Category Archives: breast cancer

April is the New October

IMG_1350The last time I had a mammogram, it was in October of 2015. I was ambivalent about whether I would go two years or one year, as there is a debate going on about that. October is the traditional month for breast cancer awareness, and when I happened to have my last screening, but I waited until things thawed out and went for my mammo on a pretty spring day.

I didn’t want to go. I had to go all the way into New York City, which takes a long time, and I did not feel like it that day. There were other things I really wanted to do. But I went, and I plan to do this every April now.  In part, the wonderful thing about April is the pretty tulips, and flower gardens, all over the city!

The fight between one and two years for mammo frequency may not be very significant.  We all wait too long for tests sometimes. We push off appointments. Life is busy. There are false positives and we try to avoid those too. And I’ve known women who had perfect mammograms but discovered breast cancer on their own. There are always those stories. And the minimizing of the radiation is a logical reason to wait. But you know what really turned it around for me? My doctor suggested that the motivation behind the new two year recommendation is economic. As a sociology major who studied economic theory, I think he makes a good point.

So who saves money if I go two years? The insurance companies, not me. Mammograms on most insurance plans are free as long as it is the current preventative care recommendation. Think about it. A trend toward reduced care likely hurts the consumer. The new concept threatens to take something away, not add anything of value.

The idea resonated, so despite the radiation issues, I am just going to do it, until research changes that.  There are good points on either side of the issue, but I have to make a choice, even if it is just to stop thinking about it for now!

Later in the day –not anywhere near the hospital–I met a woman and mentioned that I went to the city for a mammogram. She said “good for you” and went on to tell me that she is a breast cancer survivor. That synchronicity was another thumbs up to do this again, same time next year!

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.

Announcing the Annex

Last month,  I started curating a weekly paper at paper.li that I consider an outgrowth of this blog. I am just getting used to the media and am really not sure what I am doing yet there, but I managed to get through several Sunday editions and you can find them here.

While it is a bit confusing, what is good about this project is that every week I am privy to new information about breast cancer. I sift through a good deal of superfluous information, and sometimes it is hard to get a handle on it, but when something is really important, it seems as if I am alerted by many news spotters, and so I feel as if I am truly up to date on the latest in breast cancer research.

Some of the articles have already prompted ideas for topics for this blog. At the very least, I will be well-informed.

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.

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.

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.