H.O.P.E. Blog

Thanksgiving Thoughts

Thanksgiving ThoughtsHere in Southern Pennsylvania the air has become crisp, the trees are showing off their beautiful fall foliage and we are all preparing for the upcoming Thanksgiving holiday. Families and friends will come together to celebrate and to give thanks for their blessing and good fortunes. For cancer patients, it can be a rather bittersweet time. After all, who can be thankful for such a terrible disease as cancer? In reality there are many reasons a cancer patient can be thankful.

Consider this— the survival rate of cancer patients in the United States has increased dramatically in the past 50 years. Cancer was once considered a death sentence. It was a disease that was often inoperable and responsible for a very slow and painful death. As our understanding of cancer has grown, so has our ability to combat this disease. While there is no magic cure for all cancer, advancement in treatment and drug development has had a significant impact on the effectiveness of treatment. Surgeries are less invasive resulting in faster recovery times and fewer life-threatening complications. Where patients used to take months off for surgery and treatment, many now find themselves able to continue working during their course of treatment. Today, more advanced testing methods lead to earlier diagnosis of cancer, which in turn translates into higher survival rates because the disease is caught in its earlier, more treatable stages.

Cancer was once a word whispered in private conversations. In the 1960’s cancer patients were rarely seen outside the hospital. Today cancer patients lead the fight for funding and support. The cancer support community has exploded over the past couple of decades. Many women now share their baldness, brought on by chemotherapy, as a badge of honor. Organizations such as H.O.P.E. are being called upon more then ever to answer the call for help. Social media has helped raise awareness of the battles that cancer patients must fight on a daily basis. A disease that used to be surrounded by ignorance and misunderstanding is now openly spoken about on television and in our homes.

So yes, in the face of adversity there are still some things to be thankful for. We should be thankful that we live in a country where a cancer patient can get treatment for their disease by some of the world’s greatest doctors and nurses. We should be thankful for the millions of people that take to fundraising in an effort to provide much needed research dollars, giving scientists the help they need while searching for a cure. We should be thankful for the incredible number of all-volunteer organizations like H.O.P.E. that offer assistance to cancer patients and their families. We should be thankful that we live in an age of enlightenment, where people with diseases such as cancer are shown compassion instead of being locked away not to be seen.

At this very moment there are millions of refugees fleeing the war-torn country of Syria. Among those millions of people there are cancer patients. People sleeping outside, in the elements, with little food and no medical care to speak of. This Thanksgiving, please take a moment to offer a prayer for these people. Also take a moment to offer a prayer of thanks for the many blessing we have—while life with cancer can be challenging, it can also come with some blessings.


New Breast Cancer Screening Guidelines—New Confusion?

Breast Cancer ScreeningLast month my 64-year-old sister-in-law was diagnosed with breast cancer. The lump in her left breast was detected by her yearly mammogram, which she continues to have done, despite no history of breast cancer in her family. I say this because for several years now the push has been against ‘too much screening.’ The claim by health care organizations such as the World Health Organization, the American College of Physicians, and the US Preventive Task Force is that too much screening leads to ‘false positives,’ which result in further screenings, invasive biopsies, and risky treatments that can be unnecessary and detrimental to a patient’s mental health.

In keeping with this new trend the American Cancer has come out with its first new set of guidelines in nearly two decades, and some of the recommendations are stirring up a bit of controversy. Essentially the ACS is saying women should begin yearly screening at age 45 but at age 55 switch to every two years. (Interestingly, the United States is the only country in the world that has recommended yearly mammograms at any age.)   It is important to note that these recommendations are for women with an average risk of breast cancer, and it is also important to know that yearly mammograms will still be paid for by health insurance. Here is a summary of the new ACS screening guideline:

  • Women with an average risk of breast cancer – most women – should begin yearly mammograms at age 45.
  • Women should be able to start the screening as early as age 40, if they want to. It’s a good idea to start talking to your health care provider at age 40 about when you should begin screening.
  • At age 55, women should have mammograms every other year – though women who want to keep having yearly mammograms should be able to do so.
  • Regular mammograms should continue for as long as a woman is in good health.
  • Breast exams, either from a medical provider or self-exams, are no longer recommended.

