Where do we turn for impartial advice and whose advice can we trust?

For those of us who are mere patients more interested in keeping healthy and not making more out of something than it is, where should we turn for impartial advice, and whose advice can we trust?

By impartial, I mean that the advisor is not a:
  • hospital or practitioner interested in generating more business and/or avoiding lawsuits;
  • drug company interested in increasing divisional profits;
  • equipment manufacturer whose products are responsible for "discovering" cancers; or
  • a researcher interested in being granted additional funding.

Where can I find impartial, informed, consultations on such questions as:

  • What breast cancer screening tests are appropriate and safe for specific age groups and medical histories?
  • What types of screening should we have and when?
  • What is considered old, current, and upcoming technology currently in trials?
  • What can I “safely” use for birth control?
  • Is there such a thing as “safe” hormone replacement therapy (HRT)?

The more I worry about those topics and how they relate to my health, the more research I feel compelled to do. I also question everyone I meet and everything I read. Hence the less sure I become about what is and who has the most “informed/impartial” advice. But black and white answers are very, very, few and far between.

For example, there is an exciting new genetic test that’s able to uncover the possibility of cancer recurrence by a cMethDNA blood assay test cMethDNA blood assay test – which is good. In the long run, a blood test would beat the pants off a mammogram, but it’s early in the test development to leap that far ahead. However, given the current testing and encouraging results, do they know what to do with those test results? Will it lead to better health outcomes as they hope or could it lead to unnecessary additional testing…and worry?

I didn’t start with mammograms until I was in my late 40’s. I wasn’t diagnosed with breast cancer until I was 59 – and then it was a small DCIS tumor that contained invasive cells. Did all those years of testing increase my chance of getting cancer because of the early technology, radiation levels, or compression (stress & injury)? Today, depending on which area of the world I live in, I might not even have had an operation, let alone radiation + 5 years of truly life altering drug therapy. OK, I’m an older woman and they have a lot more data on my age group. But disturbingly, increasing numbers of younger women are being diagnosed with breast cancer. “Younger women” used to be those in their 40’s, now it’s as young as 15!

Are the same reasons causing increased breast cancer in all age groups? The list of suspected carcinogenic substances we’re exposed to on a daily basis is huge – covering what we eat, wear, expose ourselves to, and surround ourselves with in our homes and workplaces. Moreover, many of those substances can unwittingly be passed on to our children. To keep it short for this blog, according to the ACS, CDC, Breastcancer.org, and many others, major known risks for breast cancer in women include:

  • Birth control pills
  • Hormone replacement therapy (HRT)
  • Inherited and acquired gene mutations
  • Radiation exposure
  • Exposure to chemicals with estrogen-like properties and estrogen such as Butyl benzyl phthalate (BBPs) which are commonplace additions found in plastics, cosmetics, lotions, etc. that can accumulate in body tissues
  • Exposure to BPA, phthalates and other xenoestrogens - often found in the lining of cans, in plastics, and in dental sealants
  • Hormones given to the animals we eat plus the cheeses and milk we consume
  • Grilled and charred meats
  • Deficiencies in iodine, Vitamin A and Vitamin D
  • Alcohol consumption

I’d like to touch on two of the biggest hormonal topics because I’ve discussed some of the other possible causes in previous blogs.

Where can young women go for impartial birth control advice, and on what information is that advice based? Dr. Marisa Weiss, MD recently wrote an article for BreastCancer.org , April 23, 2014, discussing "Alternatives to the Pill." In the article, she states concerns related to birth control pills and other contraceptives that use hormones to prevent pregnancies, and the fact that they may overstimulate breast cells thereby increasing the risk of breast cancer. That concern is greater if you:

  • have a strong history of breast cancer,
  • have had breast biopsies show abnormal cells, and/or
  • you and/or your family have a history of breast cancer.

So what are your options if you fall into any of the above categories and are still of childbearing age? According to the article, the World Health Organization and others, advise against using any form of hormonal birth control. By default logic, that leaves the old standbys: condoms, diaphragms, non-hormonal IUD’s (some of which have their own unique issues), and closing off your fallopian tubes. I understand that several condom manufacturers are now producing products without harmful chemicals. Perhaps they are not the most sexy or convenient, but according to the article, condoms and diaphragms help prevent STD’s. Plus all three old-fashioned options are certainly top choices for overall safety and pregnancy prevention.

