|
Katie E. Boyle, MPH
Almost two weeks ago, I watched the ceiling of the hospital change as nurses wheeled me into the operating room for a hysterectomy and bilateral oophorectomy (removal of uterus, fallopian tubes and ovaries). As I described in my last post, I am a carrier of the BRCA 2 gene mutation and doctors recommend several prophylactic, risk-reducing surgeries. The first one, thankfully, is in the books and went very well. After posting my story about being BRCA 2 positive and before my abdominal surgery, a neighbor-friend of mine reached out to tell me she is BRCA 1 positive. In fact, she had had the exact same surgery one week prior! I called her and she was helpful with every question imaginable... She said recovery is totally manageable, and all will be well. She was right. Having healed from two cesarean sections, I was confident in my ability to handle abdominal surgery. Recovery from the c-sections was harder and more painful for me, it turns out. And, unsurprisingly, the presence of a tiny human each time increased the degree of difficulty of recovery....juuuuust a little. I mean....a girl can do anything after handling the newborn stage, right!? In the time leading up to this surgery, my mind zeroed in on very different thoughts and fears. In the days before, my prevailing emotion was fear of not waking up from anesthesia, which was unfounded, according to everyone, clinical or non-clinical, in my life. On the morning of surgery, my mind was occupied by meeting so many providers and answering all their questions. And in the minutes before, gratitude for science and medical advancement triumphed. Because of what we know about the human genome, I am able to have these organs removed that could develop cancerous tumors before they pose a risk to me! As I saw we were entering the pristine operating room...robotic arms hanging down...TV screens with color bars awaiting real-time images of my insides... I felt gratitude. I closed my eyes. And just like that, it was over. I have heard that gratitude is a good concept to cultivate as research supports its association with happiness. So I welcome any naturally occuring gratitude and spread that goodness around to anyone and everyone who deserves to hear they are appreciated. Ok, next up: My Reproductive Organs are Out. Now What? Next at bat? A radical, bilateral mastectomy and reconstruction. I have chosen to get reconstruction, but not everyone does. Here are a few great resources to review the current options available: Johns Hopkins, Susan G. Komen and US FDA (FDA link is more technical and from a medical-devices approval standpoint). My first wave of emotion regarding breast surgery was a sense of loss and regret for not appreciating my breasts, my entire body really, all this time. I haven't appreciated them, or had much confidence attached to them. But once I was told they had to go, surgically, I have realized they are really, really beautiful. My upcoming mastectomy and breast reconstruction has me holding grief in one hand and gratitude in the other. (My favorite spin instructor, Robin Arzon, said something like this during a class a long time ago, and mid-catching-my-breath, I cried on the bike. It's so true and so relevant.) But being in this imbalanced state has me feeling like a wave-beaten ship repeatedly trying to right itself. Men and women dealing with the prospect of a mastectomy have so many options available to them, should they choose reconstruction. For those who aren't sure, there is a book recommended by a coworker-friend of mine (which I have not read) called Flat and Happy. Here are a few things I've learned from my visits and conversations with six different breast and reconstructive surgeons in Connecticut. This account is from my perspective and includes my feelings. Remember to always discuss decisions about your health and treatment with your doctor. Reconstruction Options and Timeline Breast reconstruction can begin the same time as the mastectomy surgery, meaning in the same surgery, or in a separate one. After the removal of the breast tissue (mastectomy), reconstructing the breast can be done with saline or silicone implants or tissue transfers (also called "flaps") from another part of the body. Some women are eligible for "direct to implant" surgery, meaning implants are placed in immediately after the mastectomy. But use of temporary tissue expanders is also common. Expanders are basically placeholders for the future implant or tissue flap that stay in temporarily (up to a year or longer). The use of tissue expanders gives the surgeon time to ask detailed questions of the patient about what they want to implants to look like in the end. Tissue flaps can be sourced from many places, including the abdomen, thighs, back or upper butt (that's the scientific term). I'm interested in this latter option and I'm fairly sure (100%) that I have enough tissue to donate from that location. The butt tissue transfer is called an SGAP. Difficulty of Surgery Risk-reducing mastectomies for a person with no cancer are easier for the surgeon than mastectomies done to remove a tumor. So if you are having surgery for tumor removal, please know there are more questions to ask your doctor to confirm all of the details in this post. Necessity of Future Surgeries Implants require additional surgeries every 10-15 years, which many women with no problems choose to forego making the timeframe for replacing the implants more like every 20-25 years. Tissue flap surgery does not require additional surgeries. With both methods, women may choose to do revisional surgeries to optimize the results. Breast Sensation Sensation in the breasts is lost with implants....saddening. Sensation with tissue flaps is typically also lost, but can return very slowly over time...also saddening. I had not even thought about my nipples or how my nipples would fare through all this when my very helpful surgeon-friend told me some women may be eligible to keep their original nipples and reattach them, called "nipple sparing" surgery. This was another sad surprise: My nipples are quite literally "on the table." Saving the nipples, however, presents a very small risk because tumors can technically grow there. Patients who do not want to save their nipples can opt for the surgeon to reconstruct the nipple with different tissue or get nipple tattoos. Nipple tattoos? Wow. I'm curious. Surgeon Specialties Tissue flap transfer requires vascular microsurgery. This leads to the next point... Cosmetic surgeons specialize in certain things, so a surgeon that does implants may not do tissue transfers and vice versa. Furthermore, a surgeon who does tissue transfers may do mainly/only abdominal tissue transfers, and not butt/SGAP transfers. It seems to me so far that surgeons who do the butt/SGAP are rare, at least in Connecticut, and therefore I will likely have to travel if I want to go that route. The take away here is to ask exactly which surgeries the surgeon does when making the appointment. This point may seem obvious, but I found out at my first cosmetic surgeon appointment that she was not the person to talk to about tissue transfers. That