Notice the reduction of testing after age 55, from yearly to every other year. Had my sister-in-law followed that guideline, her small tumor theoretically could have had another year to grow.

So what should these women with ‘an average risk of breast cancer’ do? In my sister-in-law’s case, possibly poor lifestyle choices were a factor in her disease (lifelong smoker; iffy diet); for others who have lived a pretty healthy life, should they go ahead and skip a year? One common guideline all the professionals do seem to agree on is this: consult with your health care provider about it all.

Caring for the Caregiver

hope caregiverCaring for the Caregiver

by Jeff Hoffman

Every day across this big world of ours, there are countless numbers of people who wake from a restless sleep to face the daunting task of caring for their loved one. The Caregiver, an unsung hero - a person who demonstrates unconditional love by doing some of the most unpleasant and thankless tasks you might imagine. Yet, they do it without a complaint, often alone and abandoned by friends and family to face their new reality in solitude.

Sometimes the reward is sweet victory over a disease. Unfortunately, there are also times when the bitter taste of defeat lingers for years after the loss of their loved one. More times than not, their sacrifice is quickly forgotten.

Most Caregivers never ask for the job. In some cases it is thrust upon them without even as much as a “please”. Whatever the circumstances and whatever the relationship, the Caregiver steps forward and assumes the responsibility for preparing meals, cleaning home and clothes, tracking and administering a barrage of medications, and serves as a liaison between their sick loved one and the rest of the world.

They find themselves receiving the brunt of abuse from family and occasionally by the loved one they are caring for. They will go for weeks without leaving the house, ignoring their own personal care and health, putting their emotional and mental well-being on the “back burner”, all in an effort to make sure their sick loved one receives the attention and care they need.

It is reported that approximately 44 million Americans provide care each year for adult family members and friends. Here are some startling statistics from the Family Caregiver Alliance:

1. Most caregivers are employed.

2. Nearly half of all caregivers provide fewer than eight hours of care per week, while one in five provides more than 40 hours of care per week.

3. Caregiving can last from less than a year to more than 40 years.

4. Eighty-three percent of caregivers care for relatives with 24% living with the care recipient.

Studies show the “typical caregiver” in the United States is a 46-year-old woman who works outside the home and spends more than 20 hours per week providing unpaid care for her mother.

Think for a moment about someone you might know who provides care for a loved one. Now look a bit closer and try to determine how much “outside” help this person might receive in providing that care. For the most part, the family caregiver has remained invisible to society; and the medical community provides only minimal physical and emotional support to the caregiver.

The incredible reality is that as the “boomer “generation reaches maturity, the 65+ age group will double to 70 million people by the year 2030. As a result, the number of family caregivers will increase. This will ultimately impact family dynamics as the demand of caregiving takes its toll on personal relationships, family income and eventually physical and emotional decline of the caregiver.

Over the next few issues of the HOPE Lifeline Newsletter, we hope to take a moment to thanks the countless caregivers that serve our patient community. We will provide some useful tips on how to better manage the daily pressures of caregiving and attempt to raise awareness as to how each of us can offer help to the silent group that tirelessly face the daily challenge of caring.

Vitamin D and Coffee

hope news coffeeby JEAN LILLQUIST (Editor, HOPE Lifeline Newsletter)

It’s been a while since we’ve covered recent discoveries and breakthroughs in medicine, particularly the world of cancer. And as these discoveries are made, it’s becoming in-creasingly clear that everything is interconnected.

Coffee is good for almost all that ails you.

Let’s start with something most of us start our day with: coffee. Do you remember when coffee was the bad guy? That is no longer remotely the case. Studies are now showing that coffee consumption can help ward off heart disease, stroke, and some types of cancer. (The studies defined a cup as an eight-ounce serving, and needless to say not the fancy-schmancy concoctions.)

