Tuesday, September 1, 2009

Understanding Cancer Care Disparities

While the United States offers the most advanced cancer treatment in the world, issues of race, culture, demographics, education, economic status, institutional prejudice and discrimination have lent themselves to the reality that not all Americans are offered the same resources for cancer prevention, diagnosis, treatment or follow-up. But in the past decade, cancer disparities in minority and underserved groups have become the focus of many of us in the cancer community.

Many of us acting as patient advocate pioneers in the nonprofit sector and/or medical field have implemented unique programs to improve cancer prevention through health education initiatives, access to care grants and programs, post treatment follow-up education and outreach in our communities and through social media networks. Many of us are very passionate and motivated by our own personal experiences or the experience of friends, family and loved ones.

While much attention has been focused in recent years to federal and state governments that provide nonprofits, medical clinics, hospitals and teaching institutions with annual grants and funding to create programs that assist the indigent with access to care and address the multicultural and psychosocial issues of general health education and cancer prevention the truth is these initiatives are simply not enough and have fallen short again and again from their stated goal -- they have made tremendous progress in their public relations and media image yet continue to "educate" patients "after the fact" and/or provide inadecuate services to their "target market".

In addition, research funded by the government aims to find underlying causes and solutions to overcome the barriers to equal cancer treatment (access to care) for all Americans. The statistics that prompted this funding initiative have been gathered by various entities for a number of years and will continue to be gathered, at the very least, for the next decade. The National Cancer Institute's Center to Reduce Cancer Health Disparities (crchd.nci.nih.gov), created to "reduce the unequal burden of cancer in our society" has gathered statistics showing that while all deaths from cervical cancer are preventable, 4,000 American women died of the disease as early as 2005.

What's more, researchers even know the predominant demographics of these women: African American women in the South, Hispanic women (specially along the Texas-Mexico border), Vietnamese women and Caucasian women in Appalachia and the rural Northeast. These findings should give us some pause for reflection and the clearly profound message the research has unwittingly revealed to us all. This is the United States of America yet we continue selectively ignore to openly discuss the racial divide that exists even in our most basic of human needs and rights, which is preventive healthcare.

Another study found that African American patients are less likely than whites to receive recommended chemotherapy for stage 3 colon cancer. Indeed, an African American man is more likely to die of cancer than his caucasian counterpart despite an overall decline in the rate of death from cancer. African Americans (regardless of sex) experience higher mortality with cancers of the prostrate, colon, breast, cervix and lung than a white patient with a comparable tumor and medical history !

Native Americans, which include more than 560 federally recognized tribes that speak 217 native languages, have the poorest survival rates from all cancers combined than any other ethnic groups here in the United States of America. Similarly, less educated Americans who live in rural areas are less likely to have a family doctor and follow prevention and screening recommendations for the general population.

Statistics for the Hispanic population are equally disappointing. According to data compiled by the Intercultural Cancer Council (http://www.iccnetwork.org/) cervical cancer incidence is two to three times higher in Hispanic women than in white women and only 38 percent of Hispanic women age 40 and older have regular mammograms. While Hispanics represent about 12 percent of the U.S. population, they make up 25% (percent) of the country's uninsured.

According to a report on cancer health disparities commissioned by the Department of Health and Human Services in 2005, minority and underserved populations are more likely to be diagnosed with and die from preventable cancers and be diagnosed with late stage disease for cancers that are detectable through screenings at an early stage !

In addition, these populations receive either no treatment or treatment that does not meet current standard of care practices and die of generally curable cancers because they do not have the benefit of coordinated specialty care early on in their cancer journey. What's more co-existing disorders are often untreated, they don't receive the benefit of adecuate pain management and/or palliative care.

The research in cancer healthcare disparities continues as the healthcare reform debate rages on. It may be many decades years, even decades before we fully understand and address this aspect of our national health crisis but as of today the general consensus is that there are multiple contributors to healthcare disparities ranging from language issues to biases based on cultural or racial differences, the complexity of the current healthcare system combined with the simple economics equated to the number of uninsured in America today versus the cost of effective cancer care.

No matter what you choose to believe as an indivual, I, as a cancer survivor, caregiver and patient care advocate - see the issue clearly defined and ever present everydat as one of the simplest things to ignore and "dress-up" behind all the excuses and complicated research -- it boils down to the almighty dollar and something as basic as Free access to community health education programs.

