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.
Palliative care is a distinct medical specialty that helps patients and families from the moment of diagnosis. It is intended to foster quality of life and relief from pain, nausea, anxiety, and other side-effects of serious illness and aggressive medical treatments. The people who provide such care are special, with the ability to demonstrate compassion and caring day after day in circumstances that most of us can't imagine. Frequently a care dog is also part of the palliative care team, providing cuddles and comfort for patients and family members and for nursing professionals, who are under constant stress.
Typical medical school curricula don't necessarily train physicians in the techniques of palliative care, so if you're experiencing a serious cancer episode, it's important to ask for a palliative care expert to be added to your treatment team. Palliative care can be provided from the day of diagnosis.
If you're curious how palliative care nurses approach their roles, take a look at this article What's It Like to Be a Palliative Care Nurse? We are all fortunate that such people exist.
Legislation has been introduced on Congress called the Palliative Care and Hospice Education and Training Act (PCHETA) that will provide additional training resources. The American Cancer Society's Cancer Action Network is advocating to build support for this bill, which has a small price tag but a big impact for those coping with the impact of serious illnesses. If you'd like to contact your Congressional Representative or Senator about supporting the bill, you can go to https://www.govtrack.us/congress/members and enter the name of your state to get their contact information. They need to hear from you!
Metastatic breast cancer is breast cancer that has advanced to its most serious stage (Stage IV) and has spread to distant parts of the body, most commonly liver, bones, lungs, and brain. Often when a breast cancer spreads to another organ, the cancer cells in the new location maintain the genetic characteristics of the original breast cancer. They remain breast cancer, and not liver, bone, or another type of cancer. Over time, in spite of chemotherapy and other whole body treatments, random cancer cells can occasionally evade treatment, stop growing temporarily, and reactivate later. They may also develop resistance to treatments being used and require the patient to try one or more new ones. A metastatic cancer Stage IV) cancer diagnosis usually represents the start of a lifelong battle to control disease spread while seeking to maintain a high quality of life.
On June 7, 2017, the New York Times reported that despite the increasing incidence of metastatic breast cancer, especially among young women, and despite the progressive and incurable nature of the disease, five-year survival rates have doubled over the past 20 years. An analysis in the professional journal Cancer Epidemiology, Biomarkers and Prevention attributes this progress to both improved imaging techniques (earlier detection) and improved therapies as genetic markers are being used more actively in matching each patient to the treatment that is most appropriate to their particular situation.
This doesn't mean it's time to declare victory, but it does mean that for those women and men who are living with metastatic breast cancer, there is increasing hope of living with rather than dying from cancer.
Healthcare and healthcare insurance are critically important to each of us, so I've been writing community education articles to help laymen understand the implications of the "debate" that's underway at the national level.
The third chapter of my healthcare information series, discussing different types of healthcare insurance options, is available at
The last chapter, Part Four, deals with a comparison of single-payer vs. private insurance and highlights the potential economic implications of that choice, as it's being considered in different states right now:
I hope these are useful to my readers.
The second part of my community education series about the highly politicized healthcare debate (more like a fight now that we're on the second round of bad bills) is now available on Huffington Post. It addresses the protections built into the ACA that are at risk. This bill is dangerous for anyone who does or will face cancer, and we must band together to stop it.
Please contact your members of Congress to ask them to vote NO on the new AHCA bill if and when it comes up for a vote. Giving states the right to deny coverage for pre-existing conditions or to allow insurance companies to raise premiums for the millions of people with pre-existing conditions could put insurance coverage out of reach for cancer patients. We must stand with and protect each other. The link is at http://www.huffingtonpost.com/entry/59011258e4b00acb75f18465.
Today I published on Huffington Post the first of a series of articles about the current healthcare debate, trying to educate the public about what it's really about. I had the support of a number of healthcare professionals who are part of a healthcare issues community activism team. I'm hoping it will help you understand the issues behind the nationwide debate and to bring them home to their impacts for you.
Just as we all thought we were making significant progress in advancing cancer research and improving the odds of survival for thousands of patients, the Federal Budget "outline" is threatening to take $5.8 billion out of the research budget of the National Institutes of Health. The impact of the potential cuts is described in a March 16 press release from the American Association for Cancer Research:
PHILADELPHIA - On behalf of the entire cancer research community, the American Association for Cancer Research (AACR) was shocked to learn that the Trump administration is proposing to cut $5.8 billion from the National Institutes of Health (NIH) budget in fiscal year (FY) 2018. At a time when extraordinary progress is being made against cancer and many other diseases, these draconian cuts would set research back for decades and also threaten the careers of an entire generation of young investigators working in labs and clinics all over the country who are committed to improving public health and saving lives.