  • Drinking coffee has been linked to a reduced risk for skin cancer. Drinking four or more cups a day was associated with a 20 percent risk reduction compared with those who drank none. (This doesn’t hold for decaf coffee or melanoma in its earliest stages.)
  • Women who consume three to four cups of coffee a day may be reducing their risk of endometrial cancer by 18 percent. One theory for this is that coffee reduces estrogen levels and an imbalance of estrogen heightens the risk of this type of cancer. Another is that the oxidants in coffee may help slow or prevent cell damage.
  • Regular coffee consumption is associated with a significantly reduced risk of develop-ing Type 2 diabetes, with the lowest relative risks (about a third reduction) seen in those who drank at least six or seven cups a day. This includes both caffeinated and decaf coffee.
  • Consumption of two to six cups a day is associated with a lower risk of stroke.
  • Four cups of coffee a day is associated with a lower risk of heart disease.
  • Drinking coffee is also associated with lower risks of Parkinson’s disease, lower cogni-tive decline, and a potential protective effect against Alzheimer’s disease.
  • Colon cancer risk can be reduced by diet and vitamin D.

Diet can affect colon cancer.

  • Seventh-Day Adventists were recruited nationwide by researchers because they ab-stain from smoking and drinking and are encouraged to eat a vegetarian diet. At the end of the seven-year study it was found that those who ate very little meat (two ounces a day) had a 21 percent reduced risk compared to non vegetarians. And so-called pesco-vegetarians, who ate fish once a month or more and other meats less than once a month, reduced their risk by 42 percent compared with non vegetarians.

Higher levels of vitamin D have been associated with a reduced risk of colon cancer.

  • Researchers have found that there is a link between vitamin D and colorectal cancer. People with colorectal cancer tend to have low levels of vitamin D. People who have high levels of vitamin D in their body are less likely to develop colorectal cancer. People with higher vitamin D levels who already have colorectal cancer are more likely to have better outcomes and are less likely to die from cancer. Vitamin D interacts with the immune system to prevent the growth of malignant tumors. This can best be achieved by a combination of diet, supplements, and 10 -15 minutes in the sun.

Heart Disease in Women—An “Unsung” Killer

hope news heart diseaseBy JEAN LILLQUIST (Editor - HOPE Lifeline Newsletter)

When it happened to her husband, it was the classical “Hollywood Heart Attack.” The sudden grimace of agony, clutching of chest, and collapse. When it happened to her thirty years later, the symptoms were flu -like: vague feelings of unwellness; a fluttery sensation at the sternum, rising into the throat; mild chest pressure; sudden nausea, vomiting, some diarrhea. Her doctor was so unworried that he simply told her to come in the next day for an EKG. His lack of concern changed, however, when the results of the test and then an echocardiogram came back: she had had a substantial heart attack, less than mas-sive, but more than mild. The woman and her doctor were both stunned.

But they shouldn’t have been. The biggest killer of American women is not breast cancer, as many believe, but heart dis-ease. In fact, it kills more than all kinds of cancer combined.

It has only been in the past couple decades that the differences in heart attacks between men and women have been ac-knowledged. In a 1996 national survey of doctors, two-thirds were unaware of gender differences in symptom and warning signs of heart attacks. Whereas for men these symptoms are most likely connected to the chest and upper body, women’s symptoms can encompass their jaw, neck, throat, back, shoulders, chest, arms, diaphragm, and abdomen. They may experience dizziness, sweating, shortness of breath, unaccustomed fatigue, or insomnia. The nearly half a million women who are stricken annually by heart disease tend to develop and die from it ten years
earlier than men, and they are likelier to die within a year of a heart attack. And here’s one more scary statistic: Almost two thirds of women who die suddenly of a heart attack had no prior symptoms.

Women are slowly becoming more informed, as are their doctors, but another dis-turbing trend has emerged: heart disease is increasing among young women be-tween the ages of 29 and 45. Maybe their doctors aren’t recognizing risk factors and talking to them about prevention, maybe they aren’t taking them seriously when they do report a symptom and dealing with it aggressively enough.

Whatever the reasons, heart disease among women carries risk factors that can be minimized by life style changes where necessary.

  • Stress is a risk factor.
  • Smoking is a known risk factor. While smoking has declined among older women, young women are still doing it.
  • Women on birth control pills who smoke are especially at risk.
  • Obesity and diabetes are risk factors.
  • Physical inactivity can be an even greater risk factor than smoking or obesity.
  • Distribution of fat is a risk factor. Abdominal fat (“the apple shape”) can result in high blood pressure and diabetes, even if a woman is otherwise slender. One’s waistline is more important than her B.M.I. (body mass index).
  • Cholesterol treatment can be a risk factor. A recent JAMA Internal Medicine study showed that “statin users signifi-cantly increased their fat intake and calorie consumption, along with their B.M.I. in the last decade.
  • Chronic lack of sleep (under six hours a night) doubles the risk of heart disease.
  • Depression and lack of social support are risk factors.
  • Two pregnancy-related conditions, pre-eclampsia and gestational diabetes, have been linked to a greater coronary risk years later.