What if you are considering HRT - on what information is that “impartial” advice based? A recent article by the International Menopause Society in Science Daily, May 2, 2014, states new research has found that the type of HRT a woman takes, and the way it is taken, can have a significantly different effect on genes associated with breast cancer. This finding opens the way to identify which forms of HRT have minimal effect on breast cancer. It also gives the long-term possibility of personalizing HRT according to the genes which a woman expresses.

A recent Swedish study of 30 healthy women, half of whom took synthetic HRT while the other half took E2/P (estradiol gel plus oral micronized progesterone) produced some surprising results. Estradiol is a type of estrogen found in the body so it is considered more natural than the commonly used CEE/MPA synthetic equine estrogen. All 30 participants had breast biopsies prior to and following the study. The researchers confirmed that the expression of 8 out of 16 genes (50%) changed in the CEE/MPA HRT group, whereas only 4 out of 16 genes (25%) changed in the E3/P HRT group.

According to the society’s president, Professor Rod Baber, “This very important study shows that use of HRT combining a transdermal estradiol preparation with oral micronized progesterone causes significantly less expression of genes associated with breast cell proliferation and breast cancer than the more traditional HRT combination of conjugated estrogens plus medroxyprogesterone.

The basic science from this study supports the evidence we have from clinical trials such as the French E3N trial, which shows that the choice of estrogen and progesterone and the mode of delivery is important in reducing any risk of breast cancer possibly associated with long term HRT.”

Do these few studies mean that E2/P is safe or should it too be avoided for those of us who have had breast cancer? There is an immense amount of information from a huge number of sources out on the web and in print. The best you can do is to try to be as informed as possible on every aspect of your research topic, be it mammograms, drugs, or hormone treatments. Q & A’s will hopefully enable you to make an informed decision about any treatment or medication you opt to take for years on end - because ultimately your life could depend on that decision.

What can we take away from the controversy over studies that question the value of annual mammograms?

The recently released results of a 25 year Canadian study of 89,835 women, half of which received an annual mammogram for four years and half of which did not, caused quite a stir last month.  Nearly 90,000 subjects over 25 years is quite a sizable study. The researchers concluded that the death rates from breast cancer and from all causes were the same in women who got mammograms and those who didn’t.  Moreover, the screening did harm to some women. One in five cancers found with mammography and treated as a result were not a threat to the woman’s health and did not need treatment such as chemotherapy, surgery, or radiation. Vast Study Casts Doubts on Value of Mammorgrams, by Gina Kolata, New York Times, 2/11/14. How should we interpret these facts?

Dr. Richard C. Wender, chief of cancer control for the American Cancer Society said “they had convened an expert panel to review all studies on mammography and would issue revised guidelines later this year. He added that combined data from clinical trials of mammography showed it reduces the death rate from breast cancer by at least 15% for women in their 40’s and 20% for women in their 50’s. Translation: one woman in 1,000 who starts screening in her 40’s, two who start in their 50’s and three who start in their 60’s will avoid death by breast cancer.” That’s not a high enough percentage in my books to have a painful radiological test each year. Even dental x-rays are done every 3-4+ years.

The study reached the conclusion about the lack of benefit from mammograms after 11-16 years of follow-up.  “Many cancers, researchers now recognize, grow slowly, or not at all, and do not require treatment. Some cancers even shrink or disappear on their own. But once cancer is detected, it is impossible to know if it is dangerous or not, so doctors treat them all.”

Here’s the aspect of all this that spoke directly to me: “If the researchers also included a precancerous condition call ductal carcinoma in situ, the over diagnosis rate would be closer to one in three cancers, said Dr. Anthony B. Miller of the University of Toronto, lead author of the paper.  Ductal carcinoma in situ (DCIS) is found only with mammography, is confined to the milk duct and may or may not break out into the breast. DCIS accounts for nearly 80% of all cancer diagnoses.

