as though the study was quite poorly designed. The main points in the article were:

1. The study is flawed in that:

a) The data did not report cancer-recurrence rates.

b) The study states that mastectomy rates equate to recurrence rates, which is not true.

c) The reported complication rates are unrealistically high and differ dramatically from better-done studies in scientific literature.

2. Patients now have access to newer and better forms of APBI that have been developed since the Medicare data was created.

The MDA study was based on Medicare billing claims for more than 130,000 patients over the age of 66 who were diagnosed with early-stage breast cancer between 2000 and 2007 and received a lumpectomy and radiation.

Researchers observed an increase of 1.8 percent in the rate of mastectomies among women who received breast brachytherapy. The older, "balloon" form of brachytherapy covered by the data was also associated with somewhat higher toxicity and complication rates.

"Among several shortcomings of the San Antonio study data," said Dr. Kuske, is the fact that it covers "an antiquated balloon catheter with a single channel. Since that time, technology has dramatically improved to encompass the use of newer, multichannel applicators. The side effects and toxicity seen with these modern technological advances are far less than the results presented in the study." 

The three major medical societies involved in the research and use of APBI have also issued statements of concern about the study conclusions. 

LWA

Thank you very much, cycle-path! You are a great resource when it comes to IORT.

Speaking of which, I think I just felt those 2000 rads kick in, the day after surgery and IORT--wow. Suddenly feel very strange and headachy, which I pretty much expected, though I felt so great yesterday evening, I was thinking I might get off lightly. At my initial visit with my RO, I asked, "Is this going to be like six weeks' worth of external radiation side effects all at once," and he said, "Yes, but it will be about half that."

I do also recall reading that the effects would start at such-and-such level and then get stronger over however many days.

--Linda

kira1234

LWA I also had the Contura balloon radiation treatment. My Dr. wanted to do  what you had done, but the clinical trial is on IDC. Your tiredness today is not unusual. Remember you body went through surgery and radiation in 1 day. Our bodies still need time to rest after things like this. Take the time your body needs to recoup.

cycle-path

LWA: two days after IORT I was feeling fine (I thought) and went on the usual one-hour dog walk with my husband and our "bronco." I couldn't make it home and had to sit down and wait while my husband went home to get the car! Until then I hadn't noticed any fatigue, but being unable to walk home made an impression on me.

Since it's been almost a year I don't remember exactly how it all went with the fatigue, but my vague recollection is that I was ok as long as I stayed pretty sedentary and kept off my feet as much as possible. I was back to normal after about 3 1/2 weeks. 

Vicks1960

LWA:

Here is a link to the article I mentioned above..

http://www.nytimes.com/2011/12/07/health/research/study-questions-brachytherapy-a-breast-cancer-radiation-treatment.html

LWA

Thank you, kira1234, cycle-path and Vickie.

Lisa75

Hi, I was recently diagnosed with DCIS and considering IORT. I'm talking to a surgeon tomorrow morning. I was wondering the recovery time, and time needed off work?. If I can I'd like to take a week vacation to recouperate...not sure if they would approve anything beyond that.

cycle-path

Lisa, what kind of work do you do? I think the answer depends on whether there's a physical component to your work. 

I'll assume, though, that you have a desk job with no physical component. In my personal experience, the thing that requires the most recovery time is the Sentinel Node Biopsy. There's some discomfort involved with that, for a while, and the use of that arm is somewhat limited for a few weeks. 

I didn't find the lumpectomy itself to be particularly problematic, certainly less so than the SNB. As far as the IORT radiation, it does cause some fatigue for 3 1/2 or 4 weeks. You might want to try to leave work early for a few weeks if you can. If you can't, plan to take it VERY easy when you get home in the evening. Let someone else do the grocery shopping, meal preparation, etc.

I don't work, but I believe I could have worked soon after my lumpectomy/SNB/IORT. But I know I would have been very wiped out when I came home and would have wanted someone to bring me dinner so I could eat and go straight to bed. 

LWA

Hi, Lisa75--

My lumpectomy and IORT were last Tuesday (12/20). The surgery itself has caused almost no pain whatsoever if the incision isn't disturbed. I've taken four Tylenol total, and don't think I even needed those. The incision site gets itchy fairly often, and if it gets bumped in any way (generally by me when I'm blowing my nose), the pain is excruciating but brief.

