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?
Published: Friday, 09 May 2014 14:07
Written by A. Corti
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.
Published: Tuesday, 14 January 2014 00:48
Written by Adrienne C
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.
Published: Monday, 09 December 2013 16:01
Written by Adrienne C
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!