Radiation after lumpectomy -- data?

redsox

If you want a thorough summary and discussion of the literature, data, controversies, and various viewpoints about DCIS, you can go to the NIH Consensus Conference on DCIS that was held in September a year ago. The website has links to the abstracts of each speaker's presentation.  If you want to immerse yourself in this it also has video of the whole 3-day conference.  It is not very user-friendly but you can watch it all if you really want to see how much the doctors can all disagree. 

It is clear that interesting investigations are underway on risk factors and biomarkers to allow more individualized treatment but there is not yet clear evidence on which to set those standards.

The topic of the benefit of radiation therapy after lumpectomy is most specifically addressed in the last hour or so of day 1 when the speakers are Dr. Solin and Dr. Silverstein.

http://consensus.nih.gov/2009/dcis.htm

Watching it yields some surprises. Dr. Silverstein emphasizes margins much more than the Van Nuys Prognostic Index (VNPI) would indicate.  In the index 4 factors are equal (size, grade, age, margins) and each get 1, 2, or 3 points that are then summed up. The total is used to make recommendations about treatment.  That means a bad score on one factor can be balanced by good scores on the other factors.  In speaking he really emphasizes BIG margins and all his examples are women with large breasts with a large amount excised and reduction of the other breast for symmetry.  Someone asked if the techniques worked for women with smaller breasts and multi-centric lesions.  His answer was to the effect, "I'm not crazy!"  It was unclear if they could work for women with smaller breasts and a small lesion.  He broke out margins as a separate category for the higher VNPI scores and has also published papers emphasizing the importance of margins.  It seemed to me after watching that presentation that even the founder of the VNPI does not really think margins are one of 4 equal factors. 

Margins are very important if you want to consider skipping radiation.  Other factors such as size, grade, and age, are risk factors, along with numerous other factors that can override those.  The rationale for margins being most important is that with pure DCIS the risk of recurrence outside the breast is essentially 0 (unless it is not really all DCIS).  The area where the tumor was (the tumor bed) has the highest risk of recurrence.  The rest of the breast has some risk of recurrence but that risk decreases as you get farther away from the tumor bed. If you can achieve really wide margins you have eliminated the area at highest risk for recurrence.  That does leave you with some risk of recurrence in the rest of the breast but it may be quite low.  (This is also the rationale for partial breast irradiation techniques rather than whole breast irradiation.)  Achieving wide margins is not always possible. The bottom line -- if the surgeon can get really wide margins you may be able to skip radiation and have a modest recurrence risk. 

It was also interesting to note in these two presentations from the consensus conference that Dr. Silverstein was willing to accept a considerably higher risk of recurrence than Dr. Solin was.  Sometimes even if two doctors look at the same data their judgements will be different.  It is important to try to make sure that your doctor's view is consistent with your own. 

If two or more doctors make different recommendations the reasons may include:

1. they disagree on the diagnosis or interpretation of the pathology

2. they are considering a somewhat different set of factors or putting different degrees of importance on particular factors

3. they are willing to accept different levels of risk

It is important to try to get a clear understanding of the reasons behind the different recommendations -- again to be sure it is consistent with your own goals and risk tolerance. 

edited on 1/23/2011 to add the following later reference:

The monographs are now available in the October 2010 issue of JNCI Monographs entitled, "2009 National Institutes of Health State-of-the-Science Meeting on Ductal Carcinoma In Situ: Management and Diagnosis", providing more detailed information than the abstracts but much easier to access than the video.  The link is:

http://jncimono.oxfordjournals.org/content/current

Because it is the current issue of the journal on the website, this link will eventually become obsolete, but you can look for the October 2010 issue of JNCI monographs.

SJW1

Red Sox,

Well said!

However, the tough part is always how to apply this research knowledge to real patients in a clinical setting. Since DCIS is not homogeneous and not everyone has the same risk tolerance, managing it is an enormous challenge.

In regard to the Van Nuys Prognostic Index, your point about margins is well taken. Perhaps as Dr. Silverstein and Dr. Lagios continue to add new patient information to their data base, one way the VNPI point system might evolve to become even more accurate, will be by giving double weight to margin status.