According to Dr. Peter Juni, a member of the Swiss Medical Board and a clinical epidemiologist at the University of Bern, mammography was not reducing the overall death rate from the disease but increasing over diagnosis and leading to false positives and needless biopsies.  Each year in the US, about 37 million mammograms are performed at the cost of approx. $100 per test. , New York Times, 2/11/14

The US Preventative Services Task Force (USPSTF) study was among the first to evaluate the effect of things like biopsies, surgery, unnecessary radiation exposure, and other treatments on women’s health and mortality. They found that the benefits of annual screening did not outweigh the risks of complications from such overtreatment or unneeded therapies for lesions that might not have developed into serious cancer. The study from Canada supported this finding: one in 424 women received unnecessary radiation, chemotherapy, or surgery to treat lesions found on their mammograms.

In sum, what the results suggest is that “the previous advice that all women get regular mammograms may be misguided. For most women with average risk of breast cancer, even detecting small growths, as the current study found, does not necessarily lead to lower death rates from the disease, Mammograms are still recommended, and could be life-saving, however, for women with a family history of breast cancer or who have the BRCA mutations that confer an up to 65% increased risk of developing the disease.  From: Mammogram Study Questions Regular Screening: 4 Takeaways, Alice Park,TIME.com 2/12/14.

As a result of the Canadian study, The British Medical Journal is questioning the logic behind the assumption that “if you can detect breast cancer earlier, you can improve your odds of survival.”

During the initial screening period of the study, a total of 1,190 breast cancers were diagnosed (666 in the mammography group and 524 in the control group). The tumors detected by mammograms did tend to be slightly smaller and were a little less likely to be node positive (meaning they had cancer in them). But the mortality rate didn’t differ much between the two groups: During the 25-year follow-up period, 180 women in the mammogram group died, compared to 171 in the control group. If you consider the entire study: 3,250 women in the mammogram group and 3,133 in the control group were diagnosed with breast cancer. The number who died were, again, virtually identical – 500 women in the mammogram group and 505 in the control group. Fox News.com, 3/3/14.

According to Dr. Marisa Weiss, president and founder of Breastcancer.org, “there’s no one medical definition as to what over diagnosis means exactly. This is an assumption that requires a judgment that’s not necessarily true. Each study has to make its own claim about what the researchers think is work finding and what isn’t.”

These studies only look at survival and not at the other factors like quality of life “fact is that there are other things that are more important to women besides ‘Are you alive or dead?’” she says. “Most women would like to be diagnosed at an earlier stage when they can avoid chemotherapy.”

Technology has also come a long way in 25 years. When speaking about women aged 40-49 with dense breasts, 3-D digital mammography is better than film screen mammography that was used in the study.

According to Dr. Weiss, “in an ideal world, only women in certain subgroups who are at a particularly high risk of getting breast cancer would receive mammograms.” However, “we simply don’t have enough information about who’s most at risk to advise the general female population against getting regular mammograms. Most women who get breast cancer don’t have a family history and don’t have a gene abnormality.”

Right now there is conflicting evidence on the effectiveness of mammograms. No one knows for sure that mammograms are beneficial for every woman.  Again, according to Dr. Weiss, “the risk associated with getting a mammogram – namely the small amount of exposure to radiation (approx. the same amount as a dental x-ray) is minimal. It’s irresponsible to say mammography doesn’t lead to improved survival based on this study. What we’re talking about is the most common cancer to affect women and something that is treatable with early detection…It makes sense to do what you can that’s reasonable to try to find it as early as possible so that you can live as long as possible and so that you can also avoid some of the more aggressive forms of treatment, like chemotherapy.”  Fox News.com, 3/3/14.

So in my books, where does this leave the reported 80% of us who were diagnosed with DCIS? Mine was not node positive, yet both my mother and sister both had breast cancer (neither node positive), but neither my sister nor I have the BRCA gene mutations.  My mother lived nearly 20 years after her last mammogram and did not die from cancer. Do those of us who have had cancer or who at “higher risk” really need annual mammograms or would every other year be sufficient with an MRI on the off years? What about the general, undiagnosed population?

Add to this conundrum - A recent study stated that DCIS is not cancer and should not be treated as such. Seven years ago I was diagnosed with “cancer” because of DCIS. I had a lumpectomy, a new (at that time) experimental version of 3D IMRT radiation therapy, and 5 years of Arimidex.  Maybe, given my family history, I don’t need any more mammograms, just an MRI every other year.  

