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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: 2nd opinion? Overtreatment?

Topic: 2nd opinion? Overtreatment?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Nov 19, 2012 08:48AM

slate5 wrote:

This is not the dilemma I expected to have. I posted a few weeks ago that my lumpectomy pathology showed no malignancy-- so I was fortunate that my dcis was removed via the core needle biopsy. It was described as a 3 mm area. The tumor board at the hospital discussed my case and recommended radiation as the standard of care. I did not discuss this with the MO in person (and now I wish I did b/c I feel so confused). She referred me to the RO who recommended 33 days full breast rads. When I expressed my concern about overtreatment, he explained the standard of care again and said I might feel better if I get a second opinion (which oddly made me feel worse). Now I am just freaking out about what to do. If it is the standard of care, won't all doctors say the same thing? I am 42. Does my age make the treatment a gray area? I am not sure where to start.

Dx 10/2/2012, DCIS, <1cm, Grade 1, ER+/PR+ Surgery 10/18/2012 Lumpectomy: Right
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Nov 19, 2012 11:32AM Beesie wrote:

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.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 19, 2012 11:52AM mrenee68 wrote:

I feel a second opinion can never hurt. Knowledge is power. Ask lots of questions, doctors can have different thoughts on treatment. Good luck.

"Embrace the suck!" Surgery 7/22/2012 Lumpectomy: Left Dx 7/27/2012, DCIS, Stage 0, Grade 1, 0/2 nodes, ER+/PR+ Surgery 9/30/2012 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 1/22/2013 Reconstruction (left) Surgery 5/7/2013 Reconstruction (left)
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Nov 19, 2012 12:01PM dogsandjogs wrote:

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.



Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Nov 19, 2012 03:03PM slate5 wrote:

Thank you so much for the responses. Do you think I should talk to another MO or an RO? I called a cancer center in my area and can't get an MO appt for weeks but can get in with an RO. Will that work? My primary care doc said it would be an MO appt, but I don't have a lot of options right now.

Dx 10/2/2012, DCIS, <1cm, Grade 1, ER+/PR+ Surgery 10/18/2012 Lumpectomy: Right
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Nov 19, 2012 03:16PM Beesie wrote:

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. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 19, 2012 03:35PM dogsandjogs wrote:

I agree. I was very lucky with my RO; he did not try to influence me one way or the other. But maybe he is unusual!

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Nov 21, 2012 05:38PM CTMOM1234 wrote:

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)?

When I grow up I want to be an old woman. Jan'10 lump.for grade 2 DCIS;SURPRISE1.75mm grade 2 idc in path report,stage 1a; Jan'10 snb 0/3 nodes; Mar-Apr'10 rads: 25 full+5 boosts prone position, stickers/no tats; May'10 declined tamox. Doing fine. Dx 11/1/2009, ER+/PR+
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Nov 22, 2012 11:04AM andygirl wrote:

slate5- I can totally relate to how you feel. After my diagnosis, I struggled with radiation issues as well. Because it is left breast, I was concerned about heart issues. To my great surprise, my RO told me if I get good margins and it was contained in the ducts, he would consider no radiation. Well, after 2 surgeries, I have good margins and I chose to forgo the radiation. I really feel, you have such a small area, and low grade, another opinion is a good idea. This is the hardest part about DCIS. Trying to figure out how much is too much treatment.

Dx 8/8/2012, DCIS, 2cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2- Surgery 10/18/2012 Lumpectomy: Left Surgery 11/6/2012 Lumpectomy: Left
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Nov 22, 2012 02:48PM slate5 wrote:

Thanks to all the encouragement on here, I called around and was able to get a last minute 2nd opinion. My age is the main factor in the recommendation for rads. Dr did say that it's not going to a big difference in chances of recurrence. I agree with the post above -- it is hard to turn down a treatment. I was hoping to hear something different but it was very helpful to get another perspective.

Dx 10/2/2012, DCIS, <1cm, Grade 1, ER+/PR+ Surgery 10/18/2012 Lumpectomy: Right
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Nov 24, 2012 04:53PM SJW1 wrote:

Slate5,

What you really need to know to make an informed decision is what your risk without having the radiation would be. If it is relatively high, the benefits might outweigh the risks for you. However, if is only 4 percent for instance, the typical 50 percent risk reduction that radiation provides might not be worth if for you.

The Van Nuys Prognostic Index is one way to calculate this risk. It is based on your age, the size and grade of your DCIS and how large your surgical margins were. When I was diagnosed with DCIS in 2007, after having a lumpectomy, I decided to omit radiation after talkingto Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service that anyone can use. This was because he calculated my risk as only 4 percent.