set me back a few weeks, which was disappointing. I had waited for that appointment and realized during it that I would need to research another doctor, make another appointment and wait for that appointment too. Everything was disappointing. Side Bar for Comic Relief Also disappointing was this surgeon's choice of words when describing how the implant operation goes. She said "cadaver tissue" would be used to secure the implant in place. [PAUSE] I wanted to nastily scream, "What the F--K!?" to her to convey my disbelief. With a horrified look and tears welling up in my eyes, I looked over at Brian. And here is how the conversation went from there: I turned my gaze back to the surgeon. Holding back my disgust while simultaneously realizing the number of years I have on her, probably at least 10, instead of screaming I said, "What?! Every person who gets breast implants has signed off on walking around with someone else's skin on their body?!" She replied (I'm paraphrasing), "No. When breast implants are put in for cosmetic surgery without a mastectomy first, they are typically placed under the muscle and do not require the added skin. After a mastectomy, the implants are placed on top of the muscle, requiring cadaver skin to attach to." (Please as always ask your cosmetic surgeon for exact information on this!). So this is yet another example of being taken (ripped?) off guard. I pictured the hairy arm skin of someone's late Uncle Sal being used to build my new Franken-boobs. I said, "Well walking around with the skin of a dead person on me for the rest of my life is, unsurprisingly, triggering. Also, a total deal breaker." No implants for me!? Side Bar to the Side Bar for More Comic Relief I normally hold very high respect for a doctor, knowing the years and years of study and dedication required to become not only a doctor, but a surgeon! But seriously, doc? "Cadaver skin"? Even my lowly, non-clinical and definitely non-surgically trained self know that calling it "donor skin" or "donor tissue" maaaaay rest a little easier on a patient's ears, huuuh? How about we say "donor tissue" from now on and present this concept something like this: "Amazing medical advancements have allowed us this gift of valuable tissue from donors making these surgeries possible!" I found out later from my surgeon-friend that the "cadaver skin" she referred to is a collaged mesh fabric that, yes, is donated from an organ donor. Knowing that fact: How about we say, "collagen mesh material" instead of "cadaver skin" for crying out loud!? If collagen mesh is a truthful depiction of this tool used by doctors during surgery, why not say THAT and NOT creep-out the patients? Ugh. Surgery Length I've learned from my surgeon-friend that doing the double mastectomy, harvesting tissue from somewhere on my body and then shaping/placing it to reconstruct two breasts may not even be possible in one day and, if so - much like this sentence - would be a very, very long endeavor. Like 12-16 hours long. That feels risky, so I think I may need to break it up into two different surgeries. The Bottom Line At this point in time, I think I want to do the mastectomy followed by the tissue expander (temporary placeholders) option while I find out where I can do the SGAP tissue transfer surgery. Since finding surgeons for this first step will be easy, I hope to do the surgery in early summer this year, but nothing is scheduled yet. I just don't know if I can handle more weeks of recovery barely doing anything. I have a great mastectomy surgeon, but I'm still looking for a great, highly-recommended surgeon whose specialties include SGAP in CT, MA or NY. The bottom line is: There've been many sad surprises and realizations along this learning curve, but the positives are many. I'm healthy. I have access to quality health care and incredibly talented surgeons. I have a very supportive family and community around me. One surgery down, two more to go.
0 Comments
by Katie E. Boyle, MPH I don’t know if it is common knowledge that with a family history of cancer, there are specific questions we all should be asking - of our families and doctors - to determine eligibility to access a free genetic test that reveals lifetime risk for breast, ovarian, pancreatic and other cancers.  Did you know that having a cancer diagnosis in your family could indicate an inheritable genetic mutation in your family’s DNA that predisposed your family member(s) to that cancer? Did you know that if that family member has the mutation, it’s possible you have it too and your lifetime risk for those cancers are higher than the average person? I am a fairly educated person on the topic of health and didn’t put two and two together until something very rare occurred in my family. For background, I have three family members on my mother’s side with cancer diagnoses and two on my father’s. Until this strange thing occurred, I was unknowingly living with a condition that raises my risk significantly for cancer. (When I say “significantly” I mean enough for doctors to recommend to me, a healthy person with no cancer, to remove my ovaries, fallopian tubes, uterus AND have a bilateral, radical mastectomy. Those are two “major” surgeries requiring full sedation. That’s significant.) And yet I hadn’t known to ask the right questions of my doctor! After my and my family’s experience, I want to tell my story to ensure everyone begins asking the right questions. Strange Thing: My Uncle’s Breast Cancer Diagnosis In September 2022, at age 66, my uncle on my mother’s side was diagnosed with breast cancer. Earlier that summer, he had found a lump near one of his nipples. He monitored it, later saw his doctor and had a biopsy. It came back positive for breast cancer. Being a man with breast cancer triggered red flags and his doctor sent him to have the genetic testing for variants in the BRCA1 and BRCA2 genes. My uncle planned his mastectomy and coordinated the genetic test. The test came back positive; he was in fact a carrier of the genetic abnormality in the BRCA2 gene. Thankfully, doctors were able to remove all of the cancer and no chemotherapy was necessary. He was back travelling internationally by November!  