Thanks for posting the NIH link. I listened to quite a few of the presentations last night and found them to be very interesting. Is there a way to fast forward to specific topics of interest, like Dr. Silverstein's presentation?I couldn't figure out how to do that.

Thanks again for all the info you have been sharing on this website recently.

Take care and be well,

Sandie

. 

redsox

Sandie,

The video is not very user friendly, one long video for each full day, but Dr. Silverstein is the last speaker of Day 1 which is about 7hr 30-40 minutes long.  You can push the time along at the bottom to skip to another part.  I think Dr. Solin starts at about 6 hr 30-40 minutes and Dr. Silverstein starts at around 7 hours.

MarieKelly

I watched it, starting with Solin, earlier this evening and look forward to seeing the entire 3 days when I have more spare time. I've always been very impressed with Silverstein and more so now after listening to him speak.  He's a breath of fresh air in the stuffy, set in their ways world of clincal research,  I visit Southern California at least yearly since family and friends are still there (daughter lives about 10 minutes from Hoag) and if I ever get a recurrence, I'm heading straight to him or those he's mentored. 

I loved his comment "My conflict is with everyone who wants to overtreat these patients". That's my conflict too - with anyone who wants to overtreat ME.!!!  And the comment about the standard radiotherapy cop-out being since they can't identify those who don't need it, let's just radiate everyone. How sad. But they CAN be identify them, at least to a reasonable degree, and Silverstein knows it . And after listening to just a little bit of that conference, I think the radiation oncologists know it too and that's why there's always been so much opposition from them. I read somewhere that 30% of their business comes from radiating breast cancer patients.

The oncoplastic surgical approach is the way to go and I pray it catches on like wild fire in the years to come..

Hindsfeet

Margins are very important if you want to consider skipping radiation. 

Perhaps, but my bc surgeon said that dcis can hop, or skip about the breast. My first lumpectomy I had a lumpectomy with wide margins. The next year the mammo showed more califications. The surgeon said the dcis was there the whole time...and that's when I learned that wide margins does not guarantee all the dcis was removed. This is why the doc's recommend rads. I chose not to do rads. If I have another recurrence, I'll do a mx with reconstrution. Initially, I didn't want to do rads because if I were to eventually have a mx, rads would had made the reconstruction more difficult...and financially at that time all I could afford was a simple lumpectomy.

redsox

Barry,

As you know personally even wide margins may not make it safe to skip radiation.  But only if I had truly wide margins would I even consider it.

MarieKelly,

Interesting that we all find different moments that resonate.  For me the most telling was in the Q & A when one woman asked Dr. Silverstein about the risk of surgery (especially such extensive surgery) spreading cancer cells. He blew her off by saying if he thought surgery spread cancer he would not be a surgeon.  But surgery can spread cancer cells.  I expected an answer that the risk was very small or that they used techniques to minimize the risk.  I did not hear anything along those lines in his answer. 

MarieKelly

redsox, In the original post on this thread you said "It seemed to me after watching the presentation that even the founder of the VNPI does not really think margins are one of 4 equal factors".

In that presentation, Silverstein stated why his NEWER version of the VNPI which predicts 12 year probability of local recurrence (based on 947 patients) was emphasizing margin widths. This newer VNPI subdivides and is more refined.  The reason he says margin widths are so very important in this newer version, is because margin width is the ONLY one among the VNPI factors that there is any control over.  You can't control the patients age, can't control the grade and can't control how large the area of DCIS is at diagnosis. You can however, control how wide the clear margin widths are and that's why his presentation was emphasizing margin width. 

You also said " The bottom line -- if the surgeon can get really wide margins you may be able to skip radiation and have a modest recurrence risk." 

Well, not necessarily according to Silverstein's presentation. Among all others, he's the one most resistant to using radiation.  Yet even he states you can't get a reasonable low LR risk probabilty when the VNPI index score is too high...no matter how wide the margins are ( I believe he said those with scores of 8's and 9's but I'd have to look again to be sure).  He said those with scores that high should definately be radiated after a lumpectomy even if the margins are greater than 10 mm.

