There are lots of resoruces about smoking cessation that can be helpful. The challenlge today is to stop smoking and prevent nicotine addiction as early as possible, among teens and young adults. I've come across a new resource available online through a private faith-based university, Maryville University, which is offered as part of their health professions curriculum. The pamphlet focuses on smoking among college students. Posting the document here does not in any way represent an endorsement of their educational offerings, but it represents a sharing of a useful document that they have produced.
Recently research (summarized in the New England Journal of Medicine) has revealed that less invasive cervical cancer surgery is not a good idea. Rates of recurrence are significantly higher than those for the total hysterectomy surgery that has been the recommended approach for many years. In addition, survival rates are significantly lower. If you're dealing with even an early cervical cancer diagnosis, it's worth reading up on the options and their implications.
The Washington Post details the latest actions being planned at the FDA to take on vaping, which is a growing threat for young adults. It's also limiting where e-cigarettes may be sold. That's good news for all of us who are worried about addiction to nicotine products and their health implications.
Apparently Juul is getting concerned enough about pressure against its vaping products that it is offering to pay schools to blame the rise in vaping on teen peer pressure and not on addiction. The company is creating "educational" materials and offering them, together with financial compensation, to schools to include in their health curricula. This is shocking. Take a look at the article and see for yourself.
Cancer researchers have for a long time confronted a dilemma: each patient's personal medical data is private and confidential, owned by the patient but stored in his medical records. Yet progress in solving cancer's most complex puzzles, at the cell biology and genomics level, depends on researchers being able to use "big data" (huge computer processing capabilities) in sorting through large quantities of patient data. Now, using data that are separated from patient identifiers, a nonprofit exists that allows patients to opt in to share their data in the interests of medical discovery.
The Boston Globe (October 19, 2018) described the formation and early success of Count Me In, which was founded by a collaboration among Emerson Collective (a California-based social change organization) and three prestigious cancer research nonprofits (Broad Institute of MIT and Harvard, Biden Cancer Initiative, and Dana-Farber Cancer Institute). If you are or have been in treatment for cancer, you may want to check out this organization. It looks like a responsible and productive way to share your data in a confidential but potentially useful manner that may help resolve some of cancer's most intractable questions.
The blessing of cancer research is that new treatments are being discovered, but the curse is that they grow ever more costly. Statistics show that the financial impact of cancer treatments can be devastating for caregivers and their loved ones. This becomes even more critical in an environment where healthcare insurance coverage for pre-existing conditions and Medicare / Medicaid insurance are being threatened by an Administration that's lacking in the combination of compassion and common sense. For cancer patients and caregivers, it's important to ensure that you ask the right questions about the costs of treatments and ask cancer centers for suggestions of where to find funding support.
The New York Times explained the dymanics of cancer's financial toxicity in October 2018.
I'll be seeking more financial support resources to post on this website's Resources page.
E-cigarettes (vaping) have become a legitimate anti-cancer target. The chemicals in the vapor can be as addictive as those in cigarettes, and they can have a dangerous impact on our youth. Here's the latest, from the Washington Post.
A new approach to breast reconstruction after mastectomy is described in the New York Times and offers useful information for women who are about to undergo this surgical procedure. Unlike traditional techniques, which inserted the implant under pectoral muscles and engendered ongoing pain and discomfort, this approach is said to be significantly more patient-friendly. If you're considering the alternatives, this could be "must" reading.
More on e-cigarettes and vaping: "A study of saliva samples from a small group of electronic-cigarette users confirmed that vaping produces chemicals capable of damaging DNA and potentially increasing cancer risk." If you or a loved one is vaping, this is worth a read.
The Washington Post is reporting that use of E-cigarette products by kids has grown exponentially, and the FDA is taking action to enforce restrictions on their sale to minors, calling their use an "epidemic." The tobacco wars have been ongoing for years, but this marks an important milestone for the agency.
An article from the Washington Post helps explain not just the health consequences, but the financial consequences of surviving pediatric cancer. It certainly beats the alternative, but it's a big patient support issue that professional cancer caregivers and medical institutions have yet to address appropriately.