I felt splendid when I left the hospital on surgery day, but the next day, had several hours of feeling very strange and awful (woozy, dizzy, fatigued, alternating hot and cold). However, the next day I felt fine again and that has been the case every day since then.

I've been drinking eight glasses of water per day, not pushing myself, and have had two massages with people who specialize in moving lymph and/or clearing the body of anesthesia, which were both nice.

cycle-path's advice sounds sensible. I think you may very well find that a week is plenty. I'm planning to go back to work tomorrow (though I do have the option to work from home, which I might do not so much because of the lumpectomy and IORT but because the week between holidays can be awfully slow).

Oh, by the way, I wish my surgeon had told me to go get a sports bra or two before surgery, because I have totally needed them and ended up paying Amazon a small fortune for one-day delivery of two front-zip sports bras.

After surgery, my breast looked extremely strange--weird shape, nipple flattened--but since I'm not an underwear model, I didn't really care. Nonetheless, I was pleased when I saw yesterday that my breast looked pretty much like the other one again; it must have been post-op swelling, in part.

Keep us posted, Lisa75. I hope your meeting with the surgeon goes well.

Linda

LWA

Uh, now that I've been to the grocery store (I get there by bicycle, hauling my bags home in panniers attached to a rack on the bike), I definitely second cycle-path's advice about taking it easy. I was ready to keel over by the time I was walking out of the store, and now must do the weekly cooking, as I live alone. (Well, with a cat, but I can't get him to do much. :-)

Linda

Lisa75

I do have a desk job. nothing physical at all thankfully..but I live on the 3rd flr of my apartments...so I guess I better hibernate during my time off...LOL
well, I met with the surgeon and he is hesitant on even doing rads until he has done the lumpectomy. So, I guess IORT is out. I asked about it and he wasn't a fan of IORT or brachytherapy. He did mention maybe a sentinal lobe and 1 lymph node....and about a week recovery. My MRI is not until Jan 4th so he would have more info (how much to cut, etc) at that time. Thanks for all the info.

cycle-path

If you're having only a lumpectomy and SNB, I'd suggest you save some of your vacation days for the time when you're having radiation. Toward the end of the radiation you might want to be able to take some days or half days off. 

Some women here have had lumpectomy and SNB on a Wednesday, Thursday, or even Friday and gone back to work on Monday.

Is there an elevator in your building?  If not, PLEASE advise your doctors of this. I didn't have whole breast radiation, so I'm only going on what I've been told, but based on that I suspect it will be extremely difficult to climb 3 flights during radiation -- even if you only have to do it once a day.

redsox

Lisa75,

As someone who had lumpectomy and whole breast radiation therapy (but no nodal surgery) I can tell you that you can expect to be tired in the latter part of radiation therapy and for a week or so after it ends, but you will be able to walk as long a distance as you do now and climb as many stairs as you do now and engage in your usual brand of exercise.  You will not be matching any personal bests and will have lower energy levels and less ambition than usual.  But normal activities can continue.  I worked all the way through radiation, leaving work an hour early to get to my post-5:00 PM treatment time.  After a long drive home I did not do much in the evenings but I was still awake and alert until the usual time.

I think that is pretty normal for those who have not had chemo.  For patients who had chemo and rads the tiredness is cumulative so they generally feel it more.

LWA

One of the surgeons I met with (I met with three, one who didn't mention IORT, and two others who did; the third one suggested it before I could even ask about it, but it's not for everyone, and not available everywhere) said she's had people go back to work the day after a lumpectomy alone, though it didn't sound like she exactly recommended that.

The consensus seemed to be that two or three days of recuperation would be good, so if one were able to have surgery on Thursday, maybe taking Thursday and Friday off work, resting over the weekend, and returning to work Monday might be a reasonable plan.

Linda

Lisa75

awesome. thanks. now I know what to brace myself for.

LWA

Good luck, Lisa75. Please keep us posted. By the way, I did end up working from home this week (lumpectomy and IORT was 12/20), but that was mainly because it was extremely slow at work; didn't want to sit in a cube twiddling my thumbs for eight hours. I could absolutely have gone to work this week.

I've continued to feel quite fine except for that one strange day after surgery, and I think the sensitivity of the site is abating (though I'm not planning to bump it to find out for sure :-).

However, in the past couple of days, one of my eyes has become very dry and itchy, which I suspect is a side effect of the radiation, so I wish I'd had some eye drops on hand; will acquire some next time I go out.