Leave your cancer question in the comment section here. I will review questions periodically, and post general answers when possible. I am sorry but I cannot give individual medical advice, and this blog is not intended to be used to guide treatment. If you need to reach me for additional services, please visit the Forensic Services web site.
You just received your second vaccination shot and a little card that has the dates and type of vaccine you received. You are ready to enjoy life again! Then they tell you that you have to wait two to three weeks before you are immune. Why is that?
It might help you to understand if you know how your body makes antibodies. As you can see in the diagram show here, it’s a complicated system.
The reason is that there are many checks and balances that keep the body from over- or under- reacting. The first thing that happens is that an abnormal molecule, protein, or bacteria (the antigen) is circulating in the blood and is discovered by a B cell, a cell of the immune system which is doing surveillance in the bloodstream. Think of the little molecules on the bacteria's surface as the vaccine--it's the same thing.
The B cell has to determine if this molecule is “self” or “not self,” because you don’t want to make antibodies to yourself. (When that happens a serious illness results). All cells of your body have a distinctive marker, called MHC II; the antigen from the vaccine does not have an MHCII, so the immunity system determines it is a foreign protein and will start the process of making antibodies.
To do this, the B-cell holds shows the antigen to a special cell called a “Helper T Cell.” The Helper T cell takes the antigen and holds it on the surface, along with an MCH marker protein. It the shows this antigen to any number of memory B cell, until it finds as few that make antibodies that can bind to this antigen. (How the Memory B cells generate different kinds of antibodies is a long story, and we will not go into details.) It then stimulates these Memory B cells to come out of rest and start growing. Depending on how much antigen is available, on the antigen properties, and on the person’s immune system, the whole process takes about one week.
The selected Memory B cells increase in number to “store” the memory of the antigen. These Memory cells will go through the body and rest in the lymph nodes. A few of these B cells turn into “Plasma Cells,” little factories that grind out antibodies. After another 1 – 3 weeks, there will be enough antibodies to achieve immunity.
Immunity will eventually decline unless the Memory B cells are exposed repeated to the antigen. That is why a booster shot is given, and may need to be repeated yearly.
After a booster shot, the process described above will be much quicker and immunity will be achieved within about 2 weeks.
There is no way to speed up the process. If the booster is given too early, then antigen interference will occur. Doubling the dose may speed up the initial process a little bit, but there is a limited supply and it will be prohibitively expensive as well.
You just have to wait after your vaccine. But just appreciate how those little factories are churning out your protection!
You may know someone with cancer who is being treated with a new type of drug that is called a checkpoint inhibitor. These medications are not toxic chemicals, but are antibodies, proteins similar to the ones your body makes to fight infections. These include ipilumimab, nivolumab, pemprolizumab, atezolizumab, avelumab, durvalumab, and cemiplimab. These medications have only been available within the last 5 years, but some have shown remarkable results. Many cancer scientists regard these checkpoint inhibitors as the biggest breakthroughs in cancer treatment in this century!
Checkpoint inhibitors were developed based on years of research on how a person's immune system fights cancer. You may be surprised to learn that your body is always fighting cancer, even when you are in the best of health. Your immune system's white blood cells continuously travel throughout the body to detect and kill cells that don't belong there, whether they are bacterial, viruses, or cancer cells. This immune surveillance prevents many cancers from getting started in your body, while keeping your body from destroying its normal tissues.
How can a white blood cell tell a normal from a malignant cell? The white cells actually "feel" the surface of the unknown cell to determine if it has normal proteins to which it binds, or if the surface proteins are foreign antigens. If a normal cell is contacted, then the killer cell's PD-L protein binds to the normal cells' PD-L1 protein. This binding, which is called "the immune checkpoint," is like a handshake that tells the T-cell it is normal, and to leave it alone. But if the cell feels abnormal, then the killer T-cells are called in to destroy it by binding to it and then killing it. The picture is an actual photo taken by an electron microscope of the killer T-cell, in red, binding to the cancer cell, in gray.
