Where You are Screened May Matter

When I was at the my surgeon’s office, I picked up an NAPBC leaflet describing the benefits of NAPBC accreditation. NAPBC stands for the National Accreditation Program for Breast Centers. What it means is that a center that is accredited has gone through a rigorous process to assure that their standards meet or exceed what several prestigious industry organizations demand.

While a center that is not accredited may be doing an excellent job, the centers that are accredited have a stamp of approval, so if you are deciding between Center A and Center B, you might want to vie for the one that has accreditation.

To find out if your breast center is accredited by NAPBC, check their map of facilities in the United States.

Advertisements

My Surgical Excisional Biopsy

So I decided to go for the surgical (excisional) biopsy, just to see, just in case it was DCIS, based on the conclusions I relayed in my last post. I was lucky. The results showed no sign of cancer.

The biopsy itself was not painful nor was the wire placement procedure I needed prior to the surgery. I am relaying this in case someone else needs to hear it. I read my share of horror stories before I went in. It’s probably nice to know that a surgical biopsy can be relatively easy.

While I waited for the results I did look at BC websites and discovered stories of women who did not biopsy microcalcifications. Either their doctors told them it was ok to wait, they never got the initial worrisome result, or the idea that they should have a biopsy was never revealed to them. And they ended up with invasive breast cancer. I’m sure these women only represent a small percentage of those who might have prevented cancer had they been biopsied, but still. Their stories are real. So while waiting for results, what I found supported my choice.

Now I am back to square one. After my breast is completely healed–it takes awhile– I will be back to normal. Now I wonder about things like soy, HRT, how breasts really should be monitored, and all that. While my risk of breast cancer is not higher than it was previously, I never really thought about risk factors much. I was more afraid of being overtreated than actually having a disease.

Objectively, I am one of the many women who have had what critics refer to as an unecessary biopsy, but I can’t help to feel that I’m glad I did.

It’s hard to escape the dilemma. Either you look for it (cancer) in the most accurate way possible, or you don’t and hope for the best. For me, I think I will continue to keep up to date on the latest research because as surely as I make a decision on how to proceed, a new study will come along to change my mind.

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.

Have You Heard about Elastography?

I just discovered that there is a test that can be done that is painless and can help you prevent biopsy!   For a BIRADS 4, the only test is a biopsy,  right? But  I just found something else.

The test is called Elastography. One article by Beth Orenstein entitled “Hard Decisions — Ultrasound Elastography Seeks to Help Characterize Breast Lesions and, More Recently, Throughout the Body” notes that if you have a BIRADS 4A for example, you can get this test. This additional test that is not invasive and not painful can provide the doctors with information to determine whether or not a biopsy is recommended.

So why don’t doctors go there right away? I don’t know.  I just came across this. But I suspect it is because it is new, it is not available everywhere, doctors don’t really trust it, or they feel that the biopsy is the gold standard. Of course, biopsy is the only way to know for sure if what is seen is cancer, but again, biopsy is not completely safe, so tests like this are really valuable. A hopeful clip on YouTube provides a story of a woman who avoided biopsy when her physician (who authored a recent study on the technology) used the method. While this technology may work in some cases, it is probably not a solution for microcalcifications.

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.

Some Doctors Do Understand

Sympathetic doctors are not hard to find. Many doctors do have a bedside manner, they are sympathetic, and they make us feel good. We have confidence in them. But the truth is that while sympathy can be dished out quite readily by physicians with charismatic personalities, their advice may be influenced by the current thinking, which is not always the best thing for us. That is, there is a lot unknown, and doctors fear taking a leap by going with their gut, so they vie on the safe side. You may be thinking, that’s a good thing. Doctors should not take unnecessary risks.That seems logical, but what about the risks that interventions come with? Screening, surgery, radiation and chemotherapy are not risk-free choices. For many conditions outside of the breast cancer realm, the cure is sometimes worse than the disease, so even with a diagnosis of cancer, patients need to exercise caution and not hurry into treatments just because one doctor makes a recommendation.

Dr. Laura Esserman is one doctor who does understand the issues and more than merely sympathizing, she understands the frustration that patients experience. Interviewed at the San Antonio Breast Cancer Symposium, Dr. Esserman speaks about the problems that patients experience when they are diagnosed and treated. This is an excellent video to view whether you are just curious about the mammogram controversy, the difference between high and low risk cancers, and the importance of clinical trials.

In the video, Dr. Esserman announces the creation of the Athena Breast Health Network in California and recommends that patients be proactive and look into clinical trials when they are faced with decisions about breast cancer treatment. She refers listeners to breastcancertrials.org where breast cancer trials around the nation are listed.

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?”