New York Times article in today's Sunday Times

Hello Ballet12

Very pleased you are highlighting this article - especially p.4 re DCIS.

This is my story in case it helps anyone else with Grade 3 DCIS.

In brief, the docs in the UK knew I had Grade 3 Her2+ IDC after a fine needle aspiration and punch biopsy. But they hadn't tested the DCIS. They said that if the DCIS was low grade, provided other factors were OK, they thought it would be OK to do a lumpectomy rather than a mastectomy.

However, if I wanted to do a lumpectomy they wanted to test the DCIS to discover its grade. If high grade, they wanted to do a mastectomy.

Once I'd heard the magic words - a Grade 3 HER2+ IDC tumour - I wanted the breast gone as soon as possible. I didn't bother getting the DCIS tested.

After the mastectomy, the docs discovered I had 3.8cm of Grade 3 DCIS with comedo necrosis. Interestingly. these were exactly the same features found in the 2.4cm IDC lump. It's as if the features of the DCIS replicated themselves.

On a positive note, despite a 2.4cm tumour, I had no lymph node or blood invasion.

It's still the same one year on and I am doing well after 8 rounds of chemo, 12 rads and Herceptin (please see my signature).

Hope this helps anyone reading this.

Best wishes

Alice

Hi Ballet12, well, that is a complicated story I'll try to make simple.  My gynecologist started sending me for mammography about two years before I was diagnosed because she felt like she couldn't get a good manual read on my dense and lumpy breasts.  My lump has been called "probably benign" for a long time, though I have no idea why:  it's exactly what cancer looks and feels like.  Meanwhile, they were biopsying everything under the sun.

One day, almost three years ago (glad to say that!), I was putting my bra on, and I found the "probably benign" lump myself.  I knew without a doubt exactly what it was, it felt like a pea under my skin.  And I was so so so lucky it really popped up to the surface somehow, I'd never seen it before.

Perhaps mammography and biopsies made me more aware, that is hard to say.

I read the article over the weekend and felt it seriously downplayed the significance of DCIS.  In my case, I was diagnosed with DCIS in two places in the breast that were far enough apart that mastectomy was my only choice.  The DCIS arose in the year between mammograms and my surgeon said he was confident I had only had it for six months.  It was grade 3. 

I went with a BMX for various reasons including the fact that the DCIS arose so quickly between yearly mammograms as well as the fact that I have very dense breasts (something I didn't know from my yearly post-mammogram letter, but which was all over my records once I saw them).  Unlike the article writer's oncologist, my breast surgeon at what many consider the best cancer hospital in the nation was fine with doing a BMX.  In fact, I think he thought it was a good way to go, but didn't want to say that since it's not standard practice unless the patient has the BRCA 1 or 2 gene.

Well, upon final pathology after my BMX, there was, as my breast surgeon characterized it, a "surprise" -- 3mm of IDC plus some microinvasions.  And, it was triple negative.  Now suddenly there was a referal to an oncologist and a debate among the oncology staff as to whether I should have chemo.  Plus, there is a very recent study indicating that triple negatives have a higher rate of recurrence in the contralateral breast and, therefore, BMX may be particularly advisable for triple negatives.

So, I felt the article downplayed the significance of DCIS.  Had I taken no action with respect to the DCIS, and relied on the biopsies indicating it was only DCIS, I might have had a much worse prognosis.  Plus, I think the article was too dismissive of BMX and the very good and defensible reasons women choose it.  The article said something about not cutting off a good limb.  But, frankly, one breast already did all it could to kill me.  I didn't feel like giving the other breast that chance.  And, much as I would like to still have my breasts, given what has happened, I am happy and relieved they are gone. 

Beyond that, I did think the article rightly pointed out how races for the cure and whatnot have really become self-perpetuating money machines, having little to do with cancer prevention and cancer cure. 

Also the latest studies seem to indicate mammography radiation is fairly negligible.

bear4196

at what stage are you exactly in your diagnosis/treatment journey? have you had a needle or core biopsy? in addition to being told comedo, have you been told the grade and size of the tumor/area involved and whether your dcis is er/pr+? Maybe I am misinterpreting your posts, but I would hope that the surgeon is not planning to decide whether or not to do a mastectomy based "on what they see when they get in there". With a DCIS lumpectomy, there often isn't much to see because it isn't necessarily in the form of a "tumor", it can be spread out- with gaps along the duct/s. The surgeon has usually visualized via ultrasound or mri the area to be excised and takes extra tissue - creating a margin all around the mass which, hopefully when reviewed by pathologists, will be cancer free. This pathology review is not usually done at the time of surgery.    You and your surgeon should have a good idea going into your surgery based on mammogram/ultrasound and sometimes MRI - how big an area is involved and if there is more than one area - factors which might lead you to consider a mastectomy.

Here is another great reference for you. http://www.nccn.com/files/cancer-guidelines/breast/index.html#/1/  the DCIS specific guidelines start on page 60.

Pat....Orenstein's comments that I posted are from TODAY'S New York Times. 

Thank you for posting the link to Peggy Orenstein's Sunday NYTimes article and also her blog response to why she wrote it. I appreciate her perspective and confess that reading of her recurrence after so many years touched a very sensitive worry nerve. But I continue to be thankful for mammography, and I hope to live a very very long life. Here's my story:

My grade 2 DCIS was picked up as a cluster of micro-calcifications from a routine annual mammogram (and confirmed from a stereo.biopsy) in my early 40s 3.5 years ago and had not shown up the year before. There is no bc in my family and I appear to have no known risk factors. Coincidentally, the recommendation that U.S. women with few/no known risk factors should wait to have annual mammograms until age 50 came out within a few months of my diagnosis.