The FDA, in April, indicated that if kids' access to e-cigarettes isn't curtailed, they will further constrain adults' access to vaping. This article lays out the FDA message.
Several months ago, the American Cancer Society (ACS) issued a statement that vaping is acceptable as an aid to stop smoking, but that it is harmful in and of itself if continued and, worse, if used as an accessory to cigarette smoking. This article may prove useful if you're in a quandry about what to do. Yet other preliminary research information suggests that vaping is not an effective smoking cessation tool.
There's a lot of research underway to attack pancreatic cancer, one of the most difficult to treat. For those who are in treatment for "resectable" pancreatic cancer (that means operable), there is a new post-surgery treatment that appears to lengthen lifespan in a meaningful way. Hopefully this is only the beginning of a new wave of progress in treating this nasty form of cancer.
Cancer research is making great strides toward breakthroughs, but the costs can be alarming. The most current wordof miraculous progress comes through an early June Washington Post article. This article offers hope, although the costs are overwhelming. It's a sign of progress.
Even for those who have health insurance, financial issues associated with cancer treatment can be overwhelming. A very useful article ran on April 27, 2018 in the New York Times about the need for a patient's bill of rights. If you're entering into cancer treatment, you might want to read this article to get a feel for questions you should ask before committing to a course of action. You can't avoid all of the hazards, but it may help you to know your choices more clearly before the fact.
When cancer seems to run in the family, it's natural to worry about whether you're carrying a gene (BRCA 1 or 2) that increases the probability of your being diagnosed with breast cancer. Recently a consumer test has been approved by the Food and Drug Administration, but it's not all that you might hope for. There are over 1,000 genetic mutations that could lead to breast cancer, but the new test only identifies the presence of three of them. These are not the only BRCA-related mutations, and they only relate to a small proportion of breast cancer patients.
The moral is to be careful and know what you're buying if you decide to invest in such a test. Easy doesn't necessarily mean that it will give you a clear direction on your own probability of a breast cancer diagnosis.
Proton Beam therapy is the gold standard for particular kinds of cancers, especially for children (whose tissue growth could be damaged by excess radiation) and adults with cancers in spots (like head, neck, and left breast) where precision is required in radiation delivery to minimize damage to critical organs. It's a technology that allows the bulk of the delivered radiation to be deposited into the tumor itself, with far less damage to surrounding tissues than traditional radiation, which goes completely through the body and often damages tissues on the other side of the tumor. The equipment is enormous and is installed in a multi-story building, partly underground, which can feel intimidating. The Washington Post has a useful article explaing how it works and giving insights about why it's effective. If you're receiving or have been offered proton beam therapy, this article migiht prove enlightening.
Hospice care is available after you receive a medical diagnosis that a patient has less than six months to live. It represents a cessation of curative treatment and intensifying of palliative care to keep the patient comfortable during his or her final months, weeks, or days.
Hospice can be a Godsend to patients and their caregivers. It helps manage physical needs while preparing the family for imminent loss. The combination of physical and psychological support can prove invaluable if you know what questions to ask and what to expect. As in other stages of cancer care, expectations must be managed.
In-home hospice medical services are generally delivered by a team of nurses, interchanging roles from day to day. It’s important to have a case manager and to ensure that there is a seamless transition from one person to another in terms of hand-offs and continuity of care. The care team manages medications, pain and anxiety relief, bowel care, hydration, and general physical well-being for bed-bound patients.
Psychological services vary, depending on the family structure. At times social workers can help families to have difficult conversations about the dying process and help manage patient and family expectations. For many, such conversations are both memorable and soothing in the aftermath.
Let’s take them one at a time.
Regarding physical care, Deborah’s husband was unclear how hospice would work. He had cared for her during her nine-month rapid decline from inoperable lung cancer. (She had never smoked.) As he reflected on the experience six weeks after her death, he knew he was having different caregivers each day but afterward he realized he had assumed that the hospice team would coordinate among themselves in addressing whatever physical and medical issues needed attention.