My Uncle Richard Melchionno in Funchal, Portugal, November 2022 What are the BRCA1 and BRCA2 gene mutations? For the science about the BRCA (pronounced “brack-ah”) gene mutations, please visit one of these great resources. CDC NIH A mutation in either the BRCA1 or 2 genes in our DNA is the genetic condition called hereditary breast and ovarian cancer syndrome (HBOC). As a brief summary, the BRCA1 and 2 genes produce proteins that help the body fight off cancers, mainly breast and ovarian, but also many others. With a mutation, or defect, in either gene, the body doesn’t fight off cancer cells like it should, so a person’s risk for growth of certain cancers is elevated significantly. BRCA Testing and Who Should Get It BRCA testing is done as recommended by a doctor and coordinated through a genetic counselor. Knowing your status opens up opportunities such as more frequent screenings and “risk-reducing” medications and surgeries. If you only read up until right here, the main point I want to relay to all women, and men, age 18 or older is this: If there is a breast, ovarian or pancreatic cancer diagnosis(es) in your family history (ask your family members if you’re not sure) you should ask your primary care doctor or gynecologist whether the BRCA genetic testing is right for you. Your doctor will then ask you the important questions from there to determine your eligibility. These questions will include describing aspects of your family members and their diagnosis(es): their age at diagnosis, their gender and how many in your family have had the diagnosis. It may turn out that your parent will require testing before you become eligible, as in my case. Zeroing in on My Test My mother had a 50% chance of having the same result as my uncle, her brother. His positive result made her eligible for the free test and sadly, hers also came back positive. This made my brother and me eligible to find out. Thankfully, my mom had a breast MRI and at age 72, and no cancer was found! She is now on her journey to decide what to do. At this point, I still had hope in my chances of being negative! Learning My Results, December 2022 The day I got my positive results, I was getting into my car after a particularly bad job interview. As I buckled my seatbelt, the phone rang. My genetic counselor had the results. I knew it was a bad time, but who wouldn’t answer the phone knowing such heavy results had come back? I learned I was positive. Crying my eyes out, I hung up with her so I could call my husband. I revealed the results of the test (and unleashed about the job interview too). I needed to HATE something/someone. I ranted and raved about the company I interviewed with, and he listened. We saved the “big stuff” for later that night at home. Despite the lineage of positive tests, I was floored to find out that I had in fact inherited the BRCA2 gene mutation from my mother. Why was I floored? Two reasons: Back in 2007-2009, I had learned while in UConn’s master of public health (MPH) program that this mutation is more commonly found in women in the Ashkenazi Jewish population. I had erroneously checked that particular risk into a box other than my own. Actually, I think I checked that particular risk off the list. The second reason I was floored: back in 2015, I had taken one of those direct-to-consumer “genetic health” saliva tests from a popular company to look for any genetic abnormalities. No abnormalities were found in the breast cancer genes they tested. I was pissed that I had the wrong information for all that time! How that could happen is something I will explore in another post. Stay tuned. The Repercussions of the Results I made an appointment with my gynecologist, who I love. I learned with my husband by my side that since I am past my childbearing years, my ovaries and fallopian tubes should be removed. And, since I have had abnormal pap smears in the past (even though secondary testing never found any cancer) a hysterectomy would be prudent too. This would mean immediate menopause. While jarring, I was prepared for this information. What I wasn’t prepared for was the fact that a radical, bilateral mastectomy is indicated too as the most complete risk-reducing measure. I had not realized that science sees this radical surgery – on a healthy person with no cancer – as the best measure to reduce a BRCA2 positive woman’s risk of breast cancer. That fact stuns me to this day. Surgery, which is usually avoided at all costs, on a healthy person? That means the risks are real, definite, and that’s terrifying. I buried my face in my husband’s shoulder in the hallway and bawled. Deciding What to Do Of course, for any surgery, it’s my choice. For my ovaries and tubes, removal makes sense because, at age 43, I’m done with childbearing. The surgery and recovery is also relatively easy. There is also no good way to screen the ovaries; there is no ovary analog for mammograms. This results in ovarian cancer being found at very advanced stages, making it much more deadly. For my breasts, I could opt to have more frequent and more in-depth screenings – MRIs – for the rest of my life, covered by insurance. If you know the way I operate, I have always had the idea of preventing disease and injury at front of mind since losing my father to a workplace fall. Where a negative outcome is preventable, I will do anything necessary to keep it from happening. I can’t bear the thought of finding a tumor in ten to fifteen years, and requiring surgery and possibly chemo then too. I wanted to deal with this – and mourn this – once, and that has to be now. After the appointment with my gynecologist, the next appointment I made was with a gynecologic oncologist. I learned the abdominal and breast surgeries should not be done together in one day. I learned about logistics of the surgery, scars, treatments for menopause, considerations for other risks down the line, along with all the details necessary to move forward. My plan is to do the full hysterectomy with bilateral Salpingo oophorectomy (ovaries and tubes) at the end of April. Next at bat were surgeons for the mastectomy and the reconstruction, two separate entities that are performed on the same day one after another. I have not yet found this team of Superhumans who will work together in one surgery to remove all the breast tissue and reconstruct new breasts. For me, deciding to have the surgeries was actually very easy. It was a yes from the moment I learned it would prevent me and my family from dealing with cancer. What You Can Do If anyone reading this has a breast, ovarian or pancreatic cancer diagnosis or has a family history, they should be asking their doctor whether the BRCA genetic testing is right for them. It matters for your and your family’s health, now and for generations to come. It’s important to note that direct-to-consumer genetic tests for which you pay online and send in saliva samples are NOT adequate to understand your risk. The full genetic test through a doctor and genetic counselor is the only way to find out if you have the BRCA1 or BRCA 2 gene mutation. At that point, you will be armed with information about your future health upon which you and your children can greatly benefit – and act. by Miles Martin