Therefore, we call on members of Congress to stand firmly against this budget proposal. We urge them to maintain the momentum they initiated in FY 2016 when they provided the NIH with a $2 billion funding increase so as to ensure that medical research remains a national priority. Providing robust, sustained, and predictable annual funding increases for the NIH is absolutely required for the benefit of cancer patients nationwide. Since today’s budget proposal by the Trump administration will severely jeopardize the progress we are making in preventing, treating, and curing cancer, the proposal must be stopped in its tracks.
My latest Hufington Post blogpost adresses the differences among standard, alternative, and complementary therapies. It's important to understand that fear of cancer treatment's nasty side effects may steer a patient stray, into "alternatives" that don't help manage the disease in a productive way. If you're considering alternatives to traditional medicinal treatments, you might want to take a look so you can weigh the potential risks with the potential gains.
A news report in STAT in December 2016 shared some shocking but important news: That some cancers have begun to metastasize--that is, to shed cells that go to other body parts--even before the primary tumor is detectable. The report stems from studies that have been underway since 2008 to explore the molecular mechanisms that spur tumor growth and cancer cell proliferation. According to the article, this is most common in breast, melanoma, and pancreatic and pancreatic cancerss. They call into question the "non-invasive" diagnosis that many of us receive through early detection and may hgihlight the need for more basic research into the ways in which cancer cells grow, proliferate, and spread through the body. In this article, several prestigious experts praise the research done to date, but the implications are as yet unclear.
I've just had an Op Ed piece published in a number of Gatehouse Media community newspapers to help educate the public about the patient protections that are at risk if the Affordable Care Act is repealed without thorough deliberation about the impact repeal will have on people with cancer and other serious conditions. For those living on limited incomes, tax credits and health savings accounts will make it more difficult to obtain aequate health insurance. In addition, high risk pools will make insurance more expensive for anyone with a pre-existing condition (nearly half of the population).
I couldn't cover all of the concerns associated with repeal in my Op Ed, but you'll see the patient protection ones in the link provided above. If you're concerned to preserve patient protedtions or have a perosnal sotry about how the Affordable Care Act has affected you or your family, please use these phone lists to contact your Senators or members of Congress. The aides who answer the phone will log in your name, your city or town, and your position on the issue. Remember, there is power in numbers, and your story is as important as anyone else's.
Even though dramatic progress is being made in understanding and fighting cancer in North America, cancer remains a scourge worldwide, especially in less developed and poorer countries. The Cancer Knowledge Network, based in Canada, is a very useful resource on such topics, especially for cancer in kids and young adults.
I was invited to contribute articles for World Cancer Day, February 4. Those four articles provide insights about efforts to scope and locate the cancer problem, scientific developments to solve it, resources and support needed by the scientific community, and what the public needs to know about cancer.
If you're interested in learning more about global cancer, these articles provide insights about the strong best practices sharing that's going on across national borders.
An ACS Cancer Action Network press release reads as follows (direct quote):
WASHINGTON, DC – January 19, 2017 – Today, the Food and Drug Administration (FDA) issued a proposed rule to limit N-nitrosonornicotine (NNN), a known carcinogen, in smokeless tobacco products. This is the first time FDA has used its authority to require a standard for tobacco products. Under this authority, the FDA can require changes to tobacco products, such as removal of harmful ingredients, elimination of flavors, or reduction of nicotine levels, in order to protect public health.
A statement from Chris Hansen, president of the American Cancer Society Cancer Action Network (ACS CAN), follows:
“We applaud the FDA for taking the first necessary step to limit a cancer-causing agent found in smokeless tobacco products.
“The dangers of smokeless tobacco are severe. Smokeless tobacco use is responsible for an estimated 1,600 new cases of oral cancer, 200 cases of esophageal cancer and 500 cases of pancreatic cancer in the U.S. each year. In addition to cancer, smokeless tobacco users have an increased risk of death from heart disease and stroke.
“ACS CAN strongly supports the FDA’s implementation of this rule, which over a 20-year period would prevent nearly 13,000 new oral cancer diagnoses and prevent 2,220 oral cancer deaths.
“We encourage the FDA to take the necessary actions to finalize this rule and protect the public’s health from the dangers of tobacco.”
Advocacy on this issue has helped move the ball forward. You can join the Cancer Action Network and get your voice heard at www.acscan.org.