Ultimately, who/what will determine what I must subject by body to – my oncologist (advice), the medical insurance companies (cost), the AMA and others (opinion), the USPSTF (general industry guidelines), or me?

Why do I feel lost in the crossfire?

Lowering Your Risk of Cancer With Foods

According to BreastCancer.org, January 15, 2014 – No food or diet can prevent you from getting breast cancer. But some foods can make your body healthier, boost your immune system, and keep your risk as low as possible. Below is a collection of information on cancer fighting foods collected from a variety of sources.

Lightly cooked broccoli, cauliflower, cabbage, and sauerkraut - Glucosinolates, found in cruciferous vegetables, can help to eliminate carcinogens from the body before they cause damage to normal cells. Researchers at Michigan State University found that people who ate raw or lightly cooked cabbage and sauerkraut at least 3x per week were 72% less likely to develop breast cancer than those who ate it twice or less. Also, sulforaphane in broccoli reduced the number of breast cancer stem cells (which cause cancer to spread or recur). Broccoli and cauliflower top of the list because they contain indole-3-carbinol which has been found to have protective properties for estrogen-sensitive cancers. Fox News, 2013.

Berries: blueberries, acai, cranberry, pomegranate, and to a lesser degree, raspberry and strawberry – Easy one because they are packed with flavonoids! Flavonoids help regulate insulin levels and help to prevent chronic inflammation. The best flavonoids are anthocyanins which are what gives fruit like berries, grapes, and eggplants their red or dark blue coloring. Flavonoids are known to boost brain power, increase arterial blood flow, prevent clotting, and promote healthy heart functions, and lower blood pressure.

Tomatoes, carrots, sweet potatoes, red peppers, winter squash – Researchers at Harvard Medical School said that women with higher levels of carotenoids have a lower risk of breast cancers. Tomatoes also increase adiponectin levels, a hormone that helps regulate fat and blood sugar levels.

Walnuts – Eating walnuts (25-30 walnut halves) slows the development and growth of breast cancer tumors in mice according to a study published in 2011 in Nutrition and Cancer. The mice that ate walnuts had less than half of the rate of breast cancer as the ones who did not consume walnuts.

Extra-Virgin Olive Oil – This wonder food is loaded with antioxidants and phytonutrients, including squalene which inhibits tumor growth. NBC News, 2013.

ParsleyUniversity of Missouri scientists found that parsley can actually inhibit cancer cell growth. Animals given apigenin, a compound abundant in parsley and celery boosted their resistance to developing cancerous tumors.

Green Leafy Vegetables such as spinach and kale – This is another easy food group because among other nutrients, they are loaded with folate that strengthens your DNA. NBS News 2013.

Fatty Fish such as salmon/tuna/cod – in a six year study from the journal Cancer Epidemiology, Biomarkers & Prevention, women who consumed fish oil supplements had a 32% lower risk of developing breast cancer compared to who didn’t. Capsules are good, but it’s better to eat fatty fish like non-farmed salmon, tuna, cod, and mackerel weekly.

Vitamin D - Multiple studies, including one published in March 2013 in Cancer Causes and Control, have linked higher vitamin D levels with a lower risk of breast cancer. In one study, women with high vitamin D intake were up to 50 percent less likely to develop the disease. In another, Canadian researchers found that women who spent time outdoors or got lots of vitamin D from their diet or a supplement were 25 to 45 percent less likely to develop breast cancer. "Vitamin D is a subject under intense research," Collins says. "And it does appear to play a role." Some of the best vitamin D food sources include milk, cereal, cod, tuna, shrimp and salmon.

Sea vegetables – Both brown and red seaweeds have been shown to inhibit cancer cell growth as they provide iodine and trace minerals. In addition to iodine, “Diindolymethane (DIM) also plays an important role because it increases the metabolism of estrogen through the 2-hydroxy estrone, which is protective to the breast.” Dr. Gary Donovitz, an Ob-Gyn from the Institute for Hormonal Balance in Arlington, Texas. Fox News, 2013.

Coffee – According to a study published in Breast Cancer Research, drinking coffee on a daily basis may lower the risk of an aggressive form of breast cancer. Fox News, 2013.

Fiber such as flaxseeds and oatmeal – Fiber has been reported to help lower the risk of breast cancer according to a study published by The American Journal of Clinical Nutrition. Adding just as little as 10 grams per day to your diet can reduce breast cancer risk by up to 7%. Fox News, 2013.

Peaches and plums – These two fruits contain antioxidants that kill breast cancer cells while leaving normal cells unharmed according to researchers at Texas A&M University. The positive effect is likely caused by chlorogenic and neocholorogenic acid, both found in particularly high levels in both fruits. Findings were published in the Journal of Agriculture and Food Chemistry in 2010. Huffington Post.

Hot Peppers – According to the American Cancer Society, capsicum is the name of a group of annual plants in the nightshade (Solanaceae) family. They are native to Mexico and Central America but are cultivated for food in many warmer regions of the world. Capsicum varieties include the cayenne pepper, jalapeño pepper, other hot peppers, and paprika. Capsaicin is the most-studied active ingredient in the plant and has been approved by the U.S. Food and Drug Administration (FDA) for use on the skin. Some proponents claim that capsaicin has antioxidant properties that help to fight the carcinogen nitrosamine, a cancer-causing agent. An antioxidant is a compound that blocks the action of free radicals, activated oxygen molecules that can damage cells. Capsaicin has been shown to slow the growth of prostate cancer cells in laboratory studies and rodents.

Because it’s my favorite, I could not omit Dark Chocolate – It’s good for you (the darker the better) but not yet linked to reducing one’s risk of cancer because not enough studies have been done on the cancer prevention effects of chocolate. Chocolate is unique among the foods we eat – and we are the only creatures on the planet that can safely eat chocolate. It contains the chemical phenylethylamine, the same chemical your brain pumps when you’re attracted to someone. According to Mike Cross (who has a PhD in chemistry and teaches about chocolate),” it’s the perfect drug.” Chocolate in its pure form also contains tryptophan and ananadamide – both of which make you feel good. The benefits come from flavanols which are potent antioxidants that can prevent cancer, help dilate blood vessels, lower the risk of strokes, and lower blood pressure. My personal favorite, easily available, dark chocolates are Lindt 90% and Moser Roth 90%. The benefit of 90% is that it’s much lower in calories and carbs than the lower percentages.

Apparently chocolate does boost the immune system and contains cancer-fighting enzymes. In laboratory studies, sterate (a long chain fatty acid abundant in chocolate) has been found to inhibit tumor growth and reduce the proliferation of cancer cells. Several more cocoa polyphenolic extracts have been shown to have anti-cancer activity against prostate, colon and adrenal cancer cells. Unfortunately most consumed chocolate is 70% or less. NOTE: An Italian study found that sugar increases the risk of breast cancer.

Everyone knows that broccoli is heralded one of “the top foods” that may help to prevent, stop, or slow the growth of breast, prostate, and other cancers. Many companies make chocolate covered strawberries, so where can I buy what could be the "perfect dessert" - organic broccoli dusted with hot pepper and coated with 90% dark chocolate?

Breast Cancer and Alcohol

The American Cancer Society says it is possible to lower your risk of breast cancer by changing risk factors that can be modified such as lowering your body weight, increasing physical activity and changing your diet. A diet that is rich in vegetables, fruit, poultry, fish, and low-fat dairy products has also been linked with a lower risk of breast cancer in some studies. But it is not clear if specific vegetables, fruits, or other foods can lower risk. For example, most studies have not found that lowering fat intake has much of an effect on breast cancer risk. As of 2013, the best advice about diet and activity to possibly reduce the risk of breast cancer is to:

     Get regular, intentional physical activity. We all know this one and the next one.
     Reduce your lifetime weight gain by limiting your calories and getting regular physical activity.
     Avoid or limit your alcohol intake. This one is a tough choice for many.

