Category Archives: DCIS

Is there a trend away from aggressive treatment?

13948I haven’t written in awhile on DCIS because I have not seen anything new lately, but recently, a well-publicized article caught my attention. While the article focused on the mammogram debate, it also noted that there is new thinking on the DCIS front.

I looked into this. There is nothing very new, but there is a seeming trend towards reconsidering extreme options for treating DCIS. I read another article in the Baltimore Sun titled Doctors Seek to Scale Back Treatment for Common Breast Cancer Diagnosis, which emphasizes the idea that DCIS rarely causes harm, but it can turn into breast cancer. The author notes that DCIS is sometimes referred to as stage-zero cancer, or pre-cancer, and again, this concept is nothing new. However, the subject of risk came up. Do we want to treat a pre-cancer as radically as a full-blown cancer? Studies are cited, and the article includes quotes from physicians, including Dr. Esserman. It is a good article that visits the nuances of decision-making, and why it is still so difficult to know what to do. But does it really point to a new way of thinking? The short answer is, not really. The topic is still very controversial, but with headlines like this, there is a suggestion that perhaps the community is looking into the difficulty in making decisions for those diagnosed with DCIS. It is a recognition that women aren’t just doing what they’re told. They are thinking about their options.

The article looks at choices, such as the one that Angelina Jolie made. At the time her situation became public, I co-authored a blog post titled Angelina Jolie’s Decision at Everything Noetic on why it was courageous for her to have made that choice. Personally, I would vie for watching and waiting as opposed to taking radical action. Of course, it is easy for me to say. When faced with a 5% chance of breast cancer, I decided to do a surgical, incisional biopsy, a procedure that my doctor assured would have removed the DCIS with clean margins had it turned out to be positive. Truthfully, I don’t know what I would do had things gone a different way. Plus, I didn’t watchfully wait, nor did I do the less invasive stereotactic biopsy. It is hard to know what you would really do in any given situation that has not yet occurred.

When it comes to treating DCIS or a suspicious mammogram, I do not think there are right and wrong answers. I do however hope that future research will support a trend away from aggressive treatment.

Reluctantly Getting My Mammograms

I just had my mammogram a few weeks ago and the results were fine. Whew! When you get the films taken, you just never know what to expect, so it is a good feeling not to have a callback!

I was recently going through some old papers and came across an article by Shannon Brownlee who wrote a”What’s wrong with Cancer Tests?” The article was printed in Reader’s Digest in April of 2009.  In the article, there is a nifty little side bar that includes the suggestion that screening for cancer might be right if there is a family history, if you have a risky mutation, or if you already had cancer. Yet, she suggests thinking twice if you are under 50 or over 70, if you’re frail, and if you are afraid of being harmed by a treatment you don’t need. Most people would fit into the “think twice” category, and people who already know they are at risk would probably be best off screening. I also found a short YouTube video of Shannon Brownlee speaking about Cancer testing. Her approach is well-reasoned. I think we all have to think hard about whether we want to be tested, the risks of being tested, and the risks of not being tested.

This blog that focuses on DCIS is about the choices we have to make when presented with questionable mammogram results, and it also delves into making general screening decisions. During my recent screening for example, the technician took two extra films because they were not perfect and she prefers to do extras rather than take a chance of a callback because the doctor is not sure. So right there, there is more radiation exposure just to avoid the potential of a new set of films.

I guess my strategy now is a bit passive-agressive: get the mammogram but delay it as much as my comfort allows.

And I think for many of us–myself included–we only have so much time in the day to explore these things. When it comes to critical decisions, we do the research, but when it comes to screening, we tend to rely on the judgment of our health care professionals and kind of what everyone else is doing. My experience with just following the rules did lead me to a point where I had to do the research, and that was the inspiration for this blog.

I  will continue to update my story and add news about DCIS and breast cancer where I find it. In the mean time, don’t hesitate to pose a question. I would be happy to research and write about any relevant tangents. I hope that in some way I have helped people looking for information as they make incredibly difficult choices when exploring their options regarding breast health.

An Update on this Blog

In my last post–which was about five months ago–I announced the Annex, a paper.li experiment that I took down today. I found it rather tedious and not very helpful, but I just wanted to provide an update on that.

I have not written much because frankly, there is nothing to personally report and there is nothing on the breast cancer front that has caught my attention. Right now, I am focusing much of my energy on another project and you can find out about that here: Everything Noetic.