You can also request the Oncotype DX genetic test to calculate your risk. Although quite expensive. it is another tool that might be useful for you.

At any rate, because DCIS is noninvasive, you can take your time and weigh all your options before you rush into anything.

If you would like more info about Dr. Lagios or want to read more of my story please feel free to check out my website: http://dciswithoutrads.com/

Please also feel free to PM me with any questions you might have.

Wishing you all the best,

Sandie





Dx 6/22/2007, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Nov 24, 2012 05:07PM BLinthedesert wrote:

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.  

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Nov 24, 2012 08:16PM Beesie wrote:

BL, what I don't understand about the MSK predictor is that they don't incorporate the size of the tumor.  Every study that I've seen suggests that the size of the area of DCIS is a significant factor in the likelihood of recurrence.  Slate had 3mm of DCIS - it's hard to imagine anything much smaller being detectable. There's simply no way that her recurrence risk would be the same as someone else who completed the MSK form identically, but who had a 2cm or 5cm area of DCIS. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 25, 2012 08:08AM ballet12 wrote:

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.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/25/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Nov 25, 2012 08:25AM - edited Nov 25, 2012 09:16AM by BLinthedesert

Another reason that the MSK predictor does not directly address size is that it is ONLY for those women who have had a lumpectomy.  It is pretty much standard-of-care that if you have large area or multifocal DCIS that MX will be recommended (primarily because of cosmetic outcome, but also risk).  So, theoretically, this calculator would not be appropriate for women who are in that  highest risk category.  The way that the Oncotype test works (for both DCIS and invasive cancer) is that there are three levels of risk - low-medium-high.  The standard of care is pretty well worked out for high risk women.  The real question is how to differentiate low-and-medium risk -- as these are the women who will get either under-or-over treated.  The NCI Oncotype study only randomizes those women who are determined to be "intermediate" risk.  The Oncotype DCIS, and VPNI tries to stratify into low and high risk.  The MSK predictor gives an individual risk percent.

Here are some most recent papers regarding the MSK nomogram: jco.ascopubs.org/content/30/25... and http://jco.ascopubs.org/content/30/25/3144.full

The one drawback about the VPNI (and Lagios admits this in many journal articles) is that it requires a lot of time and detailed pathology review that is unlikely to happen in most cases.  Most clinical pathologists are "generalists" - they review all pathology specimens.  Breast specialists (or any other organ system specialist) is not available at every lab, and even if they were, they go through so many specimens/day that it is unlikely that could do the detailed type of review that is expected when using the VNPI.  One of the positives about the MSK predictor, is that it uses data that are easily attainable for most women.  The downside is that it might not be as precise as those predictors that have more detailed genomic (Oncotype) or pathologic (VPNI) variables.

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Nov 25, 2012 10:00AM ballet12 wrote:

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). 

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/25/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Nov 28, 2012 06:01AM slate5 wrote:

I wanted to post an update that my 2nd pathology report came in and it conflicts with the original. I haven't seen a copy but I believe it says ADH rather than DCIS. The doctor has offered to get a 3rd pathology opinion, or said I could get the opinion of a new team at another hospital. I could also monitor the situation (skipping the rads) but still try tamoxifen. I guess the pathologists have communicated but are not in agreement, so that is why there is talk of tie-breaker. Wow, it's neverending! Not sure yet...

Dx 10/2/2012, DCIS, <1cm, Grade 1, ER+/PR+ Surgery 10/18/2012 Lumpectomy: Right
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Nov 28, 2012 06:48AM - edited Nov 28, 2012 06:50AM by BLinthedesert

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.  

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Nov 28, 2012 08:34AM slate5 wrote:

BL, thanks so much for your thoughts! Quick question, it's not the pathologists who seek 2nd opinion it is my RO. Also 2nd opinion was from mayo clinic so i do have one "outside" source. But you are saying that I should be the one looking into it? I guess I need a tie-breaker?

Dx 10/2/2012, DCIS, <1cm, Grade 1, ER+/PR+ Surgery 10/18/2012 Lumpectomy: Right
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Nov 28, 2012 09:30AM Beesie wrote:

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. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 28, 2012 10:51AM - edited Nov 28, 2012 11:00AM by redsox

The likely reason that the MSK model uses number of re-excisions rather than size of lesion is that the estimate of size of lesion is often not very accurate for those with >1 excision. Adding up the size of tumor pieces believed to have been adjacent in the breast is possible but not precise enough to be any better than number of excisions.  For similar reasons, estimates of margin size may be less precise for those with multiple excisions.  