However, more and more studies are confirming what for me is personally a disturbing change - enjoying a glass of red wine with my dinner is potentially hazardous to my health. The American Cancer Society says that cutting back on alcohol or perhaps eliminating it from your diet is a wise choice. They go on to state that “even a moderate amount of alcohol is ‘clearly linked’ to an increased risk of breast cancer. Compared with non-drinkers, women who have two to five drinks a day are at least 50% likelier to develop the disease. If you have to drink, stick to a glass of wine (5 ounces), a shot of liquor (1.5 ounces) or a bottle of beer (12 ounces) a day.” OK, so far my glass of wine with dinner still seems permissible, but I’ve already been treated for breast cancer. Perhaps the American Cancer Society advice was for those who have not yet developed breast cancer, which means I need more information before I can make a decision.

Alcohol consumption has long been reported to be a risk for breast cancer, but according to a survey of 1,692 respondents between 30-65 years old, “ US Women (88%) are not interested in learning about how to reduce alcohol consumption however they are interested (78%) in how to reduce the top 3 risk reduction factors: exercise, weight and diet.” Dr. Marisa Weiss, MD says that there are multiple reasons for this lack of interest and the most obvious are:

Alcohol is “embedded in all the good times in life” – referring to parties, college socializing, and end-of-workday rituals. “Alcohol is also self-medication. These are stressful times with a lot of economic uncertainty, and alcohol is a reward at the end of a long day. It’s also a part of many cultures. I’m Italian, and my culture has been drinking and cooking red wine for thousands of years before drinking water was even safe to indulge in as a beverage. But there is a dose-response relation between alcohol and breast cancer risk: the higher the daily intake, the greater the risk.”

More bad news: According to the Journal of American Medical Association (JAMA 2011: 306: 1994-1890), one drink per day increases risk, 3-6 glasses per week over a 30 year period increases a woman’s risk for invasive breast cancer by a small but statistically significant amount.

Is there hope for my one glass of wine? Yes. A 21 year study by Mount Sinai Hospital in Toronto of close to 23,000 women found that moderate drinking before and after breast cancer diagnosis was also tied to better heart health and fewer deaths from non-cancer causes. Researchers found that women who reported drinking 3-6 alcoholic drinks per week before getting cancer were 15% less likely to die of the disease over the 11 year post-diagnosis period when compared to non-drinkers, and women who drank anywhere from 3-10 drinks per week were (on average) half as likely to die of heart disease and 36% less likely to die from all causes combined than non-drinkers. “This is a lifestyle choice” says Dr. Pamela Goodwin, MD from Mount Sinai who wrote a commentary published with the study.

So, what should we all be drinking? Dr. Andrew Weil, MD recommends drinking green tea because “it’s a potent source of catechins – healthy antioxidants that can inhibit cancer cell activity and help boost immunity. It can also lower cholesterol levels, help protect against bacterial infections, promote joint health and stronger bones, reduce inflammation, and enhance the effects of antibiotics.” For me, green tea is not a substitute for a glass of wine with dinner. I’ll drink it during the day or after dinner, but not with dinner.

In my family, dinner beverages have always been a combination of water, wine, and espresso. Interestingly, it was only in the last 25 years that anyone in my family was diagnosed with or treated for breast cancer. I can’t help but to think that this disease, along with the ever increasing incidences of cancer in society, is due to a combination of factors inherent with a “modern” lifestyle – the way foods are raised, packaged and prepared, the building materials in our homes and workplaces, our vehicles, our clothes, and our increasingly poisoned environment are the causes - not a glass of red.

My choice has been to cut out my evening glass of red wine and drink another glass of water with every other dinner. Maybe that way I can enjoy my wine, reap the heart healthy benefits of drinking red wine and still fall into the stats from the Mt. Sinai study without inviting breast cancer back into my life. Breast cancer and its treatment took a considerable chunk out of my life. Why should it take one of the last things I can peacefully enjoy with dinner – one glass of red wine?

A Patient's Thoughts on ACA

Whether you love it or hate it, as of January 1, 2014, the Affordable Health Care Act (ACA) gave many of us with chronic diseases a bag of jewels: It is now illegal to discriminate against, drop coverage of, jack up insurance coverage rates, or deny treatment for those of us with cancer or any other chronic illnesses.

I’m certainly no expert on ACA, but the following are some of what I consider the main points that relate to me as a patient.