StatNews reports this morning that the FDA Oncology Center of Excellence, a major initiative othe Cancer Moonshot initiative, has just been launched. It creates a clinical review system for drugs, biologics, and medical devices to accelerate bringing safe and effective products into cancer care more quickly. This offers promise for the longer term.
An interesting article in Statnews today highlights the challenge facing both physicians and cancer patients in learning about available experimental treatments. At the same time that patients are dying before finding an appropriate experimental treatment, many clinical trials are cancelled because they couldn't recruit enough patients that qualified. In part, it's because so few people apply, and in part it's because they don't learn enough about the qualifications and potential benefits in time to apply.
If you're facing such a dilemma, you might want to read this story.
This morning, the National Cancer Institute announced an agreement between NCI and six drug companies (more in negotiations to be added) to create an NCI Formulary that will help accelerate getting new cancer treatments from investigators' labs into clinical trials more quickly. The goal is for NCI to serve as an intermediary to make it faster to explore combination therapies, which are currently getting a lot of attention as potential new directions for treatment. Negotiations are underway right now regarding 15 therapeutic agents from these six companies and with many more companies to add many more agents to the Formulary. At a time when advocates have been pressing for more Federal funding for cancer research, this initiative (an offshoot of the Cancer Moonshot) is promising. The particular focus is on investigator-initiated studies, which often lack sufficient financial support to prove the merits of new treatments and understanding of new cancer signalling pathways. As the Formulary proves itself, it will become easier to gain the participation of more pharmaceutical companies and to move more combination therapies through the research pipeline.
Signs of hope.
My most recent Huffington Post article helps reveal how leading researchers are learning from Mice about chemo resistance and cancer's microenvironment. It offers promise for more effective personalized treatments. I found it fascinating to tour Dr. Dan Duda's lab at the Steele Laboratories at Mass General Hospital. You too might find it fascinating to read of their work.
The American Association for Cancer Research (AACR) has just released its first set of data from AACR Project Genomics Evidence Neoplasia Information Exchange (GENIE), including de-identified genomic and clinical data from the medical records of over 19,000 patients and 59 cancer types. The data, which maintain patients' personal confidentiality, were drawn from eight major participating cancer centers worldwide. The data will be available to researchers and clinicians to help them discern correlations between genomic information and clinical activities and outcomes. This project reflects the growing trend of using "big data" analysis capabilities (the ability to digest and draw practical meaning and action implications from massive volumes of data) to help in diagnosis and treatment decisions for individual patients.
Within the cancer research and clinical communities, numerous similar data bank initiatives are underway. As such initiatives continue to grow, they offer promise to accelerate both research discovery and personalized medicine for improved clinical outcomes.
Use of e-cigarettes by children, adolescents, and young adults has risen at a "staggering" rate since 2010, when it was rare. This has driven the nation's Surgeon General to declare a public health emergency and to call for both increased FDA regulation and increased legislative action at state and local levels to include e-cigarette and other nicotine products ini tobacco control laws and programs. Public advocacy may be needed as regulatory modifications are proposed for legislative action. Each of us can speak out to help prevent this predictable public health crisis.
If you're concerned to learn more, check out the article in MedPage Today.
A study released at the Radiological Society of North America (RSNA) 2016 Annual Meeting on November 28, 2016, reports that despite past recommendations by the US Preventive Services Task Force (USPSTF) that women undergo screening every 2 years only until age 74, analysis of mammography results in older women demonstrate conclusively the benefits of continuing screening as long as women have a life expectancy of at least 5-7 years and are willing to take appropriate action based on the test's results. The study was described in written up in the Medscape medical newsletter on Decemer 1, 2016.
A New York Times article was published on November 28 about students at Fred Hutchinson Cancer Center in Seattle discovering a new way of diagnosing CML with a spot of blood on a piece of special paper. It's a fascinating tribute to the creativity of young investigators who are inspired by the lack of limits on what can be done to solve a scientific problem with a little ingenuity. Fascinating reading, and another inspirational tidbit for investing in the research work of young investigators. To do more of that, donate to the research programs of the American Cancer Society at www.cancer.org. Together we can save lives and create jobs.
Just posted on Huffington Post is my article on why increasing Federal cancer research funding should be an important priority on the President-Elect's leadership agenda. Take a look, and if you like it, please click "like" and share it on your social media feeds. We can make this a priority if enough of us speak out.
Just posted on Huffington Post is my article on cancer caregiving. May we all learn from each others' experiences.