Nomograms are useful in giving a general idea of the level of recurrence risk but the precise number is just a point estimate.  Some patients really have lower risk and some higher.  For most the predicted values should be a good estimate, but in some cases other factors not included in the nomogram may be quite important.  

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Nov 28, 2012 12:54PM ballet12 wrote:

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.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/25/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Nov 28, 2012 02:10PM Beesie wrote:

Ballet and redsox, you are both of course right that the size of a tumor often can't be known with any certainty.  I know that from my own diagnosis; I had two areas of DCIS (although in the end they might have been one since there was so much DCIS spread throughout my breast).  Neither area had any no clear margins after the first excision. When I add it all up from the two pathology reports, I get an approximate amount but it's far from precise. What I do know is that I had a lot of DCIS, over 6cm. So maybe it's not the exact size of tumor that should be included in a nonogram, but a size range. Less than 1cm to indicate a smaller tumor.  1cm to 3 cm to indicate an average sized tumor. Greater than 3cm to indicate a larger tumor. Or something like that.  

I guess what concerns me about the MSK nonogram is that when I input Slate's info, I come up with a 10 year recurrence risk of 18%.  From everything I've read about DCIS over the years, I don't believe that's in the ballpark for a grade 1 lesion that's as small as 3mm, with good margins. On the other hand, when I input my data (assuming I'd had a lumpectomy instead of the MX), despite requiring two surgeries and having close margins and a large grade 3 tumor with necrosis, my 10 year risk is only 36%. From everything I've read, I suspect my recurrence risk might be significantly understated. I appreciate that tools of these sort at best give you a ballpark estimate of your recurrence risk; I guess I'm just not sure that this particular tool is even in the ballpark. If women are using this tool to assist with a decision on rads or hormone therapy, those with smaller tumors might over-estimate their risk and choose to have additional treatments in situations where they otherwise might not have, and those with larger tumors might under-estimate their risk and choose to pass on treatments that they really need.  Ballet, maybe that's why your surgeon didn't use it. 

Slate, a couple of points of clarification about my earlier post.  First, in saying that I think your 2nd opinion provided more clarity, I'm not suggesting that a 3rd opinion wouldn't be useful.  The fact is that you have conflicting findings, so a 3rd opinion to break the tie could be very useful.  I also want to clarify that I said what I did in the context of you already questioning whether rads are necessary.  If with your 3mm of DCIS you were certain that you were going ahead with rads, then these new results might lead to you question that decision, and here a 3rd opinion would be not just useful but necessary to your decision-making process.  But since you've already been questioning the need for rads with a diagnosis of 3mm of grade 1 DCIS, the fact that your DCIS might actually be ADH seems to me to be a clarifying factor.  That's just how I see it, of course.  How do you feel about this finding?  Any new thoughts since you got the news?

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 28, 2012 02:49PM - edited Nov 28, 2012 02:57PM by BLinthedesert

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? ;-) ).

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Nov 28, 2012 02:54PM - edited Nov 28, 2012 04:23PM by BLinthedesert

Beesie, your pathology included a microinvasion, so the nomogram would not pertain to you.  Nor would it be accurate for you based on large masses, or high degree of multifocal disease, so I don't think it is correct to assume the nomogram doesn't work generally - it only works for the population it was intended to be used for: pure stage 0, with low-to-intermediate risk.  Slate was also considered "high risk" so that is why it was not advocated for her use.

And yes, it has been stated somewhere, that the GSK nomogram is likely to overestimate risk, however, it has also been stated somewhere else that VPNI underestimates risk.  The problem is -- for right now, there is NO validated measure for risk - and we are all faced with working with the measures of risk we have available, knowing they are probably not a true indication of risk.

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Nov 28, 2012 05:10PM slate5 wrote:

To answer the question regarding how I feel about the finding-- at first I felt happy but when it sank in and I heard that the pathologists don't agree and my doctor seems uncertain, it occurred to me that I may never get a concrete answer.  At times it seems ridiculous to be getting 2nd and 3rd opinions about a tiny cancer (or non-cancer) which is part of what makes this difficult for me. My husband has gone through biopsy, multiple surgeries, chemo and radiation for cancer, and we never second-guessed his treatment. So this is kind of strange and I almost feel like I am shopping for the answer I want to hear. 

Dx 10/2/2012, DCIS, <1cm, Grade 1, ER+/PR+ Surgery 10/18/2012 Lumpectomy: Right
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Nov 28, 2012 05:38PM louishenry wrote:

Hi Slate,
I'm writing to you because my DX was very similar to yours. My biopsy showed 4 mm DCIS, grades 1-2. The biopsy removed it all and I had a lumpectomy that didn't have anything in it but healthy tissue, thus very large margins.

I sent my slides to another pathologist that didn't feel it was DCIS but ADH.
I did not get a third opinion because while the second pathologist was looking at my slides,
I was getting opinions on radiation.

Two RO and my Onc did not recommend rads, therefore a third opinion wasn't necessary.
Tamoxifen was an option and I took it or 5 years.

So I guess I would be surprised if you needed rads. I can't remember your age. I was 45 at DX . I'm now 50. Surveillance hasn't been a big deal. I get an annual MRI and I rotate with mammo and US. At some point I'm sure ill stop the MRI but I'm not ready to do that yet. In fact, I told my onc that I wanted to try femara or another AI, but he wouldn't give it to me.
Good luck. Things get better with time. I still worry but much less than I used to.
Nada

Dcis May 2007, 4 mm, grade 1-2, no rads recommended. Tamoxifen September 2007 .BRCA 1/2 Negative. Sis with LCIS
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Nov 28, 2012 05:46PM louishenry wrote:

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.

Dcis May 2007, 4 mm, grade 1-2, no rads recommended. Tamoxifen September 2007 .BRCA 1/2 Negative. Sis with LCIS
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Nov 28, 2012 07:11PM Beesie wrote:

"I almost feel like I am shopping for the answer I want to hear."  Slate, what is the answer that you want to hear?  Smile  You have a lot of information about your diagnosis and your risks.  Ultimately you have to go with your gut (provided of course that you have an 'educated' gut).  So does that give you your answer?

Nada, good information.  And it's great to see you!  I'm glad you are doing well, 5 years out.  

As a further clarification to my earlier post (gee, you would think with all my long posts, I wouldn't need to keep clarifying!), I wasn't basing my assessment of recurrence risk and the lack of need for rads in Slate's case just on the 3mm size of her tumor, but also on the fact that it was grade 1 and that it was all removed during her biopsy and yet she still had surgery where no more cancer was found (suggesting that the margins likely are pretty good).  It's not a single factor but the combination of the 3 factors that suggest to me that the recurrence risk in this situation is likely very low. 

BL, yes, I did have the microinvasion so I realize that in reality I couldn't use the MSK nomogram. I completed the form using the assumption that I didn't have the microinvasion. The microinvasion really doesn't factor into my recurrence risk so I'm not sure that it would matter anyway. Could you explain your comment "Nor would it be accurate for you based on large masses, or high degree of multifocal disease"?  In inputting my data, I didn't see anything to suggest that I couldn't rely on the results because I had a large mass of DCIS or grade 3 DCIS or multifocal disease.  From how it's written, it would appear that anyone who's had a lumpectomy for DCIS can use this nomogram.  Although I had a MX, my surgeon offered to try a re-excision.  If the re-excision had provided minimally acceptable margins, then I would assume that the nomogram would have been applicable to me (other than the little issue of the microinvasion, of course Wink).  What am I missing? 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 29, 2012 05:50AM - edited Nov 29, 2012 06:09AM by BLinthedesert

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.    

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Nov 29, 2012 06:20AM ballet12 wrote:

BL--can you clarify the difference between "multifocal" and "multicentric".  I kind of think that multifocal can just mean the involvement of a number of ducts in adjacent areas, whereas multicentric seems to mean several clustered areas, which may or may not be near each other.  It seems to me that it is "multicentric" disease which would lead to mx or, as perhaps in Beesie's case, "diffuse" disease would lead to mx.  Multifocal could still only mean a somewhat smaller area, but more than one duct being involved.  Correct me if I'm wrong.  Anyway, as we all know, there are some who MUST have mx, given multicentric disease, and many who choose mx vs. lx for all sorts of reasons, such as risk aversion, concerns about cosmetics, family hx, avoidance of future biopsies and agonizing surveillance, etc.  It would appear to be true that those with large areas of involvement who have multicentric disease would most likely need the mx, and the guidelines would support that, but others with "multifocal disease" with 5 or more cms, for example, might still opt for lx, so long as imaging (as fallible as it is) does not indicate widespread involvement.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/25/2012 Lumpectomy: Right Radiation Therapy 1/11/2013

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