By now we are all aware of the huge environmental crisis presented by climate change. We hear about it on the news constantly, and we are reminded of it again every time we go to throw something away. We are regularly encouraged to take action to reduce our individual impact on the environment by “going green.” And while recycling, reducing food waste, and remembering to turn off the lights are all noble things to do, they do not have as big an impact as you might think in the grand scheme of things. To solve any problem, it’s critical to find the source. And climate change is no exception. Small individual actions do not make a huge impact in solving the climate crisis because they are not a major cause of the problem. The real root of the problem is big industries. How Industries are the Bigger Problem While it can seem like every small “not so green” action, like throwing away a plastic cup, must be destroying the planet bit by bit, don’t forget – that cup was there before you picked it up. It was put there by manufacturers, distributers, and retailers who have no idea who you are or why you wanted it. They produced the cup because they assumed (in this case correctly) that somebody would buy it. But you are not directly responsible for that cup, even if you use it and throw it away. When it comes to climate change, individuals are statistically blameless. A recent report from CDP (Carbon Data Project) revealed that just 100 companies are responsible for 71% of global greenhouse gas emissions since 1988. Twenty-five (25) corporations are responsible for just over half of emissions over the same time period. Here are some of the biggest offenders by industry: Energy Companies include: Saudi Aramco, Chevron, Gazprom, Exxon Mobile, National Iranian Oil Company Shell, BP This is by far the biggest contributor to climate change. In fact, if you go back far enough, many activities across industries that contribute to climate change can be traced back to burning fossil fuels. These companies extract sources of energy like oil and coal from the Earth and sell them to individuals or other industries that need them – which is unfortunately pretty much everybody. Agriculture Companies include: Fonterra, Daily Farmers of America, Cargill, Tyson Foods, JBS. Agriculture contributes about 10% of global emissions according to the EPA, and it does so in a few ways. First, large-scale agricultural systems in developed nations require a lot of fuel to transport supplies and equipment, as well as the food itself. Second, the agricultural process itself introduces its own greenhouse gases like methane from livestock and nitrous oxide from excess nitrogen in the soil. These are not the same gases as those released by burning fossil fuels, but they are still greenhouse gases that contribute to climate change. Manufacturing Companies include: Exxon Mobile, Chevron, Boeing, General Motors, Ford Manufacturing produces about 22% of emissions according to the EPA. A lot of the big-hitting manufacturing companies are the same as those for the energy industry, because many oil companies also produce plastic (like Exxon Mobile). Industrial emissions can classified into direct and indirect emissions. Direct emissions are from the direct burning of fuel, while indirect emissions are from using electricity generated at a power plant. Given that every factory in the modern world uses electricity in some capacity, these indirect emissions are a major factor in manufacturing emissions. Success Stories While there is still a ways to go, there has been some progress to date on making industries change. Here are a few success stories in larger climate change policy:
Why Industries Stay on Top Though industries can only produce these astronomical emissions while we continue to use and purchase their products, it’s difficult for consumers to make a huge impact because we need these products and alternatives are not always available. So consumers appear to have the power but are often trapped by large corporations. Plastics are a great example of this problem. Production of plastic is a massive contributor to climate change because plastic begins its life as fossil fuels, and end up in landfills or the ocean where they break down into toxic microplastics. Worse still, plastics are often incinerated, flooding the atmosphere with all the carbon used to make them. But as evil as plastic may seem, most regular people absolutely need it. It would be nearly impossible to go a whole day without using plastic. Components of your cell phone, computer, car, house, and almost everything else you use are all made of plastic. Plastic is also used for broader societal needs like medical supplies and equipment for law enforcement and first responders. So as much as industries would like us to think that solving climate change is all about individual choices, there is clearly a much larger issue here. And it is one that industries are avoiding. To date, no company has officially committed itself to reducing its own emissions and those of its products to align with science-based goals of limiting average global temperature rise to 1.5 °C (we are currently at over 1.0 °C). Industries are waiting for us to make the change. And while it’s difficult, there are some things that you can do, and it’s not all about recycling either. What you can do to help While it may seem like the industries contributing to climate change are all-powerful and there’s nothing an individual can do, this isn’t entirely true. Remember, these industries ultimately rely on consumers to purchase their products and services. No business can run without its customers – and that means you. Since an industry’s main goal is to make money – we as the consumers do hold some power. The reason large corporations are not operating more sustainably is because we have not produced enough demand for it. Producing this demand is easier said than done, since we often passively support big industries out of necessity. For example – Many products on our grocery store shelf are a result of unsustainable agriculture, and they are delivered from farms to warehouses to supermarkets by trucks, planes, or barges all fueled by big oil. While changing industry practices isn’t as easy as turning off a light switch, here are a few things you can do:
It would not be fair to say that individual efforts have absolutely no impact on climate change. However, the impact of individual choices is not about your specific “carbon footprint,” but rather about the pressure put onto larger businesses to make changes in response to consumer needs. So while you can forgive yourself for occasionally forgetting to recycle, leaving the lights on, or driving your car instead of taking the bus, we still have an important role to play in saving our planet – forcing those who can save the planet to actually do so. Add your comments or questions below. 5/1/2020 Tools of Science by Christa Sadler
Science is under attack these days. From average citizens to the media and our policy makers, we’ve come to a place in our culture where what “I believe” is just as important as what the “experts” tell me. Although skepticism about science is nothing new, the proliferation of misinformation on the Internet, and social and mass media has become downright dangerous for us and our planet. So it seems like a good time to remind ourselves exactly what “science” is, and what it can and cannot do. One of the most common questions scientists hear is: “Yes, but how do you know?” “How do you know that things looked a certain way millions of years ago?” “How do you know that this additive will be safe in food products? “How do you know this drug will help?” These are reasonable questions, especially when only the final results of a long scientific inquiry are presented—whether it’s in geology, botany, physics, or medicine. One thing that helps is to understand a little of how scientists come to their conclusions. It is particularly important to understand that science is not a body of knowledge. Instead, it is a process that