Patient Navigator

One of the best cancer websites is managed by the American Society of Clinical Oncology (ASCO).  It contains incredibly useful information on everything a cancer patient needs to know, from cancer education, management, financial help, treatments and survivorship.

Each year, the American Society of Clinical Oncology conducts an independent review of advances in cancer research that have the greatest potential impact on patients’ lives. This year, Clinical Cancer Advances 2011 features 54 significant studies, including 12 that the report’s editors consider major advances.

This year’s Clinical Cancer Advances report also recaps the year’s most important cancer policy developments and ASCO policy initiatives that are likely to influence cancer care over the coming years. These include developments that could help to accelerate the pace of clinical cancer research progress and ensure access to quality cancer care for patients.

Anyone who is impacted by or interested in cancer research, treatments and care should look at this report.

This article and more can be read on the Patient Navigator December 2011 newsletter.

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Submitted by guest editor Debora Harvey, Patient Navigator LLC

I went to pick up my hearing aids yesterday.  These are fairly new, only a few months old, yet I have had to send them back to the manufacturer twice so far, and I am not confident that they will work well even now.  The irony is that I paid $3,000 out of pocket for these assistance devices.  They are not covered by my health insurance.  I do have a “discount program” that enables me to go to a provider that has an agreement with my insurance provider, who supposedly charges me less than the current market rate for these devices.  Unfortunately, I am much less than satisfied by both the quality of the hearing aids, and the competence of the “audiological specialist” to whom my insurance company has steered me.

I was in my twenties when diagnosed with a hearing loss significant enough to need amplification. I resisted the need for hearing aids, but the doctor explained to me that, unless I could get the sounds to my brain, my brain would slowly lose the ability to recognize sounds and speech.  Even if my hearing were miraculously restored, I would be unable to understand the words people spoke.

According to the American Speech Language Hearing Association, hearing loss is the number one birth defect in the United States.  Twenty percent of children have some sort of hearing or speech disorder.  Half of the 28 million Americans with a hearing disability are under the age of 50.

Among other statistics, the National Institute on Deafness and Other Communication Disorders (NIDCD) reports that:

• Approximately 17 percent (36 million) of American adults report some degree of hearing loss.
• There is a strong relationship between age and reported hearing loss: 18 percent of American adults 45-64 years old, 30 percent of adults 65-74 years old, and 47 percent of adults 75 years old or older have a hearing impairment.
• About 2 to 3 out of every 1,000 children in the United States are born deaf or hard-of-hearing. Nine out of every 10 children who are born deaf are born to parents who can hear.

Yet many insurance companies significant limit coverage of audiological services, if indeed they cover them at all.   Medicare, the primary insurance for millions of older Americans, does not cover hearing aids or eyeglasses, basic needs for people who are losing the acuity of sight and hearing as they get older.

It is a matter of economics.  In order to keep private or group premiums affordable for individuals or employers, these type of assistance devices are excluded from coverage.  If Medicare were to include this coverage, its budget would be hundreds of millions of dollars more every year; dollars found in tax increases.

ASHA has an active advocacy program working to improve disability benefits in general, especially those relating to hearing disabilities.   Take a look if you or someone you know needs help.

To learn more about hearing loss and other communication disorders, visit the NIDCD Health Information site.

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I received the news last week – two more friends have been diagnosed with breast cancer.   I cried.  This is the fourth friend in less than two years that has been diagnosed with cancer – a diagnosis that is frightening, life-altering and potentially life-ending.

This isn’t fair.  Why is this happening?

These are all women in their 30′s and 40′s.  None of them scores high on the list of risk factors.  My friend Nadine eats very well – almost no refined sugar, lots of vegetables and healthy complex carbs, proteins.  She breastfed her children for years.  She exercises every day.   She even rode her bicycle to and from chemotherapy appointments – a huge inspiration to everyone!  Elaine, who has just received her diagnosis, is the mother of a still-nursing infant.  Her whole family eats organic meats and produce, locally grown as much as possible.  She is not obese.  They exercise and try to minimize the toxins in their environment.

With so many of the risk factors removed, why are they still getting cancer?

It makes me so very angry that the only answer is “we don’t know.”  Sometimes lightning just strikes and we don’t know why.

To each of my friends, I have reached out to offer what help I can.  I have given them a copy of Patient Navigator’s “Cancer Diagnosis – 10 Things You Need to Know.” I have offered to help with their family responsibilities, research treatments and go to appointments with them.  I offer food and support.

It doesn’t feel like it is enough.  Especially when they look at me and ask ‘Why?”

