Desiring to 'watch and wait'

There are studies that are being done on watchful waiting, but at this point there's nothing out there yet that would suggest that this is a safe approach.  There is one study that I will try to dig up for you that showed a fairly high rate of invasive cancer development for those who undertook watchful waiting, but it was a very small study.

The problem at this time is that medical science hasn't yet figured out which cases of DCIS are concerning and are high risk to develop into invasive cancer, and which aren't.  Generally if there is a larger area of DCIS, if it is high grade, if there is comedonecrosis, if the DCIS is multi-focal.... those are indicators that an area of DCIS is more likely to become invasive within a shorter period of time.  But some of those cases of DCIS do remain DCIS for years, while other cases that don't appear to be as concerning develop into invasive cancer more quickly.  So there obviously are other factors at play.  There have been many studies done over the past few years on the biological factors of DCIS, and we are getting close to knowing which factors might be important, but if anything, there have been too many different possibilities - so there isn't yet a clear answer. 

What all that means is that nobody can tell you if your DCIS is a case that will become invasive within a year, or whether it will remain DCIS for 20 years.  

The other problem is that right now the technology is not available to be able to tell, from imaging, whether an area of DCIS is evolving to become invasive.  Those changes take place at a microscopic level and simply can't be detected by mammograms or MRIs.  This is why in about 20% of cases where DCIS is found in a needle biopsy, and where a mammo or MRI appears to show just calcifications (that generally are a sign of DCIS), in fact once the surgery is done, some invasive cancer is found. I had 1mm of invasive cancer hidden in the middle of over 7cm of DCIS. Mammo and MRI imaging isn't precise enough to show something like this. And just that 1mm of invasive cancer gave me a 10% chance of having nodal involvement, and therefore a much more advanced diagnosis.  Fortunately my nodes were clear, but this points out how quickly a diagnosis of DCIS can become a much more serious diagnosis of invasive cancer. There's just no way to know from the imaging. If someone has just 3mm or 4mm of HER2+ invasive cancer hidden in the middle of an area of DCIS, suddenly you are dealing with a very serious life-threatening cancer. I've seen this happen several times with women on this board who came here thinking that they had a harmless diagnosis of DCIS. 

If you have a mole that appears suspicious, your doctor will recommend that it be removed.  It may turn out to be benign, or it may be just a precancer, but few dermatologists would suggest that it be left and monitored until you know that it is cancer, and removed only then. If the mole is removed and it is precancer, then it will be good that you'd had it removed - you will have avoided a diagnosis of cancer.  Moles are on the skin - they are fully visible. DCIS is hidden inside the breast, so it's harder to monitor, but it's basically the same concept. From my standpoint, even through DCIS is harmless, it's better to get it out, because there is simply no way that you or your doctor will be able to tell if that microscopic biological change takes place and all of sudden, you have invasive cancer. 

I'm not a fan of over-treatment, so certainly I can appreciate that you might want to try to avoid rads or Tamoxifen.  Some women are happy to follow-up their surgery with these treatments; other women opt out.  That's certainly a much larger gray area than whether or not the surgery itself is a good idea. 

Natty, please do share.  If you have good information on the watchful waiting approach for DCIS, I would certainly be interested in it.  Offering to provide that information only via PM suggests that perhaps you don't want whatever you say to be questioned or followed-up upon.  

I hope you will provide more information here, but in the meantime, let me try to name some of the experts that I believe you may be referring to. 

Dr. Laura Esserman of UCSF is one of the leading voices behind the "watchful waiting" approach. She is very well respected and I am very interested in her work, but there are a couple of statements she's made in the past that have raised the red flag for me:

" With DCIS, the "bulk of what we find is not high grade" Dr. Esserman explained to Medscape Oncology in an interview. She noted that only high-grade DCIS is likely to progress to invasive breast cancer....."If it doesn't look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did," Dr. Esserman said. "  The problem is that this is not true. I can provide dozens of research studies that show that grade 2 and even grade 1 DCIS do develop into invasive cancer. And unfortunately you can find lots of women on this website who've had that experience.

" Less than 5% of DCIS turns out to be "something else," including invasive cancer, said Dr. Esserman. "  Also untrue. Study after study have shown that on average, 20% of needle biopsies that show only DCIS result in a final diagnosis of IDC once all the surgery is done and all the breast tissue has been analysed.  I honestly don't have any idea where she got that 5% figure - perhaps she was referring only to grade 1 DCIS. 

Take Carcinoma Out of DCIS and Ease Off Treatment  writinghelps, this article includes the above quotes from Dr. Esserman along with an interesting and I think fairly even-handed discussion about the issue of over-treatment of DCIS. 