After Deborah experienced predictable and preventable bed sores and bowel-care issues that weren’t handled until they became serious, he realized that no one had actually been in charge and that there had been little coordination among caregivers. Reality is that you have a choice of hospice providers, and asking how coordination is handled should be an important of your hospice decision.
Psychological support is a second important hospice component, especially when children are involved. For some, it’s about end-of-life conversations, and for others (like Artie’s grandchildren) it’s about knowing what to expect as your loved one is dying and creating memories and objects that will remind you and the children of their loved one.
Conversations are opportunities to learn and to share in ways that will pay back after the patient dies.
For example, for Doug’s mom, one of the most important conversations with her dying son was in response to her question, “How would you like to be remembered?” That conversation allowed them to create a family foundation in his memory, for adolescent cancer patients.
When John’s daughter asked him what he expected after he died, his response was memorable: “I’ll always be there, but you just won’t see me. When the sun is out, it will just be me breaking into your world.” She still says there are days when she feels his presence more than others, many years after he died.
Artie’s grandchildren still have a mobile that a social worker helped them make, so the sound would remind them of him every time a breeze jostles it. They also saved and still have his pillow case for when they want to comfort themselves recollecting his presence.
Sometimes the combination of physical and psychological services works better than others. For Deborah’s husband, hospice social workers and nurses didn’t manage his expectations or help him create the moment to say goodbye.
Early on in her illness, even though they knew her cancer was inoperable and likely terminal, they were devoted to praying and hoping for a miracle. Thinking back, he says that saying goodbye or leaving notes or recordings for the family might have felt like being unfaithful to their hopes and prayers. Then, when the transition came to hospice, she took a sudden turn for the worse and couldn’t communicate any longer.
“I know that my hardest days are when I trick myself into thinking that somewhere I will find a note from her. I have torn the house apart looking, and even though intellectually I know it is probably not to be found, emotionally I am destroyed by my desire to hear from her. . . . I tore the house apart looking. I found pages of notes written to God asking for healing and telling him she didn’t want to go, but I haven’t found anything written to me. Because she turned from well to debilitated so fast, she never did say goodbye.
"Patients need to be encouraged to say goodbye before they become too ill to do so, even if it turns out to be like the Rolling Stones Farewell Tour, which, I think, has been underway for over 20 years!”
Hospice can be a gift if you use it wisely, and hospice at home can relieve stress and residual PTSD for patient, family, and friends. When you move a loved one into hospice care, ask lots of questions, both about services that will be provided and how they'll be coordinated among care team members and about what to expect as your loved one’s health deteriorates.
A “meta-analysis” of 141 research studies to explore the impact of cigarette smoking on the risk of coronary disease was conducted in 21 countries between 1946 and 2015. The results were discussed in a medical newsletter on January 25. That analysis (a study of studies) revealed that after adjusting statistics for age and comparing those with facts about “never smokers,” smoking one cigarette daily increases the risks of heart disease and stroke by half the risk that would be incurred by smoking 20 cigarettes daily.
The conclusion drawn by public health experts who reviewed this analysis was that there is no safe level of smoking and that electronic nicotine-delivery devices, which are proven to maintain the urge to smoke and are often promoted as smoking reduction devices, do not contribute to lower coronary risks for their users.
In this age of "vaping" and electronic cigarettes, this is important guidance.
Science long ago discovered that tobacco products are addictive and cause a variety of cancers and other serious health problems like chronic bronchitis, emphysema, diabetes, and cardiovascular disease, many of which may prove fatal. Yet for decades the industry continued marketing to children and deceived adults about the harms of its deadly products, despite legal challenges endorsed by such public health groups as the American Cancer Society (ACS), American Heart Association, and the American Lung Association.
