Active surveillance for low grade DCIS ?

Ah, quite the controversial topic that you raise!  There's a lot of debate and discussion about this, both among patients and in the medical community.  So let me give you my thoughts on a few of your points:

- has anyone chosen not to have surgery after a diagnosis of low grade DCIS? Yes, but not many women do this. Most opt for at least surgical removal. I'm not sure if there is anyone on the board these days who has done this so I don't know if you will get any positive replies to your question. 

- I don't have any history of breast cancer in my family, nor did I ever smoke.  Sorry to tell you, but that's irrelevant. Only about 10% of breast cancer diagnoses are based on the inheritance of a genetic mutation. And there are zillions (okay, that's a bit of an exaggeration) of possible causes of breast cancer.  Lifestyle and environmental risk factors all tend to be low risk; the biggest factors are ones we can't control, such as the estrogen in our bodies, the density of our breasts, the fact that we are women (that's the #1 risk factor for developing breast cancer), the fact that we get older (that's the #2 risk factor for breast cancer; our bodies are not made to last and over time our cells start to deteriorate).  Many women who do everything right still develop breast cancer.  And most women who do everything wrong never develop breast cancer. 

- I read about DCIS a while back and remembered that it said many women are over treated or over diagnosed . Yes, this is a major concern within the medical community.  However most doctors - Dr. Esserman and a handful of others being the only exceptions - would not consider surgical removal to be over-treatment. Most doctors would consider surgical removal to be necessary. When most doctors talk about the over-treatment of DCIS, they are thinking about women who opt for bilateral mastectomies after a diagnosis of a small low grade DCIS. Or they may be thinking about radiation, and how it is the norm to recommend radiation for anyone who's had a lumpectomy.  These days more and more doctors are moving away from this, telling patients that rads might not be necessary if they had only a small single focus of low grade DCIS and have wide surgical margins.

-  Also I've read that early diagnosis has not improved death rates by breast cancer.  True for the population as a whole, but possibly not true for any one individual. Within the population as a whole, a mortality rate difference of 32% vs. 31.8% (I just pulled those numbers out of the air, as an example) would be considered the same, i.e "no significant difference". But of the almost 330,000 women diagnosed with breast cancer (DCIS + invasive) in North America each year, that "insignificant difference" is 660 women. So while overall early detection hasn't improved survival rates, for any one woman, early detection could be the difference between life and death. And even if early detection doesn't affect an individual's survival, it might make a big difference in the treatments that she requires, i.e. with early detection you can usually avoid chemotherapy, and may be able to pass on hormone therapy and possibly even radiation.  

- I'm particularly not convinced that DCIS can be cured as an oncologist told me because even after surgery it can come back.  Yes, after surgery a local recurrence is possible. The risk depends on the diagnosis (low grade vs. high, single vs. multi-focal, size of lesion), the type of surgery (lumpectomy vs. mastectomy), the surgical margins, the other treatments one might have (radiation, hormone therapy).  In some cases the recurrence risk might be as low as 1% - 2% (after a mastectomy) or just 3% or 4% (lumpectomy + radiation with wide margins for a small single focus of low grade DCIS), or it could be as high as 40% (lumpectomy + rads with narrow margins for a large multi-focal high grade DCIS). Separate from a recurrence, it's also important to know that even after successful treatment, any one of us could develop a new primary breast cancer and in fact the risk is higher than average for those of us who've had a first diagnosis. That might be more what your oncologist was referring to. 

- They also told me there were no studies on low grade DCIS. I wonder why if this is the fastest growing diagnosis?  Not true. There are studies, not large and not many however.  That's because it's hard to recruit women who are willing to participate, i.e. not surgically remove their DCIS.  But the few studies that exist have in fact been done on low grade DCIS - because virtually no one with high grade DCIS would leave the DCIS in her breast.  Here are a couple of the studies:

Outcome of long term active surveillance for estrogen receptor-positive ductal carcinoma in situ.

"An option for active surveillance is not currently offered to patients
with ductal carcinoma in situ (DCIS); however a small number of women
decline standard surgical treatment for noninvasive cancer. The purpose
of this study was to assess outcomes in a cohort of 14 well-informed
women who elected non-surgical active surveillance with endocrine
treatment alone for estrogen receptor-positive DCIS. RESULTS: 8
women had surgery at a median follow up of 28.3 months (range 10.1-70
months), 5 had stage I IDC at surgical excision, and 3 had DCIS alone. 6
women remain on surveillance without evidence of invasive disease for a
median of 31.8 months (range 11.8-80.8 months)."

The natural history of low-grade ductal carcinoma in situ of the breast in women treated by biopsy only revealed over 30 years of long-term follow-up

"The authors report the latest results from a follow-up study, which was
published originally in 1982, of 28 women with low-grade DCIS who were
treated by biopsy only. These women were from a large, prospectively
identified, completely characterized cohort. RESULTS  Eleven
of 28 women developed invasive breast carcinoma (IBC), all in the same
breast and quadrant from which their low-grade DCIS biopsy was taken.
Seven IBCs were diagnosed within 10 years of the DCIS biopsy, 1 was
diagnosed within 12 years of the DCIS biopsy, and the remaining 3 IBCs
were diagnosed over 23–42 years. Five of these women, including 1 woman
who developed IBC 29 years after her DCIS biopsy, developed distant
metastasis, which resulted in death 1–7 years after the diagnosis of
IBC."