allows for ideas to be modified as new information becomes available. The process is called the scientific method and it is an elegant tool to help us make sense of the world in which we live—past, present, and future. The scientific method consists of questions, observations, tests, hypotheses and changes to these hypotheses, discussions, models, and ongoing investigations. The method is rooted in observation of natural and physical phenomena and the development of hypotheses from those observations. A hypothesis doesn’t just come out of the blue; it is an educated guess based on the information at hand to explain an observation. Once it is developed, a hypothesis must be tested, whether in the laboratory, by searching for more information, by examining other similar phenomena, by running controlled tests, etc. These tests must be repeatable, so that others can try them as well, as a control. Here’s the really important thing about testing a hypothesis: these tests are attempting to disprove the hypothesis, not prove it. While this may seem like a fine point, holding a hypothesis up to the light of skepticism ensures that scientists can avoid using only the evidence that supports an idea and may therefore skew the results. If a hypothesis does not stand up to scrutiny, it will be modified and retested. If an idea cannot be disproven by rigorous testing over time, and if it can explain a large body of information, it becomes a scientific theory (such as the theories of plate tectonics or evolution). So a scientific theory is very different from how we use the word in everyday life, where we use it to mean more of a guess or a belief. A scientific theory has instead undergone sometimes decades of testing and examination and has not been able (yet!) to be disproven. This is really important for people, the media, and policy makers to understand. The elegance of the scientific method is that it allows for continual modification of ideas as new methods, technologies, or information become available. An example is butter and margarine. As the medical establishment began to understand the connection between fats and heart disease back in the 1970s, butter was seen as a culprit. Doctors, and then the food industry, began pushing margarine. It wasn’t until scientists started to understand the effects of hydrogenated oils on our physiology that they realized margarine is much worse for the human body than an appropriate amount of butter. Another example comes from today’s headlines. The original estimates of extremely high mortality from the Coronavirus have now been revised downwards, thankfully, because new information has come to light (including how well social distancing has worked) to help scientists revise their models. Currently, medical experts say that there is no evidence that housepets can transmit COVID-19 to people, but if that evidence does occur, that statement will be revised. The important thing to remember is that if ideas change in science, that’s not a failure and it doesn’t mean the “experts” aren’t, in fact, experts. It means the method is working, and that we are remaining nimble enough to keep up with changes in technology, experience, and evidence. One aspect of science that is not given enough airtime is the concept of evidence-based practice. In the simplest sense, being evidence-based means being supported by a large amount of empirical scientific research, and does not rely on anecdotal or the researcher’s professional experience. The Oregon Research Institute has a great description of what this means. This is absolutely critical when considering things like food additives, beauty products, or medicines. For example, there was a lot of hype around hydroxychloroquine as a cure for COVID-19, but most of that hype was based on anecdotal evidence (basically stories). To be considered scientifically valid (and to guarantee safety and efficacy as much as possible for things like medicines and additives), testing must be rigorous, objective, controlled, and use a large enough number of subjects to account for variabilty in the results. When political leaders and media disregard the scientific evidence and the advice of medical experts either because they don’t understand how science works or for some other reason, it becomes extremely dangerous. So how do we know what to believe in a world that contains an overabundance of information—some of it pretty bad? Start by doing your own research. Most products that are used by the public have available information that has been distilled from science-speak into normal-speak, so you don’t have to have a PhD to understand it. Don’t rely only on Wikipedia or WebMD or other popular sources. You can start there, but find other sources. And look closely at those sources. Where is your information coming from? Here are some things to look for:
Following these suggestions may not always provide the perfect answer, but it will help you more readily distinguish information that is more trustworthy from that which is backed by an agenda, bad science, or no science at all. And the more important the subject is (a medication, chemical, or a food additive, for instance), the more seriously you should take this process. It’s worth the effort for you, your family, and your planet! 1/5/2019 Men and their fragrances. by Katie E. Boyle, MPH What if I said that your son's use of colognes or body sprays could affect his sperm quality and fertility later in life? Based on research done in animals so far, Boyle's Naturals (BN) and many in the scientific community argue this theory is truth. As such, BN wants to increase consumer awareness about the facts and dangers of chemicals in these popular body sprays. Here, we provide evidence for the recommendation to steer clear of conventional fragrance brands and seek out natural alternatives. Humans are a species with regular environmental exposure to chemicals incompatible with healthy body function and fetal development. Here are some facts. Hormones control spermatogenesis (sperm production). Conventional fragrance products contain phthalates (thal-ates) also known as "hormone-disrupting" or "endocrine-disrupting" chemicals (EDCs). Research in male animals has shown a clear link between exposure to high doses of phthalates and decline in semen quality, count and motility. In developing male fetuses, the mother’s exposure was associated with abnormalities in fetal skeletal and reproductive systems.(1-5) While we humans never get the equivalent exposure administered to these animals, we do know that human exposure to phthalates is ubiquitous. And we do know that phthalates are around us in a long list of things we live with and use daily, such as personal care products, clothing, cosmetics, furniture, children’s toys, building materials, medical devices, food packaging, supplements, cleaning products, pesticides and more.