Guest editor:  Debora Harvey, Patient Navigator LLC

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This month’s educational newsletter covers the following topics:

Rising Costs of Cancer Care vs. Cancer Prevention

What’s on the Health Reform Horizon?

Food Science – Part 5

Come take a look and become a subscriber!

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In our society, women are generally conditioned to “play nice” and work well with others.  Unfortunately, this can easily translate into failing to be assertive and advocate for ourselves when it is needed.

I recently was asked to do some research about obtaining a second opinion for a friend looking into treatment options.  While I was investigating, I came across a profound website and video called “Give me a Second” which clearly and provocatively illustrates the reluctance of many women to seek additional opinions when faced with a serious medical treatment decision.

According to the website, seven conditions that for which women should absolutely seek a second opinion include:

1. A diagnosis of cancer, especially breast or gynecological
2. Heart Condition/recommendation for bypass surgery
3. Diagnosis of a brain tumor
4. Unresolved menstrual/gynecological problems
5. Autoimmune disease, such as lupus or rheumatoid arthritis
6. Irritable Bowel Syndrome
7. Varicose Veins

Although these conditions vary in severity, they have a commonality – there are substantial variations in the recommended treatments for each, ranging from the minimally invasive to the more conservative and aggressive.  Each approach has its own risks and benefits which need to be taken into consideration with each individual’s own specific diagnosis and preferences.  There is never a one-size fits all treatment for any medical condition.

Why are people so reluctant to pursue a second opinion? The reasons range from fear of delaying treatment for even a day or a week, to concern of disappointing or angering the initial doctor, to simply being uncomfortable speaking up for ourselves.  Unfortunately, not all doctors respond positively when advised that their patient wants a second opinion on a diagnosis or treatment plan, and not everyone is aware that the option of speaking with another doctor even exists.

But in the case of the conditions listed above, and many others, seeking a second opinion may be a life-saving move.

CancerGuide.org provides a comprehensive summary on seeking and evaluating a second opinion for cancer diagnoses and treatment planning.  You can also look at the fact sheet from the American Society of Clinical Oncology.

Having more than one opinion from specialists in the field can make the patient more confident that the diagnosis and treatment regimen is the correct one for them, creating a more positive and trust-based relationship between the patient and care providers.

Guest editor:  Debora Harvey, Patient Navigator LLC

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Please visit our January newsletter.  This month’s topics discuss:

• the launch of the new Patient Navigator website with additional products, services and discounts for our clients

• the National Cancer Institute’s reorganization of the system of clinical trial cooperative groups and how that should improve the efficiency of clinical trials in the age of molecular oncology

• introduction in our Food Science series of the acid-alkaline balance in our food as another way to plan a healthy diet

We welcome your comments and suggestions for future articles!

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Back pain seems to hit many of my friends with regularity.  This can be debilitating, undermining the ability to work and interact with families.  Chronic pain often leads to depression.  There are many different causes of lower back pain, each with its own recommended solution.  Surgery is often an option and can help in many cases.  But it’s worth exploring other, less invasive remedies first.

Recently, I was reading an article in the online Natural Health magazine that detailed some alternatives that are available to those looking for a complementary solution to their pain.

The author compiled approaches to back pain from an orthopedic surgeon, a yoga therapist and a chiropractor.

The surgeon diagnosed the most probable cause of the pain as degeneration of discs due to genetics, injury or too much sitting.  The recommended treatment included rest, alternating heat and cold packs and stretching, for acute pain.  For chronic pain, he recommended avoiding repetitive injury, improving core strength, and stretching.  Surgery would be an option for those who are not helped by these methods.

The yoga therapist indicated that “chronic pain sufferers often are frustrated and depressed; they feel betrayed by their bodies.”  She said that yoga helps these feelings because of the emotional component, which helps sufferers rebuild body confidence.  She recommended gentle yoga, with conscious breathing to calm the nervous system, thus reducing pain-causing inflammation in the body.  Core stretching and strengthening poses help to develop the muscles supporting the spine. Similarly, pilates exercises also help to build core strength and prevent injury.  Regular pilates work frequently restores function and helps to manage or eliminate pain.

Yoga therapists and other complementary medicine practitioners can be found at Alternative Health Directory.

The chiropractor said that back pain can be caused by joints around the spine becoming constricted (by long hours of sitting), creating muscle and ligament tightness.  He suggested that a chiropractic adjustment would stretch tight ligaments to improve joint motion and position. He indicated that an adjustment might not be necessary; that chiropractors also use ultrasound, massage, and electrical stimulation (TENS) to help ease back pain.  One to six visits are generally enough for relief.