Cancer cells can make use of the PD-L/ PD-L1 handshake to escape immune surveillance so that T-cells do not kill them--even if they are recognized as abnormal cells. They do this by expressing a large amount of PD-L1 on their surface, as shown in the figure below, on the left. Checkpoint inhibitors interrupt this handshake by blocking the binding of PD-L1 or of PD-1, on the right. Sometimes the results are remarkable as the tumors that are treated are slowly attacked and removed by killer cells.
Unfortunately, these drugs are only effective in cancers that have PD-L1 on their surface, and only a few cancer types. These include bladder cancer, kidney cancer, some forms of lung cancer, and Merkel cell cancer. But doctors are combining these with other forms of treatment including other immune treatment and chemotherapy.
Although these treatments are not toxic chemicals causing nausea and weakness like standard chemotherapy, they are not without side effects. The major problem with checkpoint inhibitors is that sometimes they over stimulate the body's immune system to start attacking itself. The result is similar to an autoimmune disease. This could include any organ system, but most commonly the bowel and the skin, but any organ system can be attacked, including endocrine system, the liver, and the lungs. Occasionally these side effects are severe, but usually they can be treated, and they are almost always reversible.
From an oncologist's perspective, it's wonderful to have new, effective treatments to offer hope to cancer patients!
I recently attended the 20th annual Lynn Sage Breast Cancer conference in Chicago. Twenty years! There has been remarkable progress in the treatment of this disease.
What struck me the most is how breast cancer treatment has moved on from a paternalistic, "doctor knows best," attitude to doctors asking, "how can we do the least amount of treatment with the maximum chance of cure and the fewest side effects?"
We haven't seen this attitude shift in other cancers, and a lot of it is due to activism of the breast cancer/survivor community, advocating for change, and helping that change to happen by raising money for research and participating in clinical research trials.
This activism has paid off. Not too long ago, treating breast cancer meant throwing the book at you -- surgery, chemotherapy and radiation, followed by years of pills and debilitating residual effects. We now understand that different subtypes of breast cancer needed different drugs and hormones, so treatment will be the minimum amount, tailored to target the subtypes. Research in surgery, radiation, and supportive care has continued to improve these procedures and decrease side effects. Improvement in imaging has provided better, more accurate screening for early detection, and options for women with difficult-to-image and "dense" breasts. And genetics research has helped us to find more breast cancer subtypes and how to improve survival in these groups.
It's hard to cover a 4-day meeting in a short article like this, but I hope that I captured some of the exciting at this Here are a few highlights presented at the conference.
Reducing side effects from treatment has been an important area of research--it's made life bearable for breast cancer survivors who are anxious to get back to their normal lives. For example:
-Hair loss results from many chemotherapy drugs, and while these drugs may be necessary, the result can be devastating for a woman who is still trying to cope with the loss of her self-image after removal of part of her breast. New methods of scalp-cooling are being tested to reduce hair loss, with surprisingly good results for some women.
-Lymphedema is a persistent swelling of the arm resulting from surgery in axilla (armpit), and for some it can incapacitating and unsightly. Surgeons are exploring methods to prevent or treat lymphedema using microsurgery on the lymph vessels of the arm.
Perhaps the single biggest improvement in breast cancer survival has been the widespread adoption of regular mammograms, because breast cancer caught early has a 99% chance of survival. But mammograms can miss up to 10% of cancers. And some women have breasts that just don't image well.
For some, MRI may be a better choice than mammogram. MRI imaging uses magnetic resonance instead of radiation, and can give a more detailed or complementary image of the breast. A lot of research has now shown that MRI is helpful to elucidate a questionable mammogram result, or to image a very dense or fibrous breast--particularly a problem in some high risk women. But the procedure is expense and insurance doesn't cover its routine use. However, I am optimistic that the breast cancer advocacy groups will lobby strongly to get insurers to start covering the procedure.
For many years, there were no new breakthroughs in treatments--until recently. Two relatively new treatments have been found promising for advanced cancer, and for some hard-to-treat subtypes, particularly "triple-negative" breast cancer. Treatment which uses the body's own immune system--immunotherapy--given dramatic results in some cases, and methods are now being developed to determine which patients will benefit from it. For some, it may even help to bypass chemotherapy completely! Another class of drugs called "PARP inhibitors" are now being used to treat triple-negative breast cancers, and those that arise in women carrying the BRCA breast cancer gene. As these treatments become fully integrated into medical practice I suspect we will see even better survival results in breast cancer.