(6) And we do know is that three million metric tonnes of phthalates are produced annually (Bizzari, S., et al. 2000 as reported in 6). The precautionary principle in public health states that the absence of definitive data linking a suspected risk to a particular outcome should never delay taking action to mitigate the risk. This necessary action can be legislative, community-wide or in our own homes. Using the precautionary principal wouldn’t it make sense to stop using these products? And use no or natural fragrances instead? We are lacking in definitive proof because we haven’t and can’t directly expose humans to chemicals and tally up our daily exposures. Our levels of exposure to damaging phthalates are greater than we think, and increasing rates of infertility are very likely the result. Our levels of exposure to damaging phthalates are greater than we think, and increasing rates of infertility are very likely the result. So, staying on the males, human males exposed during all his life stages - the developing fetus, infancy, childhood, adolescence and adulthood - may be seeing varying types and degrees of reproductive effects, all of which directly negatively affect his fertility. BN's recommendation is to cease buying non-natural fragrance products, body sprays and perfumes. Doing that will reduce your exposures to phthalates, and take your name off the list of reasons why companies produce three million metric tonnes of phthalates annually. If the list of things containing phthalates seems overwhelming (it is), don’t fret. We have nothing to lose by taking stock of the products we use in our home, starting with one product. Do some research and switch it out for a more natural version. Search “natural organic perfume” and you'll find a lot of options out there. Or email BN for a suggestion. Remove one toxic product at a time from your home and you’ll be reducing your family’s exposures to harmful chemicals over time. And that's a definitive fact. If you are concerned about the info here, search “endocrine disruptors' effect on male reproductive system,” to read about it more and/or discuss with your doctor. You may also request a full, customized report on the status of the research done to date by emailing [email protected]. Disclaimer: Boyle's Naturals' educational content is not a substitute for professional medical advice, diagnosis, or treatment. Seek advice of a qualified health provider with any questions you have about a medical condition. This article presents BN staff's educated opinion based on published research we have reviewed. This is not a full literature review of absolutely everything published on this topic. Development of this content is funded by sales of Boyle’s Naturals’ products. So when you make a purchase, you are helping to bring educational posts like these into existence. Support our work at BoylesNaturals.com/shop. Research cited and more information:
1. CDC Factsheet on phthalates: https://www.cdc.gov/biomonitoring/Phthalates_FactSheet.html 2. Agency for Toxic Substances and Disease Registry factsheet on Di-n-butyl Phthalate: https://www.atsdr.cdc.gov/phs/phs.asp?id=857&tid=167 3. Rehman S., et al. (2018). Endocrine disrupting chemicals and impact on male reproductive health. Transl Androl Urol. 7(3), pp.490–503, doi:# 10.21037/tau.2018.05.17. 4. Rahman E., et al. (2015). A review on endocrine disruptors and their possible impacts on human health. Environmental Toxicology and Pharmacology. 40(1), pp.241-258. doi:# 10.1016/j.etap.2015.06.009 5. Slama R., et al. (2017). Characterizing the effect of endocrine disruptors on human health: The role of epidemiological cohorts. C. R. Biologies. 340, pp. 421–431. doi:#10.1016/j.crvi.2017.07.008. 6. Schettler T. (2005) Human exposure to phthalates via consumer products. International journal of andrology ISSN 0105-6263. doi:10.1111/j.1365-2605.2005.00567.x and Bizzari, S., Oppenberg, B. & Iskikawa, Y. (2000) Plasticizers. Chemical Economics Handbook. SRI International, Palo Alto, CA, USA.
And that's a good thing. The anti-perspirants we mention, and all others, have ingredients that intentionally and artificially clog our underarm pores to stop us from sweating. No sweat = less bacteria = less or no odor. That's how they work. On top of that, they contain synthetic fragrances to cover up any remaining stink our bodies may produce. It’s a brilliant mechanism and very lucrative industry. Deodorant/anti-perspirant is now a must-have staple item for everyone past puberty, which makes sense given that stinking to high Heaven is really not socially acceptable anywhere: at work, at the gym, on the train, wherever. But for those of us who’ve heard about the potential links between use of anti-perspirants and breast cancer, who don’t want to put synthetic chemicals on our bodies and/or feel that the body should be allowed to sweat and eliminate its toxins, we try nat-deo. Our journey through the "Nat-deo Elimination Rounds" goes like this: we forge ahead through the deodorant aisle and, one-by-one, buy each.and.every.single.damn.brand of nat-deo that exists. We start with Tom’s purchased at the pharmacy. Ok. Then we order from Amazon. We scour for the best deal. Then we shop at Whole Foods. We may have some success but alas, $12.00 for two weeks-worth of deodorant isn’t sustainable. “Dangit! Why is toxin-free living more expensive?” we say. And we suffer consequences of using nat-deo: By 10am, we stink. With no hard feelings toward nat-deo - in fact just the opposite - with appreciation for the companies who recognize that consumers need body odor protection without the toxins), Boyle’s Naturals created a solution. Gently scrubbing with PIT GRIT® Underarm Scrub in the shower or on-the-go before using your nat-deo makes it work better. Using only natural ingredients, PIT GRIT® fully cleanses the underarm and lets your nat-deo be its best self! We now have the freedom to choose any nat-deo brand we want, you say? The cheapest? The nicest smelling? Yes, yes yes! And we can use that nat-deo with more confidence! Combined with the fact that Boyle’s Naturals is a small, woman-owned manufacturer, we think you should try PIT GRIT® and see why people are calling it a “life-saver” and a “game-changer.” Order PIT GRIT® with free shipping by clicking below or here. PIT GRIT(R) Underarm Scrub
$12.99
Do you have stinky underarms and body odor, but can’t find a natural or organic deodorant that works well enough? Don’t sweat it – PIT GRIT, our all-natural odor fighting body scrub boosts natural deodorants’ ability to ward off stinky pits and offensive body odor. PIT GRIT can be used in the shower after a long hard day, or on-the-go in with natural and organic deodorant to better cleanse, remove build-up from the underarm and inhibit body odor-causing bacteria with just a dime-sized dab. In addition to fighting natural body odor, PIT GRIT is also a great solution for people suffering from excessive body-odor. Use it before applying your favorite brand of organic or natural deodorant, or use without deodorant. Try using it before working out and be amazed at how much less "smelly" those armpits can be! Instructions: Dispense a dime-sized amount onto wet hand, rub for 5-10 seconds in each underarm and then rinse or wipe away. Apply deodorant (or not) as normal. PIT GRIT UPC 865738000452 by Katie E. Boyle, MPH If your tween and adolescent kids wear perfumes or body sprays, they will not want you to read this post. I’ll start out by saying that I don't wear store-bought perfume. I want to; I am tempted by the appeal of the advertisements, the fame of the celebrities who back them and the fragrances themselves. Many of them smell so delicious as they float upwards from the page of the magazine. But I just can’t do it. Here’s why:
Unless noted otherwise, conventional perfumes contain synthetic chemicals under the name "fragrance" or "parfum.” That one word which may or may not be listed on the label actually represents a combination of a chemicals plus other things not listed, like stabilizers, mixing agents, dispersants and preservatives, all bundled into one ingredient: fragrance.(EWG) And we intentionally breathe this in and put this on our skin? Components of this mystery cocktail of chemicals act as hormones in our bodies, so we call them “endocrine disrupting" chemicals. What are endocrine disruptors (EDCs)? EDCs are chemicals that imitate natural hormones in the body; meaning the body treats them like hormones already in our endocrine system, allowing them to alter and damage cells. They can be present in the six-dollar or ninety-six-dollar bottles of perfume and are also in plastics, cosmetics, pharmaceuticals, baby care products, building materials, cleaning materials, air fresheners and insecticides. More details on EDCs and how they act in the body (e.g. the REAL sciency stuff) can be found at the National Science Foundation's page here. Why should this matter to you? EDCs are associated with increased breast cancer rates, abnormalities in reproductive function and anatomy (reduced sperm count, quality and motility) and neurodevelopmental delays in children (WHO). In a laboratory study, EDCs also assisted in the proliferation of breast cancer cells and inhibited the tumor-killing action of Tamoxifen used in treating the tumor (Kim, 2004). So not only did the EDCs help the cancer cells grow, they blocked the beneficial effect of the treatment used to combat the cancer = so f-ing scary! Humans - babies, children, adolescents to adults - are exposed to EDCs via ingestion, inhalation of gases and particles in the air and absorption through the skin. The developing fetus is exposed via transfer through the placenta. Chemicals in perfume are (obviously) inhaled and absorbed through the skin, or go from mother to baby in placenta or breast milk. A woman’s exposure during pregnancy is the most concerning, as hormones play a central role in the development of the fetus and negative health effects may not appear until much later in life. Young girls are getting their periods earlier, and exposure to these chemicals is a likely cause. Read more about the benefits a group of teens in a study at UC Berkeley experienced when they switched from conventional to natural cosmetics. The Solution – Google It Unfortunately, we are accustomed to smelling synthetic fragrances in everything from cleaning products to candles to cosmetics, but the chemicals in these products can and do hurt us! In reality, the only “safe” type of fragrance to use on our skin is the oil derived from fruits, plants and trees, such as lavender, cedarwood, ylang ylang, lemon, clove, geranium, vanilla and so many more. (But beware that any dermatologist will tell you about the risk for contact dermatitis or other skin reactions when using essential oils!) After reading this, go ahead and Google “natural perfumes” and you’ll find a bunch of “Top 10” and “Best of” lists to comb through. Some of the natural brands out there have the same sexiness, allure and price tag of the celebrity-backed perfumes, but by supporting them, you’re making a statement that you support the use of natural, healthy, sustainable ingredients, and moreover, you back the companies who have those values built in. If purchases of conventional perfumes go down, those manufacturers (and celebrities) will hopefully take heed and nix the toxins in their formulas! I say, if the alternatives I have to choose from come straight from the Earth with names like clove, grapefruit, lavender, lemon, vanilla, ylang ylang, geranium, rose, vetiver, wild orange.... why would I ever consider buying conventional perfume!? Natural fragrances are a million times better and can in some cases can have therapeutic benefits, like inducing relaxation, soothing tired muscles, boosting immunity, assisting with focus, reducing inflammation or stimulating the senses. Given the great benefits of going natural, I am a voice asking you and all consumers to stop buying conventional fragrances for yourselves and your daughters/sons. Natural fragrances are no more expensive than perfume, and with the added therapeutic benefits and comparable investment in sleek and sexy packaging like the others, they are a cool gift to receive and a total WIN-WIN! References: EWG: https://www.ewg.org/skindeep/ingredient/702512/FRAGRANCE/ WHO: http://www.who.int/ceh/risks/cehemerging2/en/ Kim, 2004: Kim IY, Han SY, Moon A (2004a). Phthalates inhibit tamoxifen-induced apoptosis in MCF-7 human breast cancer cells. J Toxicol Environ Health, 67:2025-2035. More reading: http://www.breastcancerfund.org/clear-science/radiation-chemicals-and-breast-cancer/phthalates.html SixClasses: http://www.sixclasses.org/bisphenols-phthalates/ and http://www.sixclasses.org/wp-content/uploads/2014/07/EDC-webinar-slides.pdf  by Katie E. Boyle, MPH
My first career out of college in the early 2000’s was as an Environmental Scientist for an environmental consulting and engineering firm, GeoInsight, Inc., in Connecticut. There, I learned from the best* about how water is sourced, treated and delivered to our homes, along with the state and federal water quality standards that public water is required to meet. I learned how to properly collect a water sample from the tap, submit it to a lab for testing to look for contaminants and interpret and report the results. I also learned that I can be in charge of my home’s water quality by learning more about the testing that’s regularly done on it, along with the filtration systems I can use to supplement the treatment the water has already received. The Environmental Working Group (EWG) has made being in charge of your home’s water quality much easier by publishing a national Tap Water Database and Water Filter Buying Guide. What does this tap water database do? It compiles results from drinking water testing done by our public water supply companies across the nation. And it answers these questions for us:
EWG also provides an in-depth guide to the water filtration options out there. It contains descriptions - in one easily-accessible place - of every type of water filtration system one can buy, from the tiny ones inside a water bottle to the big expensive whole house filtration systems that are professionally installed. Based on the water quality results you find for your water system, you can choose a filter that's right for you. Each filter description is linked to options for purchasing: how handy! I was pleasantly surprised at the under-sink options available in the $100-$200 area, a price point I feel like my family can manage. To see whether your water supply company is in compliance, along with any contaminants found in your water in the last quarter, enter your zip code by clicking the link for EWG's Tap Water Database. Then click through to research water filters that make sense for your needs. 4/19/2017 3 Things I Learned Just by Showing Upby Katie E. Boyle, MPH On March 31st this year, the Coalition for a Safe and Healthy CT, an advocacy group that aims to protect our children from toxic chemicals, held a press event to voice concerns over the use of recycled tire rubber as a ground cover in playgrounds and urge passing of the bill to ban its use. I saw firsthand the world in which the Coalition works and learned a few things about the legislative process, the science, and the impact of simply showing up to relay my concern. Here are three things I realized:
1. Showing up is actually not that hard to do. Driving into the CT state capitol to the the Legislative Office Building is easy. And I managed to stand for a half hour with my two year old, and keep her occupied in front of the cameras, in order to express my support for this legislation. You can do it too; if you have interest in learning more and lending your support on these issues, follow the Coalition on Facebook, and you'll see all their calls for action. 2. Standing up for what you believe in is worth a little inconvenience. When the Coalition asked me to come with my kids to the press event on March 31st to show how much we care, I wasn't sure I could do it. My oldest daughter had a fever, had to stay home from school, and we had no child care plan other than me! My husband stepped in, knowing how important this issue is to the health of our children, and stayed home from work for the morning so I could attend. 3. My presence was impactful. Adding to the voice of the Coalition to support the passing of a piece of legislation is humbling and empowering. Representatives and the Coalition work SO hard to bring awareness, digest the science for the general public, relay our concerns and rally the masses, but the impact of a mom holding her child and talking about her concerns can be massive. The legislators listen. The reason we care so much is because tire rubber is not a natural material, being made of toxic chemicals such as benzene, mercury, polycyclic aromatic hydrocarbons, styrene-butadiene, arsenic, heavy metals and other carcinogens. Children young and old playing at the playground on this surface are exposed via ALL routes of exposure: inhalation, absorption and ingestion. And when the material gets hot, the chemicals "off-gas," into the air. While the use of old tires as ground cover on our playgrounds seems like a solution for what to do with all our discarded tires, it's absolutely NOT. Weighing the risks, it is not an acceptable solution. We absolutely need to do better for the health of our kids. A HUGE thank you to the Coalition for protecting our children from toxic chemical exposures. I am proud to be a part of your mission.   A word of advice: if you have the choice to buy your little girl a "spa set" like this or a bat and ball, get her the bat and ball. Why? Come on; a million reasons. A bat and ball gets her outside. It gets her moving and playing with her siblings and peers.
And it doesn't come with an increased risk for early puberty or cancer. Spinning this gift set around to read the back label, there is a clear, large warning that reads: "This product contains a chemical known to the State of California to cause cancer." Did that make you pause? This warning is now required due to the progressive legislation in the State of California aimed to protect human health. (Track the legislation efforts and progress in your state at the Safer States website here.) Let's look a little deeper into two of the ingredients in these adorable little pink tubes and bottles. Fragrance All the items in this set have fragrance on their list of ingredients. As I have reported before, fragrance is one word to describe a mix of synthetic chemicals and odor masking agents. In the name of not disclosing "proprietary" blends of ingredients, companies generally do not report the chemicals used in their fragrances. So, let's take diethyl phthalate, a common chemical included in fragrance formulations. We know that diethyl phthalate interferes with thyroid hormone regulation (animal studies) and is an immune system toxicant and allergen (human studies)...not to mention its toxicity to wildlife and the environment (1). Click here for more information on Fragrance. Butylated Hydroxytoluene (BHT) in the lip gloss BHT is a toluene-based ingredient used as an antioxidant (preservative) and scent masking agent in products. Toluene is a highly volatile petrochemical solvent and paint thinner (2). Very high levels of exposure (much higher than in the use of these products) can damage the nervous system, skin, eyes, respiratory system and kidneys. A woman's exposure during pregnancy can result in birth defects and abnormalities in child's development and growth…[in addition to] spontaneous abortion (3). And toluene has been linked to malignant lymphoma (2). BHT, which comes from toluene, is in the lip gloss your daughter is putting on her lips. So why do we give our kids these products?! Our little girls' bodies, at every stage until adulthood, are still growing and developing, so why in the Lord's name do we buy these products and give them to our children...to apply to their lips and skin? Science is documenting that environmental factors play a role in early puberty and hormone-related cancers. Let's just quit spending our hard earned money on products like these. And if you're not sure the origin of a product, such as the adorbs little blue lip gloss given out at the fast food place, just toss it in the trash. 'Cause we both know our preschoolers are not only going to apply the lip gloss but ingest it too. The Bottom Line The minute we refrain from buying toxic personal care products and instead go for brands with fewer chemicals (...or decide NOT to buy body wash for an 8 year old at all), companies will take notice. Large corporations like Walmart and Target are already making huge changes to the chemicals policies on a voluntary basis. Even though it's baby steps, I applaud this wholeheartedly! These are promising steps toward offering safer products, but they need to see an unwavering shift in demand from consumers. So save the money on toxic personal care items for your little girl, and instead promote her physical fitness, confidence and team-player attitude with a good old fashioned sports gear! The bottom line is: if we stop buying it, stores will stop selling it and instead focus those dollars on something else (perhaps signing up for the Chemical Footprint Project or taking steps to contract with product suppliers who have responsible chemicals policies). And we get to see our kids grow up living the healthiest life they can! References: 1.https://www.ewg.org/skindeep/ingredient/702512/FRAGRANCE/ 2.https://www.ewg.org/skindeep/ingredient/706577/TOLUENE/# 3. OSHA: https://www.osha.gov/SLTC/toluene/health_hazards.html 4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065309/ |
RSS Feed