Another doctor who promotes the watchful waiting approach for DCIS is Dr. Joseph Mercola. He is a family doctor.  His interests - and his recommendations to pass on traditional medicine - go well beyond breast cancer.  He has his supporters, and there are others who consider him to be a quack. I will only say that he has no apparent education or background on breast cancer. 

In addition to the words coming from these doctors, I've searched on the government Clinical Trials website to see if I could find any DCIS studies that Dr. Esserman is currently doing, or any other studies on DCIS and "no surgery".  I couldn't find anything.  Others are welcome to try:  http://clinicaltrials.gov/ct2/search/index

I happen to believe that DCIS is often over-treated.  I hope that we get to the point where one day we have the screening tools available and enough knowledge about DCIS biology that doctors are able to safely recommend to some of their patients that watchful waiting is a good and reasonable and low risk approach.  I simply don't think we are there yet.  Natty, if you have information that suggests otherwise, I would love to see it. 

By the way, I don't push for lymph node dissection.  Quite the opposite, in fact. 

writinghelps,

As you can see, I'm entirely new here. First let me say a HUGE thanks to all the contributors.  It's so unbelievably helpful, informative and empowering when you share your knowledge and experience with those of us who are taking our first steps into this club we never asked to join.

I'm in a similar predicament as you, newly diagnosed and 1 week out of lumpectomy, sorting through the options. I'll let the veterans give you the knowledge but I will say all the options my BS presented still feels like an aggressive, full court press (ie, you need a re excision for better margins, you will need radiation, you will need Tamoxifen, you will need a genetic consultation and genetic testing, and then she took a breath...). And for me that is the predicament. I have DCIS, but just a tiny, tiny bit of it, 2mm, single focus, good margins, but 1 margin which we are going back in to clean up. I have agreed to that. But it does feel like she has thrown the kitchen sink at me for something that I understood to be non-life threatening.

I also believe it is what MDs are trained to do. Identify the problem, use their tools to eradicate it and then use anything else to make it stay away.

And by reading your post, I learned some good stats from Bessie which help me furhter undersand the unpredictability of DCIS. Perhaps this is why some do throw the kitchen sink at it?

After a few days of being extrememly pissed off about all this, my mantra about DCIS has softened today.... I am lucky. I am grateful. I am satisfied with my treatment...

and you're right, #writingdoeshelp

I agree with Beesie. In fact, before going to the dr, when I thought my lump was just a fibroadenoma, I was prepared to insist on surgery. Call me old fashioned, but my feeling is that there is no need to have things inside you that could turn dangerous and that can easily be excised.

She, what crappy luck you've had!  It sounds as though your breast tissue likes to make breast cancer. 

A question for you.  Were your doctors certain that your second diagnosis, the IDC that developed after the DCIS, was in fact a recurrence and not a new primary? I realize that it's often impossible to ever know for sure, but with wide margins, rads and some time on Tamoxifen, plus with 8 years in between diagnoses, I would think that there's a good chance that the IDC might have been a separate diagnosis from the DCIS, a new development of cancer.  Do you know if the IDC was found right at the edge of the DCIS excision area? Did your surgeon and oncologist believe it was a recurrence, or did they raise the possibility of it being a new cancer? I always find these sorts of situations to be interesting, because it calls into question whether the treatment for the original diagnosis of DCIS was successful or not.  A recurrence would mean that it wasn't, but a new primary would mean that it was. I wish that there was a better and more certain way for doctors to determine this.

All that aside, I agree with you that with your history, "watchful waiting" would certainly have been very high risk.

Ah, that's interesting that it was considered a new primary.

Good luck with the AIs.  Hopefully this most recent round of BC is your last round of BC, and you never need to deal with it again.

writinghelps, you raise an interesting point.

I don't think there is any standard on what "watchful waiting" means. It's just not common enough that there are standards or any sort of consensus. Some of the articles I've read suggest that watchful waiting should include treatments such as Tamoxifen. Dr. Esserman is a strong proponent of Tamoxifen, and I believe that for her, "watchful waiting" includes taking Tamoxifen.

For others, "watchful waiting" includes making major dietary and lifestyle changes. What's not known is whether this would be successful for any one individual.  Reading this board, you come to realize that many women who are extremely healthy - athletes, vegans, etc. - develop breast cancer.  There are some studies that suggest that some lifestyle and diet changes may reduce the risk of breast cancer developing, but there are lots of unknowns related to that, specifically:

* If you already have DCIS, will these dietary/lifestyle changes stop the DCIS from continuing to develop and becoming IDC, or since DCIS has already developed, is the cat out of the bag?