And I couldn't agree with you more in saying  it is important for a patient to be sure that treatment plans being recommended are consistent with their own goals and risk tolerance. Just as Silverstein is accepting of a somewhat higher recurrence risk without radiation than most, so too are some patients once they actually have a better understanding of what that risk really means to them personally. 

redsox

MarieKelly wrote:

In that presentation, Silverstein stated why his NEWER version of the VNPI which predicts 12 year probability of local recurrence (based on 947 patients) was emphasizing margin widths.

 But it only breaks out margin width for certain categories at higher risk.  The point I was making is that margin width is important for all patients in any category.  That is the approach being used by most other investigators who are trying to identify DCIS patients who might have lumpectomy alone with a reasonable risk. 

You can however, control how wide the clear margin widths are...    He said those with scores that high should definately be radiated after a lumpectomy even if the margins are greater than 10 mm.

Surgeons have some control of margin width for some patients but often not much.  I see that you had IDC Stage 1b and not DCIS.  This is one area in which DCIS can be very difficult.  If you have a small, well defined IDC tumor and the surgeon can see it clearly on imaging, he or she may be able to get quite precise 1 cm. margins.  With DCIS the tumor is often much less clearly defined with conflicting indications from different imaging tests.  The surgeon is operating quite blindly with some guidance from imaging and experience.  Getting 1 cm margins all around without hacking off an excessive amount of the breast is often not feasible.  Many DCIS patients need re-excisions and often end up with margins that are good enough if they have radiation therapy but risky if they do not.   Even with 1 cm margins some patients should still have radiation therapy because of factors such as size, grade, age, and also other factors not included in the VNPI.

And I couldn't agree with you more in saying  it is important for a patient to be sure that treatment plans being recommended are consistent with their own goals and risk tolerance. Just as Silverstein is accepting of a somewhat higher recurrence risk without radiation than most, so too are some patients once they actually have a better understanding of what that risk really means to them personally.

We do agree that patients can and do choose different levels of risk.  Some will choose lumpectomy with no further treatment, some will choose lumpectomy + radiation + maybe tamoxifen, some will choose unilateral mastectomy, and still others will choose bilateral mastectomy (to reduce the risk very close to zero).  I support all of those choices as long as the patients investigate thoroughly, find doctors they are comfortable with, and understand the risks that they are accepting. 

I want to talk a little about the differences in the viewpoints of patients and oncologists. 

Each patient needs to find out enough about her individual clinical situation, the general probability of recurrence with various treatment options, and her own risk preferences.  Then she can make a decision of what is best for her in her situation.  After the treatment decisions are made, probabilities no longer matter.  Either she has a recurrence or not.  If so, it could be DCIS or IDC of varying stages.  Many patients with minimal treatment will be fine.  Some will not.  All that matters to you is you.

Oncologists (medical, radiation, etc.) look at the probabilities and know that some of their patients will wind up in each group in approximately the proportion of the probabilities.  For them it is hundreds of patients, not just one.  They worry about the patients who had a very favorable diagnosis and wound up with a much more serious diagnosis later and they don't want that to happen because they took the case too lightly.

You are certainly entitled to worry about overtreatment for yourself but I think it is just as legitimate for an oncologist to worry about undertreatment of patients who should have almost zero % chance of dying of the disease.. and to do so without having his or her motives maligned.

imbell

It's a whole lot of theory. The reality for me was DCIS Grade IIIb 5 cm tumour and 5/17 nodes. How that constituted DCIS I don't know. Had a lumpectomy but was prepared for mastectomy. The onc was happy but the rad doc said I didn't have clear margins and I needed a mastectomy for him to do rads. Did some chemo, had a bilateral mast and 25 rads. 18 months later had recurrence which was localized but has since spread. There is no such thing as being to aggressive when it comes to BC.