Monday, August 31, 2009

Long Term Risks of I-131 RAI Treatment: What You Should Know

In general, RAI (radioactive iodine) is a safe and effective treatment for the thyroid disorders mentioned in the prior blog posts. When RAI is used as treatment for hyperthyroidism, it is difficult to avoid development of hypothyroidism. Hypothyroidism is, therefore, watched for by your medical team and quickly treated with thyroid hormone pills.

Your doctor should discuss with you the risk of a small increase in the risk of developing thyroid cancers after RAI treatment for hyperthyroidism, although this has not been seen in all studies conducted, enough variables have been documented to warrant an informed discussion about the risk versus the individual benefits of RAI treatment for hyperthyroidism.

Although radiation kills cancer cells, it can also damage normal tissues and, over time, transform a small percentage of normal cells into cancer cells. This "second cancer" (if you are a thyroid cancer patient) develops in or near the previously treated radiation field, usually ten years or longer after initial radiation treatment has ended. The most common type of radiation induced cancer is sarcoma.

Importantly, then is that you must always remember that once you have been treated with RAI for any reason at all you need to have regular exams by your physician for the rest of your life. If you change doctors, see a dentist or have any emergency room treatment you must make sure you advise the treating provider that you have received RAI and when. Doses of RAI used to treat thyroid cancers can cause permanent problems with the salivary glands leading to loss of taste and dry mouth. However, precaustions are taken to try to prevent these issues (i.e. using lemon drops or sour candy regularly for the first 14 days after RAI treatment). Temporary or permanent decreases in blood cell counts can also occur.

SPECIAL CONCERNS FOR WOMEN

RAI, whether I-123 or I-131, should never be used in a patient who is pregnant or nursing. RAI given during pregnancy can damage the fetus (baby) thyroid gland. RAI given to a woman who is nursing can get into the breast milk and therefore expose the baby to radiation. Also, pregnancy should be put off a minimum of 6 months and preferably 12 months after RAI treatment since the ovaries are exposed to radiation during RAI treatment. Women who have not yet reached menopause are asked to fully discuss these precautions about the use of RAI with their doctors. There is no clear evidence that RAI leads to infertility.

SPECIAL CONCERNS FOR MEN

Men who receive RAI treatment for thyroid cancer may have decreased sperm counts and temporary infertility for periods of roughly 2 years. A doctor may discuss sperm banking with male patients who are expected to need several doses of RAI for thyroid cancer treatment.

GENERAL PRECAUTIONS FOR EVERYONE

Since I-131 RAI produces radiation, patients must do their best to avoid radiation exposure to others, particularly pregnant women and children under the age of 18, especially infants and small pets. Therefore, there are certain precautions that patients who have been treated with RAI are expected to follow after their treatment. These guidelines comply with the Nuclear Regulatory Commission and will be reviewed with patients by the medical institutions giving treatment on a case by case basis according to the dose used for individual patients.

Importantly, the amount of radiation exposure markedly decreases as the distance from patients increases. Patients who need to travel within six months from the time after receiving I-131 treatment and/or expect to visit federal government buildings are advised to carry a letter of explanation with them from their doctors. This is because radiation detection devices used at airports or in federal buildings may pick up even radiation levels considered safe and non-harmful to others.

Friday, August 28, 2009

Radioactive Iodine in the Treatment of Thyroid Cancer: I-131 Basics

As you probably already know, as a follower of my blog and facebook pages, my baby girl (22 years old, but forever my baby anyway) is a metastatic thyroid cancer patient. Most people simply assume that since thyroid cancer is generally referred to as a type of cancer with high cure rates and survival statistics, it is not a cancer we need to concern ourselves with much.

Well I hate to be the one to have to wake you up from the "fantasy" of a cancer many insensitive medical professionals and ill informed people call the "best cancer you can have".

~~Cancer~~ a devastating word to hear, and a phenomenally frightening diagnosis to deal with emotionally, physically and financially no matter the type, stage or age at onset.

In the case of thyroid cancer, the fastest increasing newly diagnosed cancer in America today, the many long term unknowns for the growing number of young survivors is not as reassuring as orignally thought of. A growing number of young people are developing persistent and/or recurrent cancer in the thyroid bed, many are developing metastatic disease like my daughter. Some may be genetically predisposed to the condition, many others will never know why they hit "the thyroid cancer lottery" at all. Yet another small percentage of survivors will develop another type of cancer somewhere down the line as result of the treatmetn they receive to treat the original thyroid cancer at an early age.