* While there are changes that can be done to reduce one's risk, the factors that we can personally affect are almost all 'low risk' factors, as compared to the 'high risk' factors that we have no control over (being female, getting older, having dense breasts, genetics, age of first menstrual period, etc.. etc..). This Breast Cancer Risk Factors Table identifies whether each risk factor confers a strong increase in risk, a moderate increase in risk or a weak increase in risk.  Most of what we can change are the "weak" factors. So is this enough to avoid a diagnosis?

* The answer to that last question, "So is this enough?" is probably "Yes" for some women but "No" for other women.  And therein lies the problem.  It's well understood that we are not all affected by risk factors the same way.  This is why one woman with no apparent risk factors, someone who is a vegan and very athletic and in great health, might develop breast cancer, and another woman, who is overweight, drinks a lot and never exercises, might never develop breast cancer. So for this first woman, what changes can she make to reduce her risk, if she is already "doing everything right" to begin with?  And for this second woman, if she is doing all the wrong things but she hasn't developed breast cancer, might it be because those particular risk factors aren't risk factors for her?  For example, more than moderate alcohol consumption is said to confer a weak increase in breast cancer risk. But this doesn't mean that every woman who consumes more than a moderate amount of alcohol is affected. Some women are more strongly affected by alcohol, some are more weakly affected, and many women aren't affected at all. 

That's the thing.  Among the very long list of breast cancer risk factors and known carcinogens, some affect you and others don't.  And there's no way to know which are which.  So you could make dietary and lifestyle chances and it might reduce your risk. Or you could make those same dietary and lifestyle changes and it might not affect your risk at all.  Is being overweight one of your risk factors?  What about alcohol consumption?  Or lack of exercise?  Or red-meat consumption? 

What unique combination of risk factors is your body's trigger to start the development of cancer cells in your breast? Start with your genetics (family history of breast cancer, breast density, age at which you started your periods, age of menopause, etc.), then move on to include your life choices (childbearing, breast feeding, etc.), lifestyle choices (birth control pills, HRT, exercise, etc.) and your dietary choices (meat, alcohol, etc.), and finally add to that all the environmental factors (what toxins and carcinogens were you exposed to as a child and what are you exposed to now).

Without knowing the answer to this question, I don't think there is any way you can know if lifestyle changes will have any affect on your risk to develop breast cancer or whether your DCIS will develop into IDC. And unfortunately, I don't think it's possible to know the answer to this question.  Of course, it's good for your overall health to do all the right things, so there is no harm in that and maybe there will be a benefit in terms of breast cancer risk reduction. Interesting question.

Writinghelps,



Eating more veggies and exercising more (lifestyle change examples) won't stop what is already in your body: a precancerous spot. I hope you had it taken care if surgically.

"I don't have the courage many women have just to have a lumpectomy because it tends to come back.  My Aund so far is an exception after 23 years, but still the statistics aren't that great to not have a reoccurance. "

gracewriter, I have to comment on your statement because it is so totally untrue. Most women who have a lumpectomy do not have a recurrence.

The Early Breast Cancer Trialists' Collaborative Group (EBCTCG) evaluated studies that included over 10,800 women who had lumpectomy surgery after a diagnosis of breast cancer.  Over a 10 year period, the recurrence rate for those who had a lumpectomy + radiation was 19.3%.  This means that over 80% of women did not have a recurrence.  Among only those women who were node negative, the 10 year recurrence rate was 15.6%, meaning that almost 85% did not have a recurrence. http://www.ncbi.nlm.nih.gov/pubmed/22019144

And here is a smaller study that followed 1,851 women for 20 years.  At 20 years, the recurrence rate for those who had a lumpectomy + rads was 14.3%, meaning that over 85% did not have a recurrence. http://www.ncbi.nlm.nih.gov/pubmed/12393820?dopt=Abstract

There also have been study after study showing that the survival rate is the same for those who have a mastectomy and those who have a lumpectomy + rads.  In fact the most recent study on this suggested that those who have a lumpectomy + rads may actually have a slightly higher survival rate as compared to those who have a MX without rads. 

So the good news is that your aunt's experience is not an exception.

Beesie, thank you for your thorough comment clarifying LX vs MX. While I am for the most part at peace with my decision to do LX +rads vs MX, statements like the one to which you responded make me cringe. I can see where in theory it would seem that LX isn't enough, but science and research has shown that it certainly can be. And unfortunately there are no guarantees, not even MX.



Thanks again for your reply ... I wanted to write something myself but didn't have the words. :-)