Perhaps if the final pathology report from my lumpectomy had only shown the couple of cms of grade 2 DCIS I might feel differently about the mental and physical stresses of mammogram and biopsies and surgery. But as unluck would have it, in addition to "beating the odds" of me having DCIS at my age and background in the first place, I beat the odds again and 1.75 mm of grade 2 IDC was uncovered in the final pathology. Surprise, I became a Stage 1 bc patient.

Early detection for me seems like a no-brainer. I did not need chemo due to the modest size of the IDC (and favorable sentinel node biopsy thankfully), and although I do not know what would have happened had I not had mammography, I am too afraid to type what could have been.

The author covered so many issues in that article. I agree with her that it would be nice to better understand which DCIS is likely to lead to IDC but it is rather a moot in my case.

Interesting article, but as I had the exact same experience as CTMOM1234 (except that both my DCIS and IDC were smaller than hers) that I have to agree that while I think that it would be wonderful if we could predict which DCIS is more likely to lead to invasive cancer, I am not willing to say that mammography does not have its benefits.

Had I waited until the recently recommended age 50, my cancer could have had another 5 years to develop, which is a frightening prospect as even if it was found (either by that eventual mammo or by becoming palpable) before metastasizing who's to say it would still have been able to be treated by "just" a lumpectomy and rads?   I'm glad it was found while small enough to avoid a mastectomy and chemo, even if the eventual survival outcomes might have been the same.

I'm interested in this article but not DCIS patient.  I notice it's not uncommon on this board for everyone to view things through their own prism of their own particular form of the illness, and their own choices with regard to that.

I respect all, as no doubt I do the same thing! I just post to say that I don' think that getting into the details of DCIS - low risk , vs med. risk, vis high risk - and how to treat each - was the point of her article.  The point was much bigger about the war on cancer in general. And that to put statistics about DCIS - which has a 100% cure rate by definition - into the statistics pool with invasive cancer is misleading.   I think the last paragraph of the article sums up her many complex points well. She is against the lack of information we have to this day re how to best tell who is most at threat of metastatic disease.  We don't know so well what to do with DCIS.  That's a fact from the medical community that she quotes.  The 'establishment'-whether it's Komen, sloppy press, etc. conflates statistics so it appears that "more" women are being "saved" by early detection, but in fact just as many people are dying, and there's real questions as to whether some of  those 'saved' early needed saving. Now none of that is meant to threaten anyone's choices about their treatment. I think every woman who has gotten a BMX because of DCIS has made a fine decision, and if they decided not to, on the reocmmendation of their doctor, that's a fine decision too! I don't think Orenstein is judging any of that either: she is judging what we don't know about DCIS, and early stage cancer: which ones  will spread aggressively, which ones (the article said that studies estimate as many as 25% !!) go away on their own with no treatment! She's angry that we know so little about the disease at this point, depsite the money raised, and that nothing/no  (or little) attention goes to Stage 4 , reasearch, and cure. Instead, it's all 'pink ribbons' and misleading stats on mammograms 'saving' lives when that's just not true.  She is separating out the fact that some individuals are 'saved' by mammograms, vs the misleading stats that SO MANY are saved. She acknowledges that a mammogram may have saved your life, and says that it's possible a mammogram saved hers, but we can never truly know--she is critical of the fact that we have NO WAY of knowing if we are saved or if we were never at risk -- until we die of something else (hopefully). We just don't which side of the coin we are on with our IDC's, DCIS's, ILC's, and LCIS's.... whether it is a cancer that would go away on it's own untreated or whether it can grow aggressively and metastatsize.  And THAT is what she is critical of, along with Komen- that so little to date is known, and the misleading Pink Ribbon campaign.

I hope this makes sense. ! 

And one more thing! If I read about another radiologist telling us how "valuable" the lives of women who are aged 40-50 are, I am going to vomit! EVERY WOMAN'S LIFE IS VALUABLE AND ALL DESERVE BETTER. I apologize for shouting.

I understand re DCIS that it is 100% curable by definition until it isn't: and who can ever say safely when/if that fine line will be or even is (our limited screening modalities which can be wrong) crossed?  Which is why, of course, anyone who took an attitude of 'wait and watch" would be, in my opinion, playing russian roulette. It is DCIS until it isn't, and once it isn't, you run a risk of metastasis ie it is 'invasive'. I get it! I've had Adh, dcis, and invasive! I've had mammograms that haven't seen anything or noticed anything amiss even though it was, it's all happened under 50, I know! 

Thanks vr. yes, more succinctly, Orenstein's point is about mammograms. And mammograms discover alot of indolent cancers, low risk dcis (along with other things more high risk) but the lower risk dcis and invasives skew the numbers to give a false sense of 'progress' and false sense of security to women.  And of course, mammograms miss 20% of real invasive cancers, like they missed mine, and I bought into the mammogram campaign hook line and sinker. NEVER OCCURRED TO ME that I should do other screenings like u/s or mri...thank god mine was discovered when it was....I wrote the doc who gave me  an MRI a "you saved my life' letter but of course we don't really know if my life was saved until I die of something else!  And my oncologist told me we are all by necessitiy overtreated...and as there is no cure for metastatis I'm glad I was overtreated, but well darn it that's what Peggy is po'd about and we should all be. what a waste for everyone including our health system.  Let's get the $$$ spent where it should be: research and cure.