Beginning on November 24, 2017, major US tobacco companies were forced to begin publishing and broadcasting messages stating that they designed their products to be more addictive, even while knowing their health effects were deadly. Full-page newspaper ads will appear in papers in more than 50 major cities through April 2018. The television ads will run on major network or cable stations during primetime for 52 weeks. The court-ordered messages will also appear on websites, in cigarette package inserts, and wherever cigarettes are sold.
These statements are a result of a lawsuit filed by the Department of Justice in 1999 which led to a landmark judgment issued in August 2006. This judgment found the tobacco companies had violated civil racketeering laws and defrauded the American people by lying for decades about the health effects of smoking and their marketing to children. Years of subsequent appeals led to a final decision in November 2017, with a requirement for the corrective advertising.
Given all of the press and legal activity about the evils of smoking, it’s striking that many surveyed US adults and teens are still unaware that smoking’s harm derives from inhaling chemicals in cigarette smoke, rather than from additives. Three national surveys reported on December 7 in MedPage Today newsletter (https://www.medpagetoday.com/primarycare/smoking/61911) that between 43 and 72% of survey participants believe that the lethal chemicals in cigarette smoke come from additives introduced by manufacturers rather than from the cigarette burning; many also believe that cigarette filters capture the harmful chemicals. They don’t understand that the smoke from burning tobacco is inherently dangerous.
Clearly more public education is needed to overcome these misperceptions on the part of many remaining smokers, but facts are facts and science is real. Cigarettes kill, and finally the cigarette makers are having to come clean.
The 101 cancer caregivers whom I interviewed as a basis for writing Things I Wish I’d Known: Cancer Caregivers Speak Out shared four important learnings about their caregiving experiences, learnings that offer important support and guidance to help those who are just embarking on a caregiving journey. Those related to:
These four learnings are easy to remember if you think of the word “CHIN,” derived from the first letter of each key word. You know, “chin up” or “take it on the chin.”
Understanding each of these four learnings and developing tactics to address them can provide a foundation for effective caregiving and coping with the unexpected. This blogpost will address the first, Loss of Control, which colors the whole journey. Others will be addressed in subsequent posts.
Loss of Control
Nothing in life prepares you for the shock you receive when you or a loved one receives a cancer diagnosis.
The images caregivers share are usually violent and mind-numbing: the rug being pulled out from under your feet, a car crash, falling overboard from a ship and swimming as fast as you can, an earthquake, or getting on the wrong plane and landing in a foreign country where you don’t know the language, terrain, customs, or how things work.
Suddenly you’re no longer in control of your lives, let alone the outcome of the disease. You’re dependent on people you don’t yet know, processes you don’t yet understand, and your own coping behaviors, which probably have never been tested in such an extreme manner.
Everyone copes with the loss of control in different ways, usually out of fear of the unknown. One caregiver, the wife of a seriously ill cancer patient, went into therapy because her fear of being abandoned had led her to develop a crush on another man. Another, a corporate senior executive who had already lost two siblings to cancer and was helping his young wife fight breast cancer, nearly engaged in a bar fight before he pulled back from the brink.
Finding more constructive coping behaviors is the first step in restoring some control. That requires acknowledging the things that are beyond your control and defining those that you can control. Caregivers who handled the cancer experience most effectively were those who realized that even though they couldn’t control events, they could control how they reacted to events. That’s what happened when Carl’s wife challenged him, after he’d lost one leg to bone cancer, to continue swimming (his favorite pastime) with the full use of his remaining body parts. “Don’t waste time and energy on what you’ve lost,” she told him, “but focus on what you and we still have.”
For those who are used to living a fairly structured life, giving up control may make the adjustment to cancer caregiving especially unsettling. Yet by focusing on things they could control, the issues on which they could take action, they regained their equilibrium and felt more empowered.
The controllables included:
You can learn more about these lessons and the experiences of other caregivers in Things I Wish I’d Known: Cancer Caregivers Speak Out, available on Amazon or Barnes & Noble. Just click on the purchase link on this website.
Both men and women are subject to breast cancer, and October reminds us all that research is critical to ending the scourge of this disease, which is one of the most commonly diagnosed cancers. Much of the research underway today is focusing on understanding the process of metastasis, the process by which cancer spreads from its initial site to other parts of the body.