I am interested in maintaining this blog because I still get quite a few hits and people use the links, and I feel I am helping by doing nothing more than keeping this alive. However, if anyone has suggestions, or can offer valuable links on DCIS, I would truly appreciate your sharing them.

A quick update on my breast surgery: the healing took longer than I anticipated. I was surprised to learn that the lumpiness after surgery would take months to subside, not days or weeks. My next mammogram should be around September so I will certainly update then. Until then, or until there is something relevent to blog about, I wish everyone a good summer and  lots of luck with whatever medical issues you are now facing.

My Conclusions So Far…

When I cracked my eggs one morning last month I noticed they were stamped with pink ribbons (really), and then I caught part of the Giants game that was adorned with pink ribbons, and I thought, is there any industry that does not get on the pink ribbon bandwagon? I mean, we are aware.  I think we are very aware already, and it seems silly that the Giants were wearing pink socks that day.

So what does being aware really do? We are aware of the mammography guidelines, but we aren’t aware of a lot of things, which is why there are unnecessary biopsies and unnecessary surgeries, and why there are women who do not have the treatment they need in time. So we need to be aware of our choices and what we should be doing, but not that breast cancer exists. We know about breast cancer, but we don’t really know our options.

There are two sides to this issue: one is that there is hysteria, hyperawareness, a lack of real knowledge on the subject and overtreatment, but then there is the other side. What if we really are catching it early?

Here is what I have concluded after researching the various methods of tracking microcalcifications: there is no way to know if an aggressive form of DCIS lurks without biopsy. Although the chances of having an aggressive form of DCIS is miniscule when going by the percentages, a surgical biopsy can eliminate that “what if” entirely. On some level, it seems like overkill because no one will ever know if the bits of tissue would have gone on to become a cancer, but there really aren’t any protocols in place to watch and wait.

Those who call for active surveillance have not come up with a proper method. Thermography could be a good way to montior breasts, but it  is still rather controversial, and I think more research is needed–or at least more round table discussions so that all the experts can hash it out. Dr. Susan Love’s website says that microcalcifications can only be seen by mammogram. If that is the case, then following them with thermography that monitors breast changes  may not see a cancer until it has gotten too big. At least, that is Dr. Love’s conclusion.

I can see why there is controversy. Some doctors see thermography as a way to monitor breast health, claiming that it can detect breast cancers years before they arise, while other doctors claim that only mammogram can detect these early cancers. I don’t know the truth. In everything I have read, I can’t figure which side is correct. The conventional doctors claim that thermography has never been proven to find cancer early, while supporters say not only can thermography find early IBC, but it is much safer than the mammograms that can actually cause DCIS to spread.  Following up with mammograms is really the only option aside from biopsy, but most doctors will not condone that with a BIRADS 4 rating anyway. Plus, it’s not a great solution.

I have read that the aggressive type of DCIS can grow quickly. When doctors tell us not to wait six months, I’m thinking, maybe they know something I don’t. DCIS can change at any time, and we can’t be screened daily, weekly, or even monthly. Living with DCIS is kind of the same risk as keeping all your money in a 401K when you are very close to retirement. You just don’t know when the market will crash.  You just don’t know when a noninvasive cancer will become invasive. Not finding it by not looking for it is one solution by I think we don’t yet have the data to support that position.

In the end, the decision comes down to risk and it is a valid argument that we can live with the risk, but if the risk of biopsy is not great, why not eliminate the cancer risk completely?

Now, there are risks associated with biopsy too, and pain, and time off from work, and those are things that are important to keep in mind. If there is only a slight risk that you might have DCIS, and there is a slight risk of needle track seeding with the stereotactic biopsy, why even bother? It is a valid question. With microcalcifications, some of those types of biopsies fail and plus, you have the risk of actually spreading a cancer, so why do something that can actually harm your body?

That is why I see surgical biopsy as a good option. (Here is a wonderful page that goes through all biopsy options and provides a thorough explanation. This is from a site written by a nurse and survivor).

As far as the DCIS controversy is concerned, I don’t know if they are catching a cancer early, or they are doing too many biopsies. It is one or the other, or maybe something in between. I do know that there is controversy and confusion, but we still have decisions to make.  I do think we can agree that we are aware, aware of breast cancer, and aware of some treatments, but there is a lot we don’t know still.