A reader recently asked,
"I just read your article on carcinogens and I think I already know the answer to this question, but it’s scary territory so I am asking. My husband has been taking Valsartran for over a year and his prescription was among those just recalled by the FDA for probable carcinogens. I’ve had a few suggest that he should see an oncologist to be tested. Is this good advice? I know being sure never hurts, but being paranoid can."
Valsartran (brand name Diovan) is a heart and blood pressure drug that was recently recalled by the US Food and Drug Administration (FDA) because it was found to contain NMDA, a carcinogen. What should you do if you are taking Valsartran?
DON'T PANIC! The Valsartran does not cause cancer, it's a very good drug and if you are taking it, you probably need it. The impurity that night be in the pills doesn't cause cancer but it might increase the chances of cancer over time. You will waste your time if you see an oncologist;
Valsartran was recalled by the FDA because some preparations of this drug were found to contain an impurity, NDMA , which is considered a "probable carcinogen" since it increased cancer in laboratory rats. The NMDA was the result of some new manufacturing methods used by only a few companies that made the pills. NMDA was found in the pills from three companies, and these were the ones that were recalled: Major Pharmaceuticals, Solo Healthcare, and Teva Pharmaceuticals. The rest were tested and found to be safe.
If you are taking Diovan, DON'T STOP TAKING IT! It could be dangerous for your heart or blood pressure if you stop, and it won't hurt you to take it for a few more days to sort this out. Instead, talk to the pharmacy that supplied the drug and find out if it was from a recalled batch; the pharmacy should be able to find a safe batch. If you need to stop the drug because you can't get a safe preparation, get in touch with your doctor--call the office, talk to the nurse if you can't reach the doctor. The doc can put you on another medication that has the desired medical effects for your system.
Don't see an oncologist. There is nothing this specialist can do there is no general test to find cancer. This might be a good excuse, however, for you and your spouse to think about getting up to date on the recommended cancer screening tests, such as prostate exam, colonoscopy, pap smear and mammogram.
Your doctor has been nagging you to get that screening colonoscopy, and you've been putting it off for years. The last thing you want to do have someone look up your rear with a long tube!
Finally you have an alternative--a non-invasive colon cancer-screening test! No day spent in the bathroom with laxatives, no hospital procedures, and no expensive insurance co-payments. You've heard about it on TV or social media: Cologuard™. What is it? Should you do it? Can it replace colonoscopy?
Why should you get screened for colon cancer?
Colon cancer--or more accurately, colorectal cancer, which includes both the colon and rectum--is one of the most common cancers, but it is relatively infrequent, as only about 4.5% of people will develop it over their lifetime. It is the cause of 50,000 deaths in the US per year. Unlike many other cancers, colon cancer has a good chance of cure if it is detected early, when it is completely silent and there are no symptoms. The purpose of a screening test is to detect these early stage cancers. If everyone in the country were screened for colon cancer, about half of these deaths could have been prevented--maybe yours, too.
Colorectal cancer screening is recommended to start at age 50 for those who have an average risk of colon cancer. Your doctor can determine if your risk is average and a screening test is appropriate. All colon cancer-screening tests need to be ordered by a physician, who will have the ability to interpret the results and provide follow-up.
Who should not get a colon cancer-screening test?
People whose cancer risk is above average may need to be evaluated more thoroughly than with a simple screening test, and may need to start at a younger age. These include those who have had a previous history of bowel cancer, colon polyps, or inflammatory bowel disease, or who have a strong family history of colon cancer--they will need more detailed evaluation than a simple screening test, and may have to start at a younger age. Cancer screening tests should also not be done if there are any persistent symptoms--such as bleeding from the bowels, pain, or weight loss. The symptoms might be due to something other than cancer, but they will need evaluation to determine the cause and the treatment. A screening test doesn't give the cause of symptoms; it can only say whether or not a cancer is present. A negative test may give a false sense of security.
How often should you get colon cancer screening?