If you're reading this blog, you have an interest in learning more about cancer and about stopping it in its tracks. Funding research is a great way to help. As you consider what cancer research resources to fund, there are three that are important, two that are privately funded and one that comes from the Federal budget.
The first is the Inflammatory Breast Cancer Network, which was founded by an IBC survivor and crusader, Terry Arnold. Terry is based in Texas and collaborates closely with M.D. Anderson Cancer Center, which created the nation's first center of excellence focusing on IBC. The IBC Network 501(c)3 nonprofit is staffed comletely by volunteers and donates all donated funds to IBC research and maintains solid liaisons with the leading IBC researchers worldwide.
Most readers here haven't heard about inflammatory breast cancer, a type of breast cancer that doesn't show itself through the typical lump or through a mammogram. Rather, it emerges with terrifying speed and shows as a red and hot inflammation of the breast, with dimpling. It usually strikes young adult women, treatments are brutal, and the survival rate is grim. It represents only 2-4% of diagnosed breast cancers but over 10% of breast cancer deaths. My article on this topic appeared in Huffington Post in February.
The second wise target for cancer donations is the American Cancer Society, which is the largest nonprofit funder of cancer research and has among past grantees 47 individuals who went on to win Nobel Prizes for their work.
Many of them received their first research funding from the ACS. The Society is committed to doubling its funding of cancer research over the next five years. I've sat on a national research grant evaluation panel and am currently on one in New England. The proposals are breathtaking and inventive, and prospects for breakthroughs are good but depend on more funding to create sustainable work and bring it to the bedside.
Finally, the largest funder of all cancer research is the Federal Government, through the National Institutes of Health, National Cancer Institute, and Department of Defense. You can influence that funding by pressing your Congressional Representative and U.S. Senator to increase cancer research funding. The ACS Cancer Action Network (CAN) is asking for a $2 billion increase in annual funding this year. By supporting CAN, you can influence Congressional budget decisions.
Thank you in advance. Anything you can give or do for this cause will help save lives.
We all have a pre-existing condition. It stems from our being human. If you're reading this blog, you're probably either a cancer patient, a cancer survivor, or a friend or relative of someone who has experienced cancer or some other pre-existing condition like diabetes, heart disease, COPD, Crohn's disease, or some other acute or chronic condition that requires you to receive ongoing medical care.
Under the Affordable Care Act, insurance companies were not allowed to charge policy-holders higher premiums if they had a pre-existing condition or as a function of their age. If passed, the proposed Graham-Cassidy act will change that and allow insurance companies to raise premiums significantly for those with such conditions. The nonpartisan Center for American Progress says that over half of American adults have one or another pre-existing condition, as do one in four children. That means that while insurance may be technically "available" to them, it may no longer be affordable, especially since over 30 states will be losing Medicaid funding which supports coverage for those with lower incomes or disabilities.
In addition, this bill will take more than $8 billion from MA on an annual basis by 2026, and it will hurt many other states as badly. It destroys funding for Medicaid and opioid programs. Even worse, it's going to be put to a vote before we have any feedback from the Congressional Budget Office on the number of people who will lose their healthcare coverage.
I try to keep this blog a-political, but this battle has become one about winning and losing, rather than one about the health of the American people. I urge you to call your senator asap since the vote will come around September 26. Your voice deserves to be heard to protect your own healthcare quality, availability, and affordability. Alternatively, you can call the main senate switchboard at 1-202-224-3121 and be connected with his or her office. The aides who answer the phone are charged to be pleasant, take your name and zip code (to ensure you're a constituent), and your message. If you have a personal story or reason for calling, by all means share it. The aides are responsible to convey that information to their senator daily. Two other attempts at changing this provision of the ACA have been defeated as a result of citizen calls to their senators. I hope you'll make the call, even if you have to leave a voice mail with your name, voice mail, message, and story.
Thank you for helping all of us to protect our insurance coverage against political tampering.