In the end, no test can really discern what the microcalcifications are with the exception of biopsy. And with all the hysteria surrounding breast cancer, it is hard to ignore anything they find. As I have heard a number of critics say, if they find something, they have to biopsy it. So true. But I’m not sure that not looking is the answer. I am hoping current trials on DCIS/suspected DCIS will yield some real results that the mainstream medical community can live with. Until then, we really have very few options.

Thermography Provides An Alternative for Monitoring Breast Changes

I listened to Dr. Christiane Northrup‘s Hay House broadcast on October 5th . The subject was breast health. Her guest was thermographer, Dr. Phllip Getson. The discussion centered on breast health in general, but there was a focus on thermography as not only an alternative to mammogram, but also as a way to monitor DCIS!

According to Drs. Northrup and Getson, thermography is a better way to monitor breast changes. It can pick up changes seven to ten years sooner than mammography. It is also very safe. Dr. Getson emphasizes the safety aspect as he explains that it can be performed every day, it can be done on pregnant and lactating women, and children will not be harmed by it. Dr. Northrup adds that many doctors do not recognize the value of thermography.  Dr. Northrup has referenced the DCIS controversy in several of her published books, including Women’s Bodies, Women’s Wisdom.

Dr. Northrup did talk about DCIS quite a bit, noting that a study of corpses of women in their forties suggested that 40% of the women studied had DCIS.  Yet, these were undiagnosed cases. In other words, when they were alive, the women did not know they had it. Northrup concludes that DCIS is something you die with, and not something you die from. Also reported was a 1995 Lancet study noting that DCIS increased 328% in 12 years, and 200% of the increase was due to the use of mammography.

Dr. Northrup talked about the issue of microcalcifications, and that most doctors feel the need to test them further, often with a biopsy, but that 80% of the time they are benign and goes on to explain further: microcalcifications are present as a result of chronic inflammation in the breast; this is one of the big issues related to mammography; once a doctor finds something, he or she is required to look further; reported data shows that the result of treatment of microcalcifications created more trauma for women; microcalcifications can sit there and be harmless, and you can leave them alone.

Northrup says that DCIS is not harmful. Yet, it must be monitored. Suggested is thermography of the breasts to make sure nothing is growing. If diagnosed DCIS is not generating heat and not changing, it was explained that you can be less aggressive with it. Northrup remarked that many experts believe that DCIS is not a cancer at all, and so many women are being terrified into surgeries that they do not need.

The doctors agreed that DCIS does have to be watched, but it can be watched with the use of thermography. The thermographer looks for inflammation. If there is inflammation,it was explained, then treat the inflammation.  Northrup says we have created a nation that is terrified where every single one of us is a sitting duck, but this is a manmade idea. She implores the listener to  stop the insanity.

I totally agree. Dr. Northrup has vocalized these sentiments before and where she stands on DCIS is no secret. It is the minority position, but it needs to be heard.  Further, much of the information in the broadcast can be corroborated with other sources. While I have heard much of it before–and I even know a bit about thermography, the detailed information provided about the technique and its usefulness in montoring DCIS is something new to me. Thermography in fact can be an avenue that women may take who do not want to be endlessly monitored by mammograms that are potentially harmful and not as accurate. I will certainly do more research on thermography.

Both doctors talked about  prevention in the form of supplements to enhance breast health, as well as changes in diet; there was an emphasis on avoidance of sugar. There was a sense that changes in the breasts are not designated to become cancer and lifestyle changes can help to prevent this from happening.

The most important thing I got from this broadcast is that if you are diagnosed with DCIS, you can use thermography as a method of active surveillance. I think there is a lot of wisdom there. First, do no harm, but do follow up. Thermography is not harmful and it provides a lot of information. The only drawback is that while it is an excellent tool, the insurance companies–well, they love the mammogram so they may not pay for the thermogram. It is controversial, but I’ll take something that is completely not harmful over radiation, biopsy, or surgery. Still, I do feel the need to research this controversy further. I am hopeful that thermography or some other alternative will provide help for the millions of women who endure countless mammograms and derive so little information from them.

Is there a good case for Early Intervention?

The present thinking is to treat DCIS early, but there are really no studies to back up this manner of thinking. It is defensive medicine at its worst. Take a look at Part 3 of a wonderful interview with Dr. Laura Esserman who makes a case for possibly not intervening even when DCIS is discovered. It is an enlightening and refreshing take on this controversial issue.