The current recommendations are that anyone with an average risk of colon cancer should get screened with colonoscopy at age 50, and then every 10 years if the screen is negative. Medicare and most insurance policies will pay for a screening colonoscopy every 10 years, which is the estimated time it takes for a new cancer to grow from a completely normal bowel. If a growth such as a polyp is found during the procedure, then the colonoscopy will have to be repeated sooner than ten years, possibly 1 to 3 years, depending on what is found. Of course, if a cancer is found, then evaluation and treatment will begin.
What does colonoscopy involve and why are people so reluctant to do it?
Many people object to the idea of having a long, flexible tube passed into their rectum, with doctors crowded around to have a look. In reality this is never experienced, because the patient is under anesthesia during the procedure; he will just go to sleep and wake up without any memories of what went on.
The true objection to colonoscopy is that the bowel has to be completely cleaned out before the procedure. This means eating nothing but clear liquids for a full day before the procedure, taking several rounds of laxatives and purgatives, and spending much of the day in the bathroom.
What is the Cologuard™ test?
Cologuard is a proprietary method in which a sample of a person's stool is analyzed to extract DNA, and the DNA is tested for mutations in the genes involved in cancer. To perform this test, the subject has to collect a small sample of a bowel movement, place it in a special collection container, and send it to the Cologuard lab. The lab will perform the tests and send the report to the doctor who ordered the test. You might want to visit the test's web site, cologuardtest.com.
Can Cologuard be done instead of a colonoscopy?
Cologuard is 92% sensitive--that means it will miss only 8% of cancers. So a negative test is likely to be correct most of the time. Cologuard is 87% specific, which means that about 13% of the time there will be a positive test when there is no cancer present. If you have a positive test, then you will have to have a full colonoscopy, but there is a still some chance that you don't have cancer.
Most experts feel that Cologuard is a good alternative for a screening test in people of average risk, and it beats not doing anything at all. Still, there isn't much long-term experience with it yet. Some experts feel that the Cologuard test should be performed every three years instead of ten. That's probably because unlike colonoscopy, Cologuard doesn't detect polyps, which take about three years to develop into cancer. The American Cancer Society recommends colonoscopy every 10 years as preferred, but a DNA-based stool test as an alternative every 3 years. The US Preventive Services Task force says screening should start at age 50, and recommends that patients decide with their doctors which test is best for them; the frequency will depend on the test.
What are you waiting for?
NOTE: To leave a comment or question, go to "Home," "Your Cancer Questions" and click on "Comments." Thank you!
A friend asked:
"My bones have gotten softer after cancer treatment--they say I have osteoporosis, and recommended that I take an IV medication (zoledronic acid) to treat this. What is osteoporosis, why did I get it after cancer treatment, and is this new drug safe? I have had both knees and a hip replaced, and don't want any more problems."
Answer:
Osteoporosis (from the Greek, "porous bones") is a condition in which the bones have become brittle due to ongoing loss of calcium.
Bones lose calcium as we age. That is because the sex hormones, testosterone and estrogen, keep calcium in the bones, and these hormones decrease with age, especially after menopause. Some individuals inherit a tendency to lose more calcium and develop osteoporosis, whereas others experience very little loss. Did your mother have osteoporosis? If so, your chances of getting it are high. Fewer men have osteoporosis because their bones have more calcium than women's. Bone calcium loss is common in cancer patients. Cancer treatment for breast or prostate cancer that suppresses hormones can speed up osteoporosis. So, too, can corticosteroids, such as prednisone, which are often used in treatment.
You probably know that calcium is what makes bones strong; it's like the concrete that holds the building frame together. But you may not realize that your hip and knee problems are not due to osteoporosis, they are due to arthritis, another Greek term that means "joint inflammation. " In older adults the most common form is called osteoarthritis (Greek for "bone-joint inflammation"). The cause of osteoarthritis is wear and tear on the joint cartilage, so the joints don't function well. This results in thickening and overgrowth of adjacent bone--now that's painful, and can require a joint replacement. Both osteoporosis and osteoarthritis increase with age, but treating osteoporosis won't prevent these kinds of joint problems.
