Author Archives: Rhonda Tremaine
The 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!
I 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.
Some charities simply take things too far. Perhaps the most annoying is the Keep a Breast Foundation’s boobie campaign. Sigh. I hate to come down hard on these creative, well-meaning people who strive to educate and stop breast cancer in its tracks, but I have to say, I am appalled that this female body part is referenced by such an obnoxious term, and I am not the only one who feels this way. In fact, a school district attempted to ban the I Love Boobies bracelet, and others have blogged about the offensive nature of this organization’s focus.
It is also important to note that the pink campaigns exclude men, and men get breast cancer too. This accentuates the fact that the boobie campaign targets women in a sexist manner by exploiting a feature with which the western world is clearly obsessed: women’s breasts.
This unnecessary focus inspired a porn business to take advantage of the trend by holding a boobie campaign of its own. The business sold sexy photos for breast cancer research, but when the pornographers tried to donate the money they raised, Susan G. Komen for the Cure refused to take it. Bravo!
Still, many people are on board with the idea that if it is for charity, anything goes, but I don’t like ice buckets and boobies shoved in my face. You may think it is not a big deal. After all, if a marketing campaign is in support of a good cause, can that lead to harm? I think it can.
Not only is the focus offensive, it misses the point. The goal is optimal health and wellness, not to hang on to a body part at all costs. And breast self-exam –something these organizations are presumably promoting– has come into question as being more harmful than valuable. That feeling your breasts is a simple way to prevent cancer might send the wrong message. Nothing about cancer prevention is simple. It is replete with controversy, choices, and research, and people ought to be more thoughtful about these things.
I do believe that the people behind the campaign are sincere, and I support charitable giving, but I think in a good society we can do better than to cater to the lowest common denominator. The campaigns might appeal to the JackAss fan, but is that truly the target audience? Not only do the boobie and tata campaigns not serve the organizations well, they are an affront to all women who have had mastectomies. These “genius” campaigns offend the very women the organizations claim they are trying to help.
Unfortunately, we live in a world where TMZ is mainstream, and it is okay to degrade and mock other people. In fact, it’s sport in America, and it makes money, but I think it takes a certain kind of moxie to do it when women’s lives are at stake. Yes, I believe a line was crossed here, and ignorance is no excuse.
I can’t believe it is over a year since I posted. I had my mammogram last week, and going to an excellent facility really makes the process easier. When I arrived, I requested that my x-rays be read while I wait, since I have to travel to get to this better than average women’s center. They were more than happy to oblige, and I only had to wait five minutes while one of the three radiologists read them. So I left without the fear of a callback. Once you’ve had callback, you know that getting a routine screening leaves you a bit uneasy until you get the letter saying that everything is okay.
Also, I was asked if I wanted a 3D mammo and while I have not researched this extensively, I did read that it emits more radiation. The radiation in the standard mammogram troubles me, so I told the technician I will stick with the regular one.
I have not done any additional research on the value of mammography other than to discuss it with my doctor. Although I have concerns about this path, I have not yet been able to find a better solution to the problem of this screening. I just don’t want to take a chance and skip it when all the leading physicians and organizations are in agreement on this one thing. Does it cause unnecessary biopsies and does it fail to catch fast growing cancers? Yes, on both counts. But again, there is no perfect screening and right now, this is the only thing acceptable to my doctors so I will stick with it, but I am certainly open to other ideas.
One thing that might help is to go two years instead of one, according to new research. This way, there will be a reduced amount of radiation, but the routine stays in tact. I did wait 15 months–not 12–to get mine. I generally do push the limits for many screens, knowing that guidelines are probably more stringent than they need to be. That annual breast cancer screening is still the norm is suggested by the fact that the technician mentioned my tardiness and asked if I had trouble getting an appointment. I just told her no. Anyway, I am glad that’s over and I will probably do it again in another 12 or 15 or 24 months.
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.
So I had my mammogram in December. I meant to report this right after I had the exam and now it is March! I am barely blogging with the exception of Everythingnoetic.com, a blog I co-author. (If you are interested in my other projects you can find out by visiting the blog).
What I really liked about the visit is the fact that the mammogram and physician visit was done on the same day. I would highly recommend going to a facility where there is no waiting involved. Facilities that do it all in one day are wonderful and I will continue to go this route.
I will also continue to provide sporadic updates. Obviously, my focus is elsewhere because everything was ok, but I have not forgotten about this blog. Although there is very little interaction, I can tell you that for a blog that is inactive, I continue to get a lot of hits. I really like being able to facilitate the dissemination of information that is so hard to find. Please feel free to comment if you would like me to look into any topic about breast cancer and I will do my best to make time for it. Blessings to anyone who finds themselves here struggling with issues concerning breast health.
Finally, this week, two things came up directly pertaining to breast cancer and I found myself talking about this blog. Yesterday, I went to the Mind-Body-Spirit Expo in NJ and met people from a thermography center. At the booth, they handed out some literature on breast thermography and here is a link to a site with more information on the process. I also posted several links on the page titled LINKS for anyone wanting more information on going the thermography route in NJ. The other thing that came up is that I heard about a book on breast cancer I wanted to check out. If it turns out to be enlightening, I will blog about that next time.
If anyone is using thermography in place of mammograms or in conjunction with them, I’d love to hear what you think about breast cancer screenings!
I just heard the breast cancer story related to the risk that certain women face. Perhaps the majority of women are not affected by this news story, but it should cause us to take notice. Are our annual mammograms really necessary?
That mammograms can be dangerous is something that many professionals have overlooked. This blog is above all about caution and making decisions based on the evidence and not fear. Mammograms do come with risks so when you embrace the mammo as something you ought to do to be labeled a good girl, realize that mammograms are not as safe as doctors claim. We remember DES. Trusting everything the medical community says without research and inquiry is not prudent. You have seen on this blog links to information from many doctors that do not support the mainstream. For example, some doctors recommend thermography instead, and I blogged about that before here.
In my last post, I reported that my next mammo would be in September, which is now, but I found out I am not really “due” until November as I did have one right before my surgery. For someone who has no additional risk of breast cancer, I have had a great deal of mammograms and a breast surgery during the past year, just to be sure. Again, I will accept the radiation in November as I chose to go the conventional route for reasons I explain in this post, but after the follow up visit with the breast surgeon, I will rethink the annual mammogram again. I had a reprieve from decision-making this past year because I had a normal biopsy, but now the routine process begins again.
The new research that questions the safety of the mammogram is alarming. It means that perhaps the radiation has done more harm than good for a select group of women. We really need to be more careful with this type of routine screening. So, are mammograms safe? No, they aren’t. Of course, once again, ignoring the issue is not safe either. Mammograms have saved lives. We need to make decisions individually based on the best information out there. While we should never listen to the conventional advice blindly, that does not mean we should stick our heads in the sand.
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.
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.
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.