Medicine is catching on and catching up, but as with all disease prevention, it’s best to be pro-active. This means living as healthy a lifestyle as possible and letting your doctor know when you’re experiencing a symptom unlike any you have experi-enced before.

Lost in Transition After Cancer

salueika jaouad hopenewslettersmallBy Jean Lillquist (Editor HOPE Lifeline Newsletter)

When Salueika Jaouad was 22, she was diagnosed with Acute Myeloid Leukemia and a rare blood disorder called Myelodys-plastic Syndrome.  A recent graduate from Princteon with a degree in journalism, she had planned to work in northern Africa as a foreign correspondent.  Instead, she turned her reporting skills to shining a spotlight “on a group of people too often voiceless – the 70,000 young adults diagnosed with cancer every year.” For three years Jaouad wrote a regular column titled “Life Interrupted” for the New York Times in which she talked about how cancer had affected every aspect of her life, from work to travel to family and friends to the value of having a dog. Jaouad had her final chemo treatment in April of 2014 and has been declared “cancer free.” However, this has presented a new set of, if not problems, nevertheless difficult changes in her life.  Following are some excerpts from her latest “Life Interrupted” blog post, this one titled “Lost in Transition After Cancer.”

“It took me a long time to be able to say I was a cancer patient.  Then, for a long time, I was only that: A cancer patient. Now that I’m done with my treatment, I’m struggling to figure out who I am.  On paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger.  The constant flood of doctors’ appointments, blood tests and phone calls from concerned family and friends have trickled to a slow drip.  But off paper, I feel far from being a healthy 26-year-old woman.

“My disease has left countless invisible imprints in its wake: infertility, premature menopause, a thyroid condition, chronicfatigue and a weakened immune system that sends me to the emergency room on a regular basis.  And that’s just the short list.  Then there are the demons of depression and the fears of relapse that sneak into my head just when I think I’ve gotten a grip.  The rattle of a cough in my chest, a strange bruise on the back of my leg,  a missed call from my oncologist;  each of these triggers rips me out of my fragile, new reality leaving me to wonder:  what happens if the cancer comes back? Will I ever feel normal again?  And most daunting of all, how do I move forward with my life?

“Writing about all this has not come easily to me.  It is hard not to speak in clichés about cancer.  It can be even harder not to feel as if I have to live up to those clichés....I know that I am one of the lucky ones, and I am deeply thankful to be alive. In writing about the problems I am facing now, I worry about sounding ungrateful or worse yet, insensitive to my friends in the cancer community who may never go into remission...

“I’ve spent the last year of my life searching for Suleika B.C. (before cancer).  I’ve looked for her all over New York City – but the more I look, the more I’m beginning to realize she no longer exists.   There is no going back to my old life.  The problem is I don’t know how to move forward either.  I’m not alone in feeling this way.  A growing body of evidence suggests that cancer survivors continue to struggle with medical, financial, professional, and psychosocial issues long after the end of their cancer treatment.  For many, the experience provides a renewed sense of life and purpose, but the task of rebuilding your life aftersomething as devastating as cancer can also be a deeply disorienting and destabilizing one.  A report last year by the American Cancer Society, in collaboration with the National Cancer Institute, estimates there are almost 14.5 million cancer survivors alive in the United States today, and that number will grow to almost 19 million by 2024.  Although more and more Americans are surviving cancer thanks to early detection programs, new treatment regimens, and awareness campaigns, much remains to be learned about the short and long term issues faced by survivors.  With long-term survival comes a new challenge: how to keep cancer survivors healthy and emotionally stable after treatment ends....

“‘Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,’ Susan Sontag famously wrote in ‘Illness as Metaphor.’ But she doesn’t talk about this no man’s land that exists between the two kingdoms, inhabited by people like me who are neither sick nor well. And there are no protocols or discharge instructions, no roadmaps or 12-step plans to guide me back to the kingdom of the well.  The road back is going to be my own.”



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