Pre-existing conditions – One aspect of the act I laude is that as of January 1, 2014, no one can be denied coverage for a pre-existing condition and insurance companies can no longer cancel coverage if you receive a cancer or other serious diagnosis.

I’ve had two cancers, Lyme disease more than once, and I’m a Type 1 Diabetic. I couldn’t prevent getting these diseases, but they are with me for life and they are pre-existing, chronic (long-lasting conditions that can be controlled but not at this time, cured) illnesses. If you move from insurer to insurer, as many of us are apt to do when we move from one employer to another, thanks to the ACA, insurers can no longer exclude, delay, and discriminate against you when issuing medical insurance coverage.

Thankfully, I have health insurance coverage through my husband’s workplace. Prior to ACA becoming a consideration let alone a law, as someone who’s a “planner”, I thought I’d get a supplemental policy to help offset the lifetime limit - should I hit it. I called every health insurer out there and only one (common & local to all states) would insure me, and then only on a risk pool basis. What they offered me was that after having the policy for 5 years, they would cover my thyroid, breast cancer, and diabetes treatments. Any new illness would be covered under the new policy. The cost: $1,500/month with my absorbing a $15K pre-pay and all the expenses to treat my existing illnesses for 5 years.  At least they offered something - but I was unable to accept it. Several of the big companies wouldn’t even talk to me. A representative of a large, well-known, national health insurer laughed when I said the words “Type 1 diabetes” then hung up on me. Net of that exercise was that I was furious with insurance companies and unable to get a back-up insurance policy.

I was discriminated against. But I’m not the only one to feel the sting of that whip. Many patients are dead, and several I know are disabled (blind, suffering from kidney failure, etc.) because they did not have access to insurance or the ability to pay for the medical and drug bills. I also know patients who were forced into bankruptcy by medical bills related to their illnesses.

Lifetime Caps - Prior to the passage of ACA, many insurance companies set a lifetime cap on how much you and your family could receive via their policies. As of January 1, 2014, policy caps were eliminated. Depending upon the policy, the normal cap ranged between $1M - $2M. Any of you who have had cancer knows just how fast that amount can add up. You may not pay attention to such costs paid by the insurance company while you are in treatment, but they keep track of every penny. As we age, we are all likely to rack up a number of illnesses that require monitoring and treatment, be it cancer or not.

Certainly medical diagnostics and treatments have improved over time, but the associated costs for both old and new have increased. For example, if you have a specific type of breast cancer that requires treatment with one of the new drugs like Perjeta ($160,000/year) or Kadcyla ($9,800/month or $94,000 per treatment) the cost might easily be prohibitive for many patients. The average patient’s “normal” insurance coverage might limit or even eliminate one’s ability to be treated with new drugs – especially the new mono-clonal antibody drugs. That choice lends a new meaning to the phrase “pay or die.”

Medicare Doughnut Hole - According to the Wall Street Journal, “the Medicare D ‘doughnut hole’ is the temporary limit on what Medicare drug plans pay after certain dollar thresholds for drugs have been met. As part of ACA, starting in January 1, 2014, the monthly Part D premiums and a $310 deductible, you pay 100% of drug costs until hitting the deductible. Then, out-of-pocket costs (copays) drop to 25% of the price of your medications. The plan pays the rest until you reach a ceiling of $2,850 in combined payments by you and the plan.” That’s when you fall into the hole. Now, if you hit the doughnut hole you get a 50% manufacturer’s discount + a medical plan discount of 2.5% on covered brand name drugs and a 28% governmental discount on generic drugs. By the year 2020, the doughnut hole will be reduced to a total of 25% co-pay on covered name brand and generic drugs. That’s still a long time away for anyone with a serious or life threatening illness and will force some people to choose between food/rent/medication…but it’s definitely better than nothing.

Medical Premiums, Young vs. Old - Under ACA, young adults may remain on their parent’s policies until age 26. That’s certainly a help for young patients who have little or no financial reserves and must support themselves through a serious illness, considering that the average accrued debt for cancer care is in the range of $26,860 according to several studies.

For anyone 64 or older, insurance companies must now limit policy charges. As of January 1, 2014, they may now only charge 3 times the premium they charge a 21 year-old rather than the previous 5 times as much.

