2nd opinion? Overtreatment?

Slate, I just wrote a long post that disappeared due to a "system error" on BC.org.  Grrrrrrr!!

So, in an abbreviated fashion, let me say that I definitely think you should get a 2nd opinion.  Standard of care is a good starting point for the treatment decision, but there are many reasons why standard of care might not be the right course of treatment for some women.

In your case, you are young, and that could indicate increased risk.  But you had an extremely tiny area of DCIS, this extremely tiny area of DCIS was found (which means that screening works on you), your DCIS was grade 1, there was just a single focus of DCIS, and your surgical margins were likely very large.

All that points to a very low recurrence risk, even without rads. And it suggests that for you, the risks of the treatment (the rads) might actually outweigh the benefits of the treatment (the reduction in recurrence risk that you'll get from rads).

For a second opinion, you can either contact someone locally, or another option is to contact Dr. Lagios, who has been used by many women here to help with their rads decision.  If you search his name on this board, you'll find others who have contacted him.

Did the RO explain the pros and cons of radiation?. Mine did and wanted me to make the decision. After hearing of the possible dangers I decided against it.

I would get a 2nd opinion if I were you.

An RO might be helpful in explaining the pros and cons of radiation, but since an RO's job is to prescribe radiation, I'm not sure that you'll get a completely unbiased opinion on whether or not you would truly get much benefit from rads. A great RO would provide an unbiased opinion, but not all would. 

An MO might be more open to that type of discussion. 

You really are at the best and lowest risk level post lumpectomy. You had a teeny amount of grade 1 dcis, but your age, I suspect, will result in most any RO being conservative and suggesting rads. You have many many years of living ahead of you --  hurrah! Of course, the decision to have or not rads is yours to make and should be made once you understand the statistics for your specific medical information, as well as your risk adversion level. It is really hard to turn away a treatment, but you are at a low risk of recurrence. Will you sleep better at night having not undergone rads or having undergone them (I know, tough question)?

Another very good resource (that uses different factors than the Van Nuys Prognostic Index) is: http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspx

The problem is that none of these methods of calculating risk, VNPI, MSK, or Oncotype DX has been validated -- they are all experimental at this point.  

Beesie,  although the MSK predictor does not incorporate the size of the tumor/pathology directly, it does it indirectly, by asking how many re-excisions were done.  The re-excision risk is calculated the same for either 1-2 or for 3-4 re-excisions.  "Re-excisions" also includes the initial lumpectomy.  I agree that 3mm should not be equated with 5 cm, but one might presume that 5 cm would be hard to get in one to two surgeries.  In Slate5's case, since the 3mm was taken in the core biopsy, the MSK predictor might not even be valid to use at all, since there was already no pathology in the first lumpectomy.

Anyway, my surgeon is one of the authors of the predictor, and she didn't do it with me, so I guess it's a relatively imprecise instrument.  It does give those of us with large amounts of DCIS some idea of resulting risk with or without rads and possibly tamoxifen.  It is particularly striking how high the recurrence risk is if one doesn't do rads, having large dcis, necrosis, multiple re-excisions, family history, etc.  In that scenario, the indicated risks are very high.  It's probably a more sensitive instrument at that end of the spectrum than at the end of the spectrum where the amount of pathology is smaller.

Bl-I guess that the reason my surgeon did not do her own nomogram with me was because I fell into that highest risk category (high grade, necrosis, large amt, etc. etc.), so the treatment plan was laid out for me.  I did do the lumpectomy re-excisions (three total), knowing that the cosmetic result might not be great, but I just didn't want to do mastectomy for various reasons (not comfortable with recon choices, SNB, etc.).  When it came time to discuss radiation, well, there was no discussion--it was/is clearly necessary. She did ask whether I wanted Tamox or not (will be having a med onc consult on that). 

Oh Slate, you are in the most dreaded position.  Low-grade/ADH - or "borderline lesions" are truly the most unnerving.  Your age would suggest being as aggressive as you can bear (treatment-wise), but the risk of over-treatment is so high.  I am pretty sure that the small size of the lesion in in part why it is so hard to differentiate.  If you did decide to forgo radiation at this time, it would leave this as a treatment in the future, if you do end up being one of the unlucky few with a recurrence - it would be likely that they would be monitoring you so closely that they would catch any new lesion very soon -- however, there is always that chance that the reccurence would be invasive.  Even if it were invasive, it would be caught very early.  All that said, it would be, for me, hard to go through the constant monitoring that would be required if radiation would be skipped.  However, if it is closer to ADH than DCIS, then radiation will not help (most ROs believe radiation does not reduce risk in the case of benign breast lesions - although others believe it kills all proliferating cells) and you still would not be able to have radiation in the future if maligancy is diagnosed later.