Can Suspected DCIS be treated by Watchful Waiting?

While most doctors do treat DCIS with surgery, there are some who see watchful waiting as an option.

Thanks to this month’s issue of More Magazine, an article by Nancy Smith entitled “A Breast Cancer You May Not Need to Treat” provides the latest information on DCIS. In it, a handful of doctors who advocate for the watchful waiting approach are interviewed and that part of the piece appears on page 4.

It  should be said that while some doctors believe that not taking drastic measures, or even having a biopsy, is possible, it does not seem to be typical. That is, most doctors who see something awry on the mammo will probably advocate for biopsy, and if something turns up there, well, the protocol says to treat it like invasive breast cancer.

It should be emphasized that when a doctor says that one should watch and wait, it should not be construed as “do nothing” and one should not get the impression that everything is fine. Monitoring is key to watchful waiting. It means that you have your mammograms or sonograms or whatever is recommended to make sure that everything is under control. In other words, what the doctors call active surveillance in the Smith article means that you take an active role in watching the cells. You don’t run the other way, terrified of getting the next mammogram. You wait with optimism, and reverence for the process. You listen to your doctors. It seems to be a non-invasive way of potentially saving your life.

Should you be tested for breast cancer?

The answer to the question posed by the title of this blog is well, yeah, of course. On some level, there should be a screening process whether it is assessing risk factors or having yearly mammograms or going to a primary care physician for an examination.

Yet, the title of this blog is really there because this post will discuss material from the book by Dr. H. Gilbert Welch called Should I Be Tested for Cancer?

I read the entire book several years ago as I became curious about cancer screening tests. In the book, Dr. Welch suggests that many cancers found during the screening process are small and slow-growing, and that the dangerous, fast growing cancers are the kinds of things that cause symptoms and are generally not caught during a screen anyway. That is just a generalization. Many different tests are taken into consideration and in fact, a case is made for certain screening tests. If you are interested in the science, pick up the book. It was published in 2004 but it’s an interesting read. Also, in looking for more material, I noticed that Dr. Welch co-authored a 2011 book titled Overdiagnosed that also contains information on DCIS and breast cancer.

The reason I am blogging about this is that the author has a section on breast cancer in the book Should I Be Tested for Cancer?, and focuses on DCIS. He writes: “Because the idea of simply ‘watching’ a small breast cancer is sacrilegious in our current clinical culture, DCIS is almost always treated (with mastectomy, lumpectomy, or radiation). We therefore know very little about the dynamics of this emotionally charged cancer” (58). Dr. Welch reports on studies of women whose biopsies incorrectly came back negative when they actually had DCIS; the result of some of these studies suggest that DCIS does not often go on to become invasive breast cancer. Later, Dr. Welch claims that for the most part, DCIS is pseudodisease. He therefore concludes that watchful waiting could be a reasonable approach for women diagnosed with DCIS.

Dr. Welch is quoted in a 2008 article about DCIS. The article entitled “Fears of Recurrence Linked to Anxiety After DCIS Diagnosis” is quite interesting and includes observations and recommendations.

Welcome to this DCIS Blog

Hi. As soon as I titled this blog, I had a good number of hits. Indeed, people are hungry for information on DCIS. Please be patient as I have just begun. I will start with an article titled Prone to Error published in the New York Times last year.

There are so many errors made trying to save women from breast cancer that it brings into question the validity of going on the investigation in the first place. What is the purpose of finding cancer early if diagnosis is full of holes? Most of the examples come from small communities where there are inexperienced pathologists, but even when one receives a DCIS diagnosis from the best pathologist in the world, the diagnosis is still an opinion.

My question is, why not wait? Why not wait to see if the tiny bits of calcification actually grow into something before engaging in last resort treatment, or any treatment at all? Why attempt to even diagnose DCIS if a woman is okay with watching and waiting? These are the questions I am asking, and I know that it is easy to say that a case of DCIS might grow into cancer, and while cure for DCIS is like 98 or 99%, the problem is that even if the DCIS never comes back, it may never have gone on to become invasive breast cancer in the first place. It is a conundrum. I get that. But what I don’t get is why women don’t have a choice in the matter, given the lack of knowledge on the subject. Why can’t the doctors say, “we don’t know what will happen. We don’t know whether these cells will kill you, or won’t do anything at all. Given that, what do you want to do?”