Cowgirl13

Well said, immarybell

deli

Dr Silverstein is my Doctor. I had .4cm dcis in right breast. I have large breast and Dr was able to get very good margins. Even though the cancer was grade 3 Dr Silverstein and Dr Waismann(oncologist) still agreed that radiation would probably have more risk than benefits in my case. Also, you can only have rads once in that area. I am so glad I went to these marvelous Dr's that treat women like individuals. Decisions are made case by case and you are not treated like a statistic. Other Dr.s told me radiaiton no matter what without even looking at my medical history. Dr. Silverstein and Dr. Waismann are the best and with his oncoplastic surgery Dr. Silverstein even made me look better than before I had my surgery.

Beesie

immarybell,

You said "How that constituted DCIS I don't know".  Here's what it sounds like to me.  It sounds as though you had DCIS and IDC (invasive cancer) together in one tumor.  That's actually very common.  About 80% - 90% of IDC forms from DCIS so most women who have IDC also have some DCIS.  But a diagnosis of "DCIS" is used only for those who have pure DCIS, which is breast cancer at it's very earliest stage.  A diagnosis of DCIS always will be Stage 0. Anyone who is higher than Stage 0 is not considered to be diagnosed with "DCIS"; their diagnosis will be IDC, even if the tumor includes more DCIS than IDC.  A diagnosis of DCIS means that the cancer is pre-invasive and as such, it cannot travel to the nodes.  Women diagnosed with DCIS do not get chemo because DCIS cannot move outside of the breast.  So it sounds as though you had some DCIS, but your diagnosis was not DCIS.  Certainly not if your stage when you were diagnosed was Stage IIIB (or anything more than Stage 0).

For women who are dealing with pure Stage 0 DCIS, there really is a dilemma about what the right treatment should be.  The problem with DCIS is that even when you are dealing just with Stage 0 pre-invasive disease, there can be a lot of difference between one diagnosis and another.  So from a medical standpoint (thinking about the treatment that most doctors would recommend for a particular condition), the exact same treatment might be considered to be overly aggressive for one DCIS diagnosis and not aggressive enough for another DCIS diagnosis. 

Whatever our diagnosis, Stage 0 DCIS, Stage I DCIS with a microinvasion (my diagnosis), or anything higher, we each need to make the treatment decisions that are best for us.  For some of us, there are treatments that may be unnecessary and therefore are too aggressive.  Saying that there is no such thing as being too aggressive when it comes to BC treatment doesn't recognize the reality that there are a multitude of different diagnoses and that each of us has a different risk tolerance level and may consider different things to be important (avoiding radiation vs. preserving one's breast, for example).  To me, what's important is that each woman select the treatment plan that is right for her.  Whether it would be considered overly aggressive or not aggressive enough by another patient doesn't matter one little bit. 

redsox

bump for the newbies

gymnut

hello all,

i dk what "bump for the newbies" means but i hope i'm not too late for this thread. i've seen some great info on here& i definitely qualify as a newbie.

i'm in the process of deciding, and right now seem to be leaning towards re-excision & probably rads though maybe no drugs.  i'm supposed to be meeting for follow-up w/ bs tomorrow & have lots of q's & also lots more for rad onc.  may get to talk to her tomorrow, too, but not sure.

if anyone has any suggestions for follow-up q's for either, that would be great.  for starters, i need bs to review path report w/ me again.  there are definitely things on there i don't completely understand & info. i've seen a lot of you post which i dk about my own diagnosis.  some of these factors seem to impact treatment as well as possible recurrence rates so i definitely want the info.

does anyone have any good resources to suggest? i believe someone posted about a particular form or posiiton for radiation designed to protect heart.  did i read that correctly? sould anyone say more about that or point me in a good direction? my dcis is in left breast so i do have concerns about heart & lungs, among other things like different kinds of cancer (no thank you!).

does anyone have any info. on whether women who are lean &/or small breasted are at higher risk for heart &/or lung damage? any other kinds of side effects? any info. sources to recommend? if any of you did do rads, what were your experiences? for those who may have opted out?

thank you again everyone.  good luck in whatever place you are in your journey & take care.

redsox

I guess you know that "newbie" is just a term for someone new to this website and to figuring out breast cancer.  "Bump" means to post a message at the end of the thread that does not really say anything, but the new post causes the thread to pop up to the top of the list.  I must have read someone's question or comment and said that I would bump this thread for them.

I had excisional biopsy. lumpectomy, radiation therapy (whole breast), and tamoxifen.  I got through all of them quite well.  The worst was the preceding core needle biopsy that did not even find the cancer. 

There are different positions possible for radiation and it really depends on your anatomy and the location of the tumor bed (where the tumor was before it was removed).  The things you are asking about are all good questions for the doctors you will be seeing. 

gymnut

thanks red sox.  it's always good to hear someone has done well w/ whatevr course of treatment they've chosen.

hope my dr. appt is still on for tomorrow, which i think it will be & glad it wasn't today b/c i probably wouldn't have been able to get there b/c of snow.

i guess i'll see what answers i get & go from there.

take care.

CTMOM1234

gymnut, I believe I responded to another one of your threads and mentioned that my dcis was in the left breast and received my rad zaps in the prone position. The concern with rads to the left side is how to shield the heart and lung -- unlike the right side where it is just the lung. It is my understanding that the technology has really improved to minimize impact, but I wanted to do everything I could. Standard rad treatments are given to the person while on his/her back, so the breast is flat/closer to the body. In the prone position, one is lying face down, with the breast gravitationally away from the body (assuming sufficient size) using a cutaway piece. I had all 25 full-breast zaps in the prone position, but my 5 boosts to the scar site were given in the regular position.

gymnut

thanks ctmom1234,

yes, i think you might have responded to me somewhere, too.  thanks for the info & input.

as a result of what i leasrned from you & others on the site, i asked about different methods of radiation & found that at least where i'm having my re-excision they don't do the accelerated partial breat irradiation, but the rad onc. i met with is able to do rad in prone position & trained that way.  she does recommend it for pts for whose anatomy it makes sense.  i guess not everyone's heart & lungs are in exaclty same place?

did you have something covering the area around heart/lungs, i.e. not breasts? did something cover everything except the left breast?  i realize i still have more unanswered q's but while i now have surgery scheduled for next tues. ( & am freaking out a bit all of a sudden) i can't start radiation for a month after so still have more time for that.

thanks again & take care.

CTMOM1234

gymnut - I'm glad your rad.onc. is trained/able to have you do your rads in the prone position. When I began rads, I thought for sure there would be some sort of "lead protective covering" like you get for x-rays when in the dentist's chair, but there is not. It is all about the angles and you will find that much care is spent lining you up before zaps begin. Being prone, you do have much more privacy than if you were on your back. The rads board here is wonderful, I joined the March '10 thread and it was nice to go through this with others -- I also read the posts from the Feb. thread so I'd be prepared, and I suggest you both join the month you'll begin and read earlier months' posts.

 Good luck with the upcoming surgery.

gymnut

thanks, ctmom,

i've kind of been freaking out a bit, actually.  i guess it's become real now & while part of me knows i'll be okay, part of me is terrified & feels like a four-year-old who wants her mommy or something (and i'm someone used to & more comfortable w/ helping than asking for help, which is something i've been working very hard at ....). 

yes i know it's better to get it over & odne with, which is why i scheduled it asap, but the past week has been prety hellish.  it'll be even better when the surgery is done and i get a clean pathology report, saying clear margins & no more cancer.  that's what bs is predicting & obviously what i'm hoping for.  i guess some of the reading on here has made me a bit nervous, b/c i know other people have had the experience of the surgeon finding things that didn't show up on mri or elsewhere, but i need to think positive, healing thoughts.  (and by positive i guess that would mean a "negative" or "clean" path report). 

i don't evenknow if what i'm saying now is more appropriate for another thread here? speaking of that, when you said i should "join" the other(s), did you mean join another website or read/post or whatever specifically on the threads/discussion board(s) on here (DCIS? general bc?) regarding radiation?

looking at your signature, i see you joined in mar'10, so i'm guessing that's what you meant?  i will definitely be readin & doing some more research before beginning treatment, but since i'm freaking out now, i might wait till after the surgery.  then i can't start for a month anyway, so i'll have time.

thanks again & take care.