Personally, I think you need to go outside of your hospital for your 3rd opinion - and you need to get the 3rd opinion yourself -- not have the pathologist obtain it.  Here are some websites for some groups that provide this service, note that these groups specialize in benign breast disease (ADH) so they will be very familiar with this type of pathology:

http://www.breastcancerconsultdr.com/

http://breastconsults.com/

You need to be the instigator here (your insurance will pay for it) --  meaning they report to YOU, and not your doctor.  The reason this matters is that it is a more "independent" review when the patient requests the review than when other pathologists request it.

Best of luck to you honey, it is truly an unenviable position to be in.  

Slate, how interesting about the second opinion.  

With the initial diagnosis of 3mm of grade 1 DCIS, it was certainly questionable as to whether rads were required / would provide much benefit. With this 2nd opinion, saying that the diagnosis might actually be ADH and not DCIS, for me, it would push rads out of the question.  

If rads had no side effects, that would be one thing.  But rads does have side effects and at this point it appears to me that the risks and side effects from rads, no matter how small they might be, are verging on outweighing any benefit that you might get from rads.  Rads won't provide any benefit if the lesion was ADH.  And if the lesion really was DCIS, with such a small low grade tumor and clear margins, it's likely that your recurrence risk is already in the low single digits, even without rads.  

The reason that you and your doctors are having this discussion/debate is because you were initially diagnosed with DCIS.  But as you know, there is a lot of debate about DCIS itself, whether DCIS should even be considered breast cancer, whether DCIS is being over-treated, whether DCIS always even needs to be removed. I worry whenever this discussion comes up because there are so many different diagnoses of DCIS; some are very aggressive and very much like breast cancer and do need to be treated and treated seriously. Too often lately we've seen women come to this board with serious DCIS diagnoses who think that because it's DCIS, they don't need any treatment.  But your case is not one of those. Your case, even if your diagnosis really is DCIS, is one of those that probably won't be considered breast cancer in 5 years or 10 years, once all the dust settles.  And if the diagnosis really is ADH, then it's not even breast cancer now.  If it were me, that's what would make the decision clearer now.

As for Tamoxifen, this is a different issue, since Tamox is sometimes prescribed to women who have ADH or other high risk conditions.  It's also sometimes prescribed as a preventative for the remaining breast, to women who've had DCIS and who've had a single MX.  So there are reasons to consider Tamoxifen, whether your diagnosis was DCIS or ADH. But you have time on this. I had a single MX and to my surprise, my oncologist actually prescribed against Tamoxifen for me.  I did a lot of reading up and ended up agreeing with his recommendation.  But he did tell me that I could start to take Tamoxifen at any point in the future.  As a preventative for someone who is high risk, you don't need to start it now; you can start it at any time.  So you can do your homework, understand your risks and the risk reduction benefits of Tamoxifen, understand the risks and side effects of Tamoxifen, and then decide to take it or not. 

ballet and BL, thanks for the explanations of the MSK model. I still find it odd. I don't see how the number of excisions can be equated with the size of the area of DCIS, maybe because I've seen so many different situations come through this board over all these years.  If someone is large breasted and if her DCIS showed up clearly on a mammo or MRI, it's very possible to remove a 5cm area of DCIS with a single surgery. On the other hand I've seen cases where someone else whose screening was less effective might need 3 excisions for a much smaller tumor. And while I understand that women who have the highest risk are more likely to have a MX, I know that there can still be huge variations in recurrence risk among women who have lumpectomies, and those differences don't seem to be reflected in this model.  For example, there will be a big difference in recurrence risk between someone who had a 3cm area of grade 3 DCIS with 2mm margins, and someone who had a 0.5cm area of grade 2 DCIS with 10mm margins. Yet the MSK model gives the same result in both of those cases. It just doesn't make sense to me. 

Beesie--I agree completely with redsox, that size of lesion is often very difficult to determine.  If the multiple foci of DCIS are adjacent, but not touching, or if there is space between them, how does one measure the total size of the lesion?  Then, if there are additional re-excisions, it gets even crazier, I'm sure.  In my own case, I had three lumpectomies to get clear margins.  In the first case, the surgery was done by a general surgeon, and the margins were not "marked".  There were multiple foci to the surgical margins, but yet not all slides had the DCIS.  Then there was a second surgery done by a breast oncologist with a close margin, and a third with wide margins.  So, I have no clue what the total size of the lesion was.  It can be estimated, kind of, based on the size of the tissue taken out in the first surgery (which had the most DCIS), with some consideration taken for the subsequent surgeries, but it is still difficult to determine.  At least 9 1/2-12 cm. were taken out, all told, but the amount of the DCIS was less than that.