- My breast surgeon said in Britain and other parts of Europe they don't treat low grade DCIS. That's not entirely true. There is another way to classify DCIS, which is the DIN grading system, and a few countries in Europe have moved to this. Breast Epithelial Proliferations DIN   Within this system, ADH (a high risk condition) and low grade DCIS are grouped together as DIN1. The normal recommendation for anyone who has ADH (in most countries) or who has a DIN1 lesion (in countries that use the DIN system) is surgical excision. So it's only after surgical excision that often no additional treatment is recommended, or at least no radiation. Sometimes Tamoxifen is recommended. With ADH, the reason why surgery is recommended, even though ADH clearly is not cancer,  is to ensure that nothing more serious is going on. In about 20% of cases where ADH is found by a needle biopsy,  DCIS, or even invasive cancer, might be lurking nearby. The same risk exists for low grade DCIS.

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Personally, I starting to believe that low grade DCIS probably should be reclassified as a pre-cancer and I think over time this may happen. (I hope that a reclassification is not done, however, for high grade DCIS).  But just as the current treatment guidelines suggest that ADH be surgically removed, I think low grade DCIS should be surgically removed.  Because until it's removed, you don't know what else might be going on.  My case is a perfect example. My stereotactic needle biopsy found ADH; as is the norm, I was then sent for a surgical biopsy (which to be honest, I resisted).  My surgical biopsy found lots of high grade DCIS with comedonecrosis (the most aggressive DCIS there is) and a microinvasion of IDC.  So I ended up being Stage I.  Therefore based on my experience, which is not that unique, I would always opt for the surgical removal of DCIS, even low grade DCIS.  But with low grade DCIS, assuming good surgical margins, personally I would stop there and not have rads or take Tamoxifen. 

In the end you need to gather all the information you can and make the best decision for yourself.  I hope that some of what I've covered off helps.

Edited for typos only.

Beesie, from all I have read on DCIS since my own diagnosis, you are as always, spot on. You are the resident expert on DCIS for a reason. Your research skills are second to none. I appreciate your thorough understanding of this type of BC more and more as I read your responses to those who have concerns. This is your best yet if you ask me.

MillyQ, obviously to have surgery or to not have surgery is entirely up to you but please make sure you think long and hard about leaving this in your breast. Lumpectomies are generally safe and simple out-patient procedures for small DCIS lesions and you will be recovered in a day or two most likely (barring any unforseen complications of course) so please consider this option. It may save your life. Whatever you choose, I wish you the best.

Edited to add a question: MillyQ, how do you know the actual size and grade of your DCIS without having had surgery? My understanding is that the actual size and grade is not determined until after lumpectomy or mastectomy, not from biopsy. Not sure if I am right about that, but things changed from my initial diagnosis after my lumpectomy. My DCIS was actually a little smaller than they thought but it was higher grade (between grade 2 and 3) instead of grade 1)

Hi Millie

As having DCIS in 2011 it was thought to be stage 0 with MRI, U/S and Biopsy. I chose to have a lumpectomy and the biopsy after the surgery showed a tiny micro invasion which brought me to Stage 1. From my experience they did not know of the microinvasion until after lumpectomy. My chances were very good for no recurrence but here we are 4 years later and I am now facing stage 3a Her2/neu IDC. Please seek another opinion and think this out good. Best of luck to you. I now wish I made the decision for a masectomy but B/S's I saw did not think it was necessary......Best of luck to you.

Unfortunately AJ and Lucy, MillyQ has not been on the boards since January 26th so she may or may not see these responses. I hope she logs in and reads both of them though because it may help her decide if she did not get the surgery. Hugs to you both and AJ, so sorry about your recurrence!

Hugs to you to April......I hope she does read. Wish I knew then what I know now!

I was diagnosed 14 years ago and never had surgery, because that meant I would suddenly wind up on this treadmill that I felt I did not need to jump on. I had a subsequent MRI that said "it" was still confined to the duct.

I would have gladly taken part in a study, and did look for one, except that there were none that did not involved cutting into the breast for a sample. Forget it.

I think DCIS will soon be reclassified. Keep in mind that when I say DCIS, I mean low-grade DCIS. To me, cancer is invasive. If it's not invasive, it's not cancer.

Yes, the grade is definitely important. I think that is what MJLawe was referring to. A grade 1 DCIS is very different than a grade 3 with comedo-necrosis. The grade 3 would be a much more aggressive lesion than a grade 1 I would imagine which would be a reason to definitely get it out of your breast. Many doctors think that IDC usually begins as DCIS and as such, a grade 3 is a bit farther along in the spectrum. But, not all DCIS, no matter what the grade, will go on to become invasive which is where the conundrum lies. Treat or not treat. Cut or not cut. Rads or no rads. I was a grade 2 so went with treatment. I believe it is cancer and it should not be reclassified. It is an "in-situ" cancer but it is still cancer cells which have not yet invaded the breast, only the duct. I think too many women would opt out of treatment if it is reclassified and that is playing Russian roulette. An informed decision is one thing. To do nothing could be folly for many of the DCIS cases that are diagnosed imho.

Red Sox, you make a really good point about recurrence--if you go out long enough into the future, there will be recurrences even with Grade 1, which is why radiation oncologists recommend radiation treatment for all grades. My radiation oncologist, a researcher and department head, has been doing this research for years, and concluded that there was no safe group, per se.  I asked her this question directly, even though I didn't really ponder the radiation decision for myself as I did have the Grade 3 with Necrosis, etc. etc.  They haven't really studied, well, those who chose no treatment, but they have studied those who had surgery but no radiation, and there is no truly safe group from the current designations, and there are other factors beside grade that help determine recurrence risk.