Osteoporosis, on the other hand, is painless, and it is only felt if it leads to the breakage of a brittle bone breaks, or to spine compression. In advanced osteoporosis, fractures happen easily with only a minor fall, or by carrying something only slightly heavy. Spinal compression can also lead to a bent spine, making it difficult and painful to walk. But the most dreaded complication of osteoporosis is a hip fracture--a break in the bone where it attaches the leg to the hip, in the neck of the ball-and-socket joint (see the picture at the left.) A hip fracture can kill you or lead you to prolonged hospitalizations and eventually a nursing home. Of those who survive, almost half will lose their pre-fracture walking and activity levels.
It's hard to break a hip from a simple fall, unless your bones are very brittle, and that's why it's important to stop osteoporosis before it gets too advanced. Since early osteoporosis is silent, women (and cancer survivors) are recommended to get bone density screening tests periodically. If calcium loss is detected and is progressing, treatment will be recommended.
Merely taking more calcium and increasing your vitamin D does not put calcium back into your bones, but you will lose more calcium if your levels of either are low. Treatment for osteoporosis starts with a type of drug called "bisphophonate." This medication strengthens the bones so they don’t continue to lose calcium, and often will increase the amount of calcium in the bones. Usually the doctor starts with the medication in pill form, but if it's not doing the job, then the IV drug will be used. (The IV drug is also used to slow down bone metastases due to cancer). There are other types of drugs for osteoporosis that are used in special cases, but for routine osteoporosis the IV drug is given once or twice per year.
Is the drug safe? Problems with this medication are infrequent, but of course you don’t want to take anything you don’t need because you don’t want to be in that <1% of patients with a serious side effect. If you have tooth or jaw problems, or kidney failure, there are risks, and it's best avoided. Once in a while your calcium can get dangerously low on this medication, so that's why we check. The other risks are usually avoided or caught early if the blood tests are checked, and if you take the recommended calcium and vitamin D. I’ve treated hundred of patients with this drug--mostly cancer patients, but a few normal ones. I have only seen a serious problem once--a jaw inflammation--and it eventually resolved.
So by all means, if your doctor recommends treatment for osteoporosis, then I advise you to go ahead with it. You'll be safer and stronger in the long run.
If you have comments or questions, please post them on the HOME page. Thank you!
The caregiver is one of the most important members of a cancer patient's care team. As a caregiver, you will be arranging transportation, spending hours in waiting rooms, being available for emergencies, and many other tasts. Whether you are a spouse, relative, or a close friend, this is a tremendous responsibility. Here are ten tips to help you survive as a caregiver.
1. Remember: the patient is the one who is sick--not you.
Don't dwell on your own medical problems, or the inconveniences you are going through to get her to clinic. Your charge may not have the energy to provide support for you, too--and she is worried about her own health, and is feeling guilty for imposing on you. Be there for her. Be a listener. You may be the only friend she has who is willing to keep her company when she is at her worst, in pain or depressed. If you become discouraged about her condition, keep it to yourself. Remain positive and cheerful, even if you have to force yourself.
And don't forget: take care of yourself, too. Being a caregiver is a difficult and stressful job. Ask for help if you need it!
2. Clarify your role
Let the medical staff know that you are the caregiver and make sure they know how to reach you. Clarify whether you have any other legal standing, such as next-of-kin, medical "power of attorney," etc. Each of these roles has specific legal rights, such as ability to give consent for procedures, hospital visitation privileges, and phone or paper access to HIPPAA-protected information (including clinic appointments). Don't take anything for granted or you may find yourself in a bind. If you are not the next of kin, find out who has the authority and how to reach them.
3. Write it down
Take notes or bring a recorder to every doctor's visit. Note if and when your charge has side effects from treatment, or symptoms such as pain or fever. Write down questions for the doctor--and encourage your charge to do this before every clinic visit. Don't rely on your patient's or your own memory for the short time the doctor is in the room with you.
Keep your own detailed medical records, including lists of prescription drugs and over-the-counter meds, dates of clinic visits and the name of the doctor; dates of chemo, injections, and radiation; dates of tests and location; test results including X-ray results. Don't expect the doctor or emergency room to have easy access to the record, because HIPAA rules and incompatible computer systems have made it much more difficult. You will want to get a folder or binder, because the papers really mount up.