Anyway, I think the value of the nomogram is to give a ballpark estimate of recurrence risk for lumpectomy alone, vs. lumpectomy with rads, and lumpectomy with tamox, and lumpectomy with tamox and rads (adding on other factors, including re-excisions, family history, and other factors). Listen, my surgeon is the author of the instrument, and she didn't use it with me.  She just gave me the general recurrence risk numbers.  I fiddled with the nomogram, and found it helpful enough to scare me into definitely doing the rads.  Without the rads, the recurrence risk was very high.

Slate--as usual, Beesie covered all of the important points.  It would be useful; however, to get a third path opinion, just to see if DCIS was seen again, by a third party.  I know that Johns Hopkins reads path slides at patient request. As BL stated (and she is a cancer researcher), there is a fine diagnostic distinction between ADH and DCIS sometimes, made more difficult by the small amount of tissue to be analyzed.

The nomogram is based on "easily obtainable" variables, that are not based highly variable (things that are going to depend on quality of pathologist/surgeon, etc or specimen - location, and how do you measure size with multifocal disease?  it is not contiguous area, usually).  Size, just like most of the pathologic variables from the VPNI, is highly dependent (e.g., highly heterogeneous) on specimen quality.  I am not advocating it as being better or worse, I am justifiying the variables that they used.  And, as I said before, the nomogram is usually not used for high-risk women - so if you had a discernable large mass that was all contiguously measured dcis then this nomogram would not be used in the first place.  

Regarding the 3mm issue, I realize that many women *might* make a decsion based on size of the original DCIS found - however, if it were that "easy" to assess risk of recurrence only based on size, then decision-making in DCIS would be much easier.  Since it has not been proven that any one specific variable (grade, size, hormone status) actually CAN be reliably used to define who would or wouldn't benefit from treatment - there are many many physicians and patients who would still decide on radiation after lumpectomy for ALL DCIS.  I am stating this to highlight Beesies statement - "With this 2nd opinion, saying that the diagnosis might actually be ADH and not DCIS, for me, it would push rads out of the question."  - so that those women who make an alternative decision understand that it is perfectly acceptable to do so.  We all have our own risk tolerance, and we all need to make decisions based on what is best for us, individually.  There are no well-defined (e.g., proven) markers for who may be "over-treated" at this time (unfortunately).

Slate -- my comment about you being the requestor for the 3rd opinion was because I wanted the person doing the pathology review understand that it was for you and not another physician.  It might not matter in the end, but personally, I felt much more secure having a pathologist directly discuss their findings with me directly.  However, in the end, I did (of course) make the final decision with with my team - something about not having a go-between, made me feel better (control issues? who me? ;-) ).

Also, if I remember , there used to be guide lines that suggested DCIS that was under 5 mm,

Lower grades ( no necrosis), one centimeter margins , may not need radiation. My docs are from Northwestern hospital in Chicago and still use that formula. Age is also factored in.

NCCN guidelines "generally" consider large, multifocal masses, especially coupled with grade 3, as candidate for MX (probably because large multifocal masses generally involve more than one quadrant of the breast).  I know this is not a hard and fast rule, but typically, those parameters are more likely to have MX recommendation - at least here in the U.S.

Another thing to keep in mind, and mind you I am NOT trying to push any one risk evaluation method over another, when using any risk predictor, they are built using statistics.  This means that, as most statistics are, it is based on population estimates - these estimates are not always error-free on an individual level -- meaning that they might over-estimate some women, and under-estimate other women, and be "right on" on average.  It is just the way ANY risk calculator (based on any methods, e.g., genomic, pathologic, etc) are going to work.  There will never be a completely error free risk estimator.  

Decisions about treatment, though guided with personal experiences of others, and possibly information found online, really need to be made on a case-by-case basis with your medical team.  Despite the wealth of information on BCO, it really shouldn't take the place of trained medical personnel.  One thing that BCO shows you, there are many experiences and many medical opinions made in our individual situations, and unfortunately, there are no hard-and-fast rules, yet, that have been validated to make treatment decisions.  Many people assume that size, grade, etc. are obvious factors - however, there really has not been any demonstrated studies that validate these factors, no matter how "obvious" they seem.  Until the time as there is some validated method for making these treatment decisions, the best we can do is trust our medical team in their ability to lay our risk and benefit ratios and then make the best decisions we can based on those.