Tough Choices - The cost structure for health care is such that it’s practically impossible for anyone to assess their liability for care in advance. My out-of-pocket medical expenses the year of my breast cancer diagnosis and Lyme disease was over $20K. Unfortunately even under ACA, most of us have two choices: Option A - you pay the cost whatever it is however you can and Option B - you make a personal decision not to have the tests/treatments, not to see the doctor or reduce your visits, or not to take the drugs ordered by the doctor to treat your disease, then endure the results of those decisions.

Other ACA provisions of interest:

The ACA contains another provision that directly impacts those of us struggling with cancer or those who have had cancer. As of January 1, 2014: Insurance companies must now cover routine costs associated with approved clinical trials. However, this provision will only benefit those who are newly covered, not those of us who were insured prior to the enactment of the ACA. When being treated for breast cancer, I was in a trial that thankfully did not cost my insurance company any additional money, but others might not be so lucky. 

The ACA has a new pilot program called “bundling” which will pay the hospitals, doctors, and any other providers at a flat rate for an “episode of care” rather than according to the current method where everything is billed separately. Suppose your hospital will accept the government’s rates but your doctors won’t? How that will work is anyone’s guess.  It would help if the ACA defined tests, treatments, and follow –up care so that we would be able to know what’s covered and what isn’t ahead of time. If your doctor feels that two tests per year are required because of a family history and the government doesn’t, you could be stuck choosing which test to have and which to skip then (for example) hope the one you chose doesn’t miss a recurrence while the disease is still treatable.

The ACA is planning to tie physician payments to the quality of care they provide. Just like any other rating system, patients should have some input but it remains to be seen how that will pan out. I’ve had doctors I trust implicitly and others I’ve fired for their lack of concern, care and treatment. Remember – doctors are under your employment. A happy healthy patient is a good referral agent. If you aren’t comfortable with the care you are receiving, look elsewhere. It would be refreshing to know that as patients, our opinions can translate into tangible results for the benefit of everyone.

Tis the season to be happy, hopeful, and strong

This is a magical time of year when we are given to introspection, inspiration, gift giving, and gathering with family and friends around a warm fire, all in the hope for a new year and a bright future.  Anyone who has ever seen the winter’s solstice knows what it’s like to feel the sun touch your soul. There is hope in that glow and peace in its warmth.  Mysterious winter is a time for huddling down while we pursue our interests in the deeper side of life and reflect on what it’s given us, and what we can give in return.

So, it stands to reason that the holidays can be difficult for anyone who is seriously ill. I spent one winter wondering if I’d ever see another … any serious illness has a way of affecting your body and your mind. Cancer really plays with your emotions and feelings more so than other illnesses. That’s why I know having the support of family, friends, caregivers and beliefs is so important to one’s ability to heal.  And that’s something which the closeness of this season naturally offers.

Opinions differ about whether one’s attitude can cause or cure disease. Some major studies, institutions, and researchers say no, while others, and all religious beliefs, say yes. To me, this means no one knows for sure. But if stress weakens our immune systems, it stands to reason that a positive attitude can make us stronger.  ”Life must be understood backward. But it must be lived forward.”  -Kierkegaard.

  • Take the time to meditate, and practice the 4 healing powers of: positive images, words, feelings and beliefs.
  • Give yourself a gift of massage therapy or yoga lessons.
  • Surround yourself with naturally calming floral essences, your favorite throw, and a good book.
  • Watch your breath, feel the moment.
  • Be tranquil in your mind and awaken to the wisdom of insight.
  • Allow the warmth of your friends and family, the glow of a fire, sunrise or sunset, and the spark of a reflective or inspirational moment to bring joy and healing to your heart, mind, and body.
  • Strengthen your inner self and grasp the quiet joys of the moment.
  • This year’s words have been spoken. Next year’s words await our voice.

If we can use the help of our personal support groups and resources and tap into the warmth of a positive attitude, our bodies might just have the strength to let those NK cells get down and do their jobs of keeping us healthy while we happily enjoy the warmth of a fire and another sunny morning full of glistening snow.

Be happy, hopeful and strong!