4. Get online
Your patient should enroll in electronic medical records at every institution where he gets care, but even if he is not, you, as caregiver, will need access. You can check appointment dates and times, request prescription refills, find test results, and send messages to the doctor and her staff. Your patient may have to give permission for you to access her records and get your own password--ask the front office how to do this.
5. Arrange transportation
The patient and staff rely on you to get him there! Chemo treatments or procedures may be cancelled if there is no accompanying adult. If you can't be available to drive, find someone else.
6. Look for ways to reduce the time spent at the doctor's office
Many cancer patients feel that they no longer have a life because so much time is spent at the doctor's office. And if you are the caregiver you probably feel the same way. Many clinic visits are scheduled because the computer had a slot to fill, or for the convenience of the staff--not the patient. You can request alternative dates and times to suit your own convenience, unless it is a chemo or radiation appointment.
Try to bundle appointments so they take place on the same day--lab, imaging and blood work, for example; see if the blood work and X-rays can be done closer to home; speak to the doctor about changing the chemotherapy schedule if it is too demanding --some chemo can be given ever 2 or 3 weeks instead of weekly, and some can be given in pill form, for example. And doctors will make every effort to accommodate a break for a special event, such as a wedding or new grandchild. But whatever you change, be religious about keeping the chemotherapy and radiation appointments--that's why you're there in the first place.
7. Offer to help keep an eye on the paperwork
Keeping track of the bills, appointments, prescriptions and other paperwork resulting from cancer care can be a full time job! It can be overwhelming for a person who is dealing with fatigue, side effects, and pain. Unless someone takes charge, bills pile up, the mortgage and taxes are unpaid, and disaster can follow.
Your patient may not want you managing her finances, but there are things you can do to help. At the very least, offer to keep an eye on the medical bill: check for errors in dates and treatments; confirm that insurance and Medicare were billed properly and that the claim was paid. Offer to make calls if there were errors, or negotiate costs if they are unreasonable. Make sure drug prices are not excessive--and you may have to shop them around or ask the doc to consider an alternative. Remind your patient that Medicare open enrollment starts in November, which gives him the option to change to ore affordable insurance and prescription plans.
8. Take advantage of social services.
At the start of treatment make an appointment with the social worker; see if your patient qualifies for: a handicapped driving hang tag; social security disability; paid sick leave, and subsidies for medications. You, as caregiver, may want to consider taking family leave from your job if things get difficult.
Take advantage of services such as handicapped seating at concerts and theaters, wheelchairs, motorized shopping carts, etc. Find out about local services such as meals on wheels, home health care, etc.; join a cancer support group; call the local American Cancer Society and see what they have on offer.
Have a plan if cancer progresses and you need additional help as caregiver. Ask the social worker about home health and nursing care and specialized medical transport--know the options under your patient's insurance. And don't forget to find out about hospice services, so you will be prepared in advance if they are needed.
9. Plan in advance for emergencies.
Know whom to call during the day and after hours; ask what preferred ED to use. Know what symptoms require prompt attention, such as chills, fever, loss of breath, mental confusion, or sudden pain. If you call with problems, or make a trip to the ED, make sure to have available a list of medications, diagnosis, treatments, dates of treatments, and names of the doctors. Don't wait to call an ambulance or drive to the ED if things become too urgent to wait for a callback.
Make sure you discuss with your patient how she wants to deal with an emergency hospital admission--everything from moving a parked car, getting the house keys and mail, and feeding the cat. Know which relatives you will need to call, and who can consent for the patient if she becomes unconscious. Have copies of the insurance card, ID, and a signed copy of the living will (if needed).
Make sure the patient has addressed "end-of ‘life" issues well in advance.
Remind the patient to get necessary affairs in order, including passwords and access codes that you will need if she loses consciousness at any time during her treatment.
10. Keep living and having fun
The purpose of cancer treatment is to help the patient live as normal a life as possible for as long as possible. The purpose is not to be her life. Take a break to enjoy simple things, like a good movie, a restaurant meal, a glass of wine (she may have to cheat on her diet), a visit from a grandchild, a family reunion. Celebrate small victories -- this will make it easier to deal with the large defeats.
Did you know that you have the legal right to see your medical records? ALL of your records: test results, X-rays, hospital notes, and even doctors' notes. Do you know what's in your records? Do you know how to access them? Do you even want to see them?