In this section/article I will share with you what nobody told me and you should know about I-131 RAI Treatment for thyroid disorders is the isotope used to destroy both normal and cancerous thyroid tissue.

1. NORMAL THYROID TISSUE:

Small doses of I-131 (5 t0 30 millicures, mCi) are given to destroy or "ablate" overactive thyroid tissue. This usually turns an overactive thyroid gland, with time, into and underactive thyroid gland. Doses of I-131 in the middle range (25 to 75 mCi) may be used to shrink large thyroid glands or goiters that are functioning normally but are causing breathing problems because their large size my compress the trachea (windpipe).

Patients must go directly home after I-131 RAI treatment, although they are asked to follow certain precautions. Temporary worsening of hyperthyroid symptons may occur within the first two weeks of I-131 treatment for hyperthyroidism, which can be easily treated with medicines called beta blockers. This medicine will be prescribed by your doctor. It is also common for patients to experience some temporary discomfort in the thyroid gland or lower neck area within 1 to 14 days after I-131 treatment for hyperthyroidism.

The discomfort may mimic the feeling of a sore throat. Aspirin, Ibuprofen (Advil) or Acetaminophen (Tylenol) may be used to treat discomfort. These side effects may last up to two weeks. The RAI treatment may take up to one to six months to have it's full effect. A small percentage of patients may require a second course of treatment.

2. THYROID CANCER:

Ablative doses of I-131 RAI (50 to 120 mCi) are usually given to destroy any remaining normal thyroid tissue that is commonly left following thyroidectomy. Because of the vital structures in the area of the thyroid gland, the surgeon may leave a small amount of thyroid tissue or gland behind, specially to preserve the tiny parathyroid glands that are embedded along the posterior (back side) of the thyroid gland. The remaining thyroid tissue will usually out-compete any thyroid cancer for the I-131 uptake ! Therefore, any residual thyroid tissue must be removed before persistent thyroid cancer or spread of thyroid cancer (metastatic disease) may be evaluated.

A post ablation thyroid scan is performed 10-14 days after thyroid ablation therapy which may show a large thyroid tumor, but mainly serves as a baseline study for future comparison. Larger doses of I-131 (80 to 200 mCi) are used to destroy residual thyroic cancer or any spread of the tumor to other sites or internal organs (metastatic disease). I-131 has been referred to as the "magic bullet" for treating most common types of thyroid cancer but as with any cancer early detection and early treatment are key in the race to cure theses types of cancers. In the case of my daughter Stevie JoEllie, but rarely in most cases, even higher doses of I-131 are given and most hospitals will generally keep you isolated in a special room anywhere from 24 hours to a few days to avoid exposing other people to radiation.

Please remember unless you receive unusually high doses of I-131 you will be allowed to return home the same day you receive your treatment, although precautions should be taken if you have small children or pets in your home, it is perfectly safe for most patients receiving small to medium I-131 doses to rest at home for a few days before returning to their regular activities. Keep in mind that since salivary glands weakly concentrate iodine, no matter what dose of I-131 you receive, there may be discomfort and swelling of the salivary glands. This can be prevented or greatly reduced by sucking on lemon drops or sour candies for up to 2 weeks after your I-131 treatment.

3. RADIATION EXPOSURE PRECAUTION INSTRUCTIONS AFTER I-131

This list outlines radiation exposure precautions to observe to minimize risks for your family, friends and co-workers after treatment. Please remember to consult your doctor and follow his instructions for YOU -- the precaution durations vary according to the dose of I-131 you receive.

ACTION DURATION

Drink 12 -8oz glasses of fluids daily 2 to 7 days

Do not prepare food for others 2 to 7 days

Do not share utensils with others 2 to 7 days

Flush toilet 2 to 3 times after each use 2 to 7 days

Keep a distance of 6 feet from children 2 to 7 days

Keep a distance of 6 feer from pets 2 to 7 days

Sleep in a separate bed or room 2 to 11 days

Avoid close physical contact such as hugs 2 to 11 days

Avoid kissing and/or sexual activity 2 to 11 days

Limit time in public places 2 to 7 days

Delay return to work or school 2 to 7 days

Do not travel by airplane of public transportation a minimum of 7 days but up to 14 days

Do not travel on prolonged car rides or bus rides a minimum of 7 days but up to 14 days

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