To learn more, visit the American Chiropractic Association or to find a chiropractor who treats the children and the whole family, visit the International Chiropractic Pediatric Association.

I would have liked to have seen a contribution from an acupuncturist in this article, as I believe that this treatment offers tremendous benefits in certain situations.  Both conventional and complementary treatments have their place for most conditions.

For good medical summaries of lower back pain, visit the National Institute of Health website on back pain or the Spine Health website.  Another site we recommend is Spine Universe which has excellent information on every type of back pain with recommended treatments.

Prevention  is the key to living a pain-free life, so always stretch, stretch, stretch and try to practice yoga or pilates to strengthen your core.

Contributed by Debora Harvey, Patient Navigator LLC

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Many people experience depression during the holiday season. This is not surprising given that we are bombarded with loud Christmas music wherever we go, incessant advertising and a non-stop drumbeat to shop, buy, spend and create the perfect Hallmark holiday. It is hard not to feel stressed out if you then add the pressure of entertaining, houseguests and a long list of expectations.

Now imagine trying to face all this when you are grieving the loss of a loved one.

It is very hard.  It is painful.  It is unbearably sad.

I lost my mother very suddenly and unexpectedly in May 1990, when she was 63 and I was 31.  I made the decision to skip Christmas entirely that year – no tree, no gifts, no decorations.  I simply could not bear it.  Fortunately, my boyfriend (now husband) understood and supported me, and there were no children to worry about back then. It was the best I could do.

The pressure to go along with the holidays is intense.  Here are my own tips on how to get through them if you are grieving.

1.  Don’t let anyone pressure you or try to tell you what will make you feel better.  Only you know what helps.

2.  Remember your loved one in whatever way seems right – a walk in the woods, a prayer service, watching their favorite movie, setting a place at your table.  You don’t need anyone’s permission or concurrence.

3.  Don’t be afraid to tell people that it really is not a Merry Christmas or Happy Holiday for you.  Let your colleagues at work know that the season is hard for you and ask them to understand if you are distant.

4.  Learn to say no.

5.  Give yourself permission to mourn.  It is normal and necessary.  And then tell yourself gently, over and over, that you will not always feel this way.  And, in time, you won’t.

I’ve learned a great deal over the years about loss and grief.  I’ve learned to grow from each loss in my life, but it has taken a lot of work and faith.  If you are grieving this holiday season, you are not alone.  But please know and believe, with all your heart, that you will not always feel the way you do now.  Time does heal.  Things will get better.

For more information on grief and the holidays, I suggest:

Therese A. Rando, PhD.  Grieving:  How to Go on Living When Someone You Love Dies. (Note:  This book saved me as I grieved the loss of my mother).

Elaine Tiller, M.Div.  When Grief Comes Home for the Holidays, How do you Manage?

Capital Hospice.  Good Mourning: A Resource for Healing.

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I have been reading a book called The Strong Women’s Guide to Total Health. I like this book, not only for its great title, but because it is  easy to read and understand, with sensible health information.

As I was reading the section titled “Standing Strong; Our Living Framework,” I began to think about mothers and grandmothers.  When I was a child, my maternal grandmother seemed to be a giant – tall and strong. By her 90th birthday, she had lost more than 6 inches in height and had very little muscle tone.  She had absolutely no interest in exercise, satisfied that walking her dog and weeding her garden were quite enough.

My 87 year-old mother-in-law is now shorter than my 10-year old son.  She, too, has lost a substantial amount of height, strength and stamina. Whenever we mention any sort of exercise, or nutritional advice, she nods politely, but I can tell she is mentally brushing us off.

On the other hand, my mother tries to eat a diet that promotes bone strength.  I take 1200 mg of calcium/day, and do weight bearing exercise. My 13-year old daughter grumbles, but agrees to take her calcium and vitamin D supplements most of the time.   What will this mean as we age?

Well, the hope is that our bones, muscles and connective tissue will be strong enough to sustain us through 9, 10 or more decades of high-quality life.  Building strong bones at an early age – during childhood and adolescence – is our best defense against developing osteoporosis later in life.  But no matter how old you are, it is never too late to start taking care of your bones.

Some factors that affect your bone health, such as age, gender and genes, are beyond your control.  However, lifestyle choices, especially diet and physical activity, are responsible for up to 50% of bone mass and structure. Getting enough Calcium and Vitamin D in your diet, and some sort of weight bearing physical activity are highly recommended for people of all ages.

More information about prevention of osteoporosis and age-related bone degeneration can be found at the The National Osteoporosis Foundation website.

You can also visit the excellent women’s health site from the Department of Health and Human Services.

Guest Editor, Debora Harvey, Patient Navigator

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