What's in your records?
1) Test data (labs, X-rays, scans, etc.) 2) notes written by a medical professional--MD, PA, etc.--during an encounter 3) doctors' orders (meds, tests, etc.) 4) Documentation of encounters including date, time and bills.
Previously, records consisted of a few hand-written doctor's notes and test results for a single patient, usually
contained in a folder in the doc's office. Today, records are massive and inclusive, due to Medicare, lawsuits and the growing health care and insurance industry's demand for more paperwork. The adoption of electronic records, mandated by federal law in 2014, made it easy to expand even further. Even simple hospitalizations can produces hundreds of pages of notes!
The hope was that electronic records would link all doctors, hospitals and labs so it would be easy to obtain to get life-saving information and coordinate care, and avoid repeating costly tests. So far this has not happened. Records are as fragmented as your health care, with each facility having its own records. Furthermore, most are running computer programs that are incompatible with other facilities. So it's still up to the patient, to request that one office print out and fax the records to another office, or provide a printed copy to hand-carry.
Getting your medical records and finding what you want in them
The HIPAA law of 2012 gave everyone the right to see his or her own records. It required a written request, expensive Xeroxing costs, and long waits to have the X-rays sent. It's faster now with electronic records, but it's still not easy. For more information on HIPAA, and the issues involved in electronic access, as well as concerns of the medical community, check out this interesting post: https://www.cloudwards.net/hipaa-compliant/.
First of all, they are not all in one place. You will need to know the dates of service and which facility to ask (where did you go to get that blood draw? Who did your mammogram 2 years ago?). Each facility has its own rules for releasing records to the patient, and fortunately most larger clinics have offices to assist you. At the very least, you will have to sign a release form and show an ID. If you want your records to be sent to another doctor you will have to sign a release, but they must send or fax them promptly. If, on the other hand you want to get your own copy and carry them yourself to that doctor, it will take longer; you will have to request a paper copy, and a disk with X-ray images.
In early 2014, a new federal law gave patients the right to access their test results directly from the laboratory instead of their physician, as was the custom and law in most places. Many labs are still not comfortable with this request, but you will have to remind them it is your right. You will still have to show ID and sign for them.
If you request ALL of your records from an institution you will receive a huge stack of papers, containing everything from billing records to hourly documentation of your vital signs from a hospitalization. Unless you are considering a lawsuit, you probably don't want all of this; most likely you are only interested in seeing your lab tests, X-rays, and doctors' notes. Finding the information you want is like looking for a needle in a haystack and there is no easy way to do it, unless you have electronic access like your doctor does. You can use the health portal, if your institution has one, to see much--but not all--of the information that you desire.
Your "health portal"
Many health care systems and large institutions now have "health portals," giving patients online access to some of their medical records. You will need to register, and set up a password-protected account to use it, and you may need a code from your clinic. There may be a smartphone app, too.
Only a portion of your records will be available in a portal. These include the summary of your clinic visits, some of your test and imaging results (not the pictures), a list of your medications, dates of upcoming appointments and scheduled tests. There is usually a link to send an electronic message to your doctor and receive an answer--similar to a text or email. You might be able to access test results, order and other doctor's visits--so long as they occur within the linked health care system.
What health portals do well is facilitate the "business" of medicine. It is easy to view what you owe and pay your bills. The portal keeps you within the system for scheduling tests and referrals, and sending reminders to make sure these appointments are kept. Yes, they help you spend your health care dollars with their system instead of a competitor.
The bad news: the lab and X-ray reports are visible only after the doctor who ordered them has reviewed them, and only if they were done at a facility linked to the portal. After an office visit, the "clinical summary," which you are given on paper and in your portal looks impressive, but don't be fooled. It contains very little data and does not include the doctor's note. In fact, few portals give you access to the note that the doctor has authored, which contains your history, physical, and the doc's analysis of your case. If you want to see this you will have to make a specific request, usually on paper.
Other concerns with these portals: your medication list can be out of date or even incorrect. It may be incomplete, including only medicines prescribed at this facility and not by all your doctors. The list of diagnoses may be inaccurate or wrong, or out of date. And your e-messages may not be answered, or may be answered by someone other than a doctor. Having these electronic portals makes clinics lazy -- often they don't bother to call anymore to discuss your results or reassure you.
