Re-excision

Kitchenwitch

Well, surgeon says I need a re-excision on the original spot of DCIS and the biopsy also turned out to be DCIS, so she's going back in. I'll have to have a mammogram first (in about 2 weeks), and she says there is a very good chance I will NOT have to have the wire(s), which will make it a much quicker procedure. So I'll be praying for that.

I'm not thrilled of course, but I do think she did a superb job. My breast is in great shape and I don't feel at all bad. At least I'll know what I'm in for in terms of healing and recovery this time. 

The path report said I have grade 2 with some necrosis. I asked her about the Van Nuys scale and she kind of winced and said they haven't been able to replicate the results, and there was some discussion about the scale at the last breast conference, and how some people seemed to be leaving it behind. At stage 2 I will definitely be having radiation, and that's cool. I've made peace with it. 

Thanks, everyone, for your good wishes and prayers and healing thoughts!

dsj

I'm so glad you got good news.  I've been thinking about you all day.  It sounds like you and I may be in the same boat.  I got my results today over the phone from a nurse.  All DCIS, grade 2, no necrosis identified, but the smallest margin is .5 mm.  I asked about margin size and re-exicision.  She said I would have to talk to the doctor, but everything I read says minimum margin is 2-3 mm.  I will see BS on Monday.  I feel so grateful that I don't have anything except DCIS, and yesterday I was telling myself that if it was just DCIS, I wouldn't be upset about having to do a re-excision.  But of course, the idea of still having more surgery to do is, as you say, not thrilling.  Do you have any idea how long one has to wait between lumpectomy and re-excision? 

3monstmama

So glad to hear that you both---Kitchenwitch and dsj---are only grade 2.  Thats certainly good news and quite a relief I am sure.  

The wait time depends on your surgeon.  Mine got me in right away--1st procedure was a Monday morning, got my results the next day, saw her on Wednesday and was back in that Monday afternoon/evening.  When we met before the second time, she told me she was only going to take out a piece about the thickness of an orange rind.  That got my margins over 1mm.

On my second they also skipped the wire because they knew right where they were going. 

I am now a full month out from the 2d procedure.  The soreness was mostly gone by the end of the first week.  I stopped the percocet the Thursday or Friday after the first surgery---I traded for red wine!  When I look at myself from the top, I can see an indentation but I don't really see it with clothes on and since my work isn't clothing optional, its not been such a big deal.  My husband thinks I look just fine. . .  

One thing I did after the second surgery that really seemed to help with the sleep was to sleep on the sofa.  I put pillows behind me, stretched out my legs and had my "badboobie" next to the back of the sofa.  This made it VERY easy to keep an icepack on while I slept.  It also kept me from rolling over and disturbing my sleep.  My husband wasn't too thrilled but it was only for 2-3 nights.  The cat, on the other hand, was quite pleased since he was disturbed by my rolling over either!

mom3band1g

Yea, glad you both got good news!  Hate that you have to go back for re-excision but I guess that is fairly common and still good news all around.

k

SJW1

 

KW, 

The latest study that replicates the results of the Van Nuys Prognostic Index is listed below. I am not sure why your surgeon was not aware of it..maybe because it is a relatively recent study.

That being said, each person needs to weigh the side effects of radiation versus the amount of risk they feel is safe for them.

Local Excision Alone Without Irradiation for Ductal
Carcinoma In Situ of the Breast: A Trial of the Eastern
Cooperative Oncology Group
Lorie L. Hughes, Molin Wang, David L. Page, Robert Gray, Lawrence J. Solin, Nancy E. Davidson,
Mary Ann Lowen, James N. Ingle, Abram Recht, and William C. Wood

Journal of Clinical Oncology, Vol 27, No 32 (November 10), 2009: pp. 5319-5324
© 2009 American Society of Clinical Oncology.

Best wishes in whatever you decide,

Sandie

Kitchenwitch

Sandie, I don't think my BS is unaware of current and recent studies - what she said was that they (meaning her own dept) has been unable to replicate the Van Nuys results.

I am most likely not a good candidate for tamoxifen since I have a predisposition to clotting -- I'll do the bloodwork again to see -- so I really think rad is my best chance to reduce recurrence.

I can't access the study you've cited since I don't have an id or password for the Clinical Oncology Society. Can you post a direct link to it?

redsox

Kitchenwitch,

The following link should get you to the abstract of the ECOG study.

http://jco.ascopubs.org/cgi/content/abstract/27/32/5319

The full paper still requires a password -- with many journals that is true for a year after publication.  This is a good study which found a very low recurrence in the most favorable group of patients.  There are still questions that would lead most doctors to wait for more data.  The follow-up is only 5 years.  Other prospective studies have found low recurrence rates for low risk DCIS patients at 5 years only to have the rates increase after that.  There is some reason to think that low grade does not have much, if any, lower risk of recurrence ultimately, just a considerably longer average time to recurrence.  Since I hope to live a lot more than 5 years I want to see what happens from 5-10 years and even after 10. 

Also, the results are much better than other studies that have tried to find a favorable group of patients who can be spared radiation.  One of the most widely cited is the following one from Dana Farber:

http://jco.ascopubs.org/cgi/reprint/24/7/1031

It was closed to accrual early because the recurrence rate exceeded the predefined stopping rule. 

The question is which study do you believe?  ...or how do you reconcile them?  ...or do you wait for longer follow-up and reports of other studies not yet published? 

There was an editorial accompanying that article which did a good succinct job of summing up the literature at that time.  

http://jco.ascopubs.org/cgi/content/full/24/7/1017

That was several years ago and additional reports and updates of studies have been published since then.  Most have not changed the picture except for the ECOG study which looks more promising than the others.  If you want a more updated summary of the literature you can go to the NIH Consensus Conference on DCIS that was held last September. 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.  This topic is most specifically addressed in the last hour or so of day 1 when the speakers are Dr. Solin who wrote the editorial I cited and Dr. Silverstein who was principal author of the Van Nuys Prognostic Index (VNPI).

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

Watching it yields some surprises. Dr. Silverstein emphasizes margins much more than the 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. 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. 

This seems to be the conclusion most doctors are coming to and why your doctor says they are moving past VNPI.  Margins are very important if you want to consider skipping radiation.  Other factors in the index, size, grade, and age, are risk factors, along with some 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.) 

The bottom line -- if the surgeon can get really wide margins you may be able to skip radiation and have a modest recurrence risk.  In your case you don't have good margins and even if other factors in the VNPI are good most doctors would not accept that as a basis for accepting those margins.

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.    

sweatyspice

Redsox, are you sure that was the last hour of the first day?  For some reason I think it might have been the last hour of the second day, but I'm admittedly too lazy to check.  I think it should be required viewing for anyone considering whether to do rads.

I've seen the three days at least twice, maybe I should go and watch that section one more time before I have my first treatment, to make sure I'm OK with what I'm doing....which I think I am.  I don't like it, but I think rads makes sense in my case.

I have pretty fat margins from the DCIS (4mm and 7mm), but there's residual LCIS and ADH (or ALH, don't remember and don't want to look at the path report again), so I'm hoping that rads kills the other non-healthy stuff, though as I understand it, no studies have been done on that so there's no way to know.  I'm basically just crossing my fingers, throwing the 'kitchen sink' at it, and hoping for the best.

redsox

SS,

I went back to check the video.  It is the end of day 1 at about 6 hours, 40 minutes.  I have also watched all three days once and sections I was interested in two or more times. 

The margins most doctors seem to be moving to for considering skipping radiation are >1 cm, so yours are perfectly good but not as big as those.  Your other abnormal but not cancer cells may be risk factors with no good data to evaluate and not taken into account by VNPI.  A simplistic application of the VNPI probably would have put me in their "no radiation" category, but I had at least 5-6 other factors that suggest that would be a bad move.  Both the ECOG and Dana Farber studies tried to define a favorable group to skip radiation on.  I would not have met the eligibility criteria for either of those studies.  The devil is in the details.

sweatyspice

Thanks, RS.  That's pretty much what I figured.  Plus, since I was multicentric grade 3, well, the VNPI isn't designed for that to begin with.  I sent Silverstein an email when I was deciding on type of surgery, he basically yelled at me.  LOL

dsj

Well, I listened to a long stretch of the first day of the NIH video from the DCIS Consensus Conference, and I have realized that margin status is a lot more complicated than just the "2 mm rule."  I wish I understood statistics better, because a lot of this seems to be based on how the data are interpreted and the difference between retrospective and prospective studies.  The most interesting part (for me) was the talk by the radiation oncologist and her discussion of the efficacy of a "boost" of radiation for close margins.  I'm going to try to understand that research a little better before meeting with the radiation oncologist next week.  This is all becoming pretty interesting (in a weird sort of way): a kind of intellectual quest to understand. 

redsox

dsj,

The main point of boost is to increase the dose to the area of the breast at greatest risk.  I had a dose of ~50 Gy to the whole breast and an additional ~10 Gy for the boost.  That increased the dose to the area at greatest risk to ~60 Gy.

The ideal data is 3 or more prospective randomized clinical trials that show reasonably consistent results.  That is why so many speakers talked about the 4 clinical trials showing that radiation treatment reduced the recurrence rate by ~50%.  That is really impressive data.  We will never achieve that for all the questions we would like data on for many reasons.  Clinical trials cost a lot and take a long time.  They can yield misleading results -- even with randomization you can get statistical flukes (that is why more than one study is better than just one). They can only answer narrow questions because physicians and patients have to be willing to accept the treatment that comes out of randomization.  If they think one treatment is better they will not accept randomization.  You can only test one change or a small number of changes at a time. 

Retrospective studies are useful but their big problem is potential bias.  If you look at the data for patients who received different treatments usually the patient characteristics are different.  Maybe the most favorable group got the most aggressive treatment.  If the patients in different groups were intentionally treated differently then you don't know if outcome differences are the result of the treatment or the underlying characteristics of the patients or disease. If you use that data to claim that the treatment resulted in better outcomes the claim will not be accepted by many.  Data from retrospective studies can be useful but the disagreements revolve around the quality of each study. The most important point is to match the study design with the interpretation.  When investigators try to make conclusions that are not justified by the methods and data, they will get pushback. 

It does get fascinating in a strange way, I agree.  Watch out -- I have now developed a surprising fascination with cancer biology!