Patients without electronic access
Many patients are don't utilize electronic records because they are not connected: they don't use computers, don't have secure internet access, don't know how to use their portal, never set it up--of just don't remember their password. This group includes those in most need of medical services--the elderly and indigent.
And there are still people don't want to see their records. Perhaps they don't want to hear the bad news from a computer, or just don't feel they can understand the details. They are happy to let their doctor take the responsibility; they still have to be accommodated.
If you are a caregiver of a patient who is under active care but does not have electronic record access, you might be able to obtain "proxy" access, with the patients' permission. Many people do this for their elderly relatives and friends, because it helps them keep track of clinic appointments, medications, tests, and prescriptions. Ask the clinic about it.
Who else can see your record?
Legally, your records can be seen by people who "need to know," such as those who pay your bills, and other physicians and nurses involved in your care. There are strict laws regulating who this is and what they can access. Still, many people are worried about loss of privacy, or sensitive details about them getting out. A diagnosis of venereal disease, or a terminated pregnancy, or a cancer diagnosis can be your friend the nurse will lose her job and go to prison if she is not providing care but looks at your chart, or shares details about your medical condition.
Correcting mistakes in your records
You have the legal right to correct errors in your medical records. Because the record is a legal document it cannot be modified, but it can be amended. The amendment will be indicated as such, as well as the date it was added. You may have to put your request in writing, and they have 60 days to respond to it; if they deny the amendment they will have to notify you; you may still add a formal, written disagreement to the file.
The down side of seeing your records.
Doctors have always had mixed feelings about showing medical records to patients, and most health facilities had strict rules against it until 2012. Docs felt that it is one thing to read a test result, biopsy report, or radiology report, but another thing to interpret it and understand its significance within the context of the patient's diagnosis. That requires a fair bit of knowledge, and an understanding of the medical condition of the patient for whom the tests were ordered.
Without your doctor's input, viewing your records can cause unnecessary worry and anxiety. A lab test result that is flagged as "out of range" may be normal for you, or even improved. Or the result may be insignificant or meaningless. (See my recent blog about interpreting your lab results, Are My Buns Too High?). Another hurdle is the terminology. Medical term are derived from the Greek and can be complicated if you haven't learned the system; many words have similar roots and can be easily confused. For example do you know the difference between a "colostomy" (an external bag for feces) and a "colonoscopy" (a screening test for colon cancer)? What did your doctor recommend? You can panic if you read this one wrong! Also, physicians use abbreviations that have to be understood in context. SOB means "shortness of breath," whether or not you are a difficult patient or not!
The physician's tradition of keeping notes secret seems overly paternalistic in this day and age, but we've been taught to do it for the patient's protection, as well as for the doctor's freedom to think clearly and without censorship. Physicians write their opinions and a list of possible diagnoses, many of which are unlikely but still must be considered in the design of a diagnostic approach. It is reasonable to write, "cannot rule out cancer" for an unusual symptom even though the doc can see cancer is highly unlikely. Doctors' notes may also contain an abbreviated description that helps them to remember the patient, but may be considered derogatory or racist: "this is a 56-year old black male who looks older than his stated age," or "this obese, white woman..."
The doctor's opinion will be an honest reflection of his thoughts and assessment, which might anger or upset the patient if seen. A doctor will frankly write that a pain or disability claim is out of proportion to the injury and suspects malingering, or that the patient is seeking prescription pain medications, or there is a suspicion of alcoholism or depression, concern about child or spousal abuse (which must be reported), or worry of sexually-transmitted disease due to promiscuous behavior.
Many physicians are concerned that they will no longer be able to write their honest opinions in their notes for fear of being challenged, sued, or reprimanded by their administration. They will have to deal with insistent patients who want apologies or want changes. And answering frantic phone calls and emails from patients about misinterpretations and misunderstandings can be time-wasters for a physician who is already overworked! Doctors as well as patients have to learn how to be comfortable with these new laws of chart access.
What does the future hold?
Data mining of health records shows great promise in identifying inefficiencies and improving practices so as to provide better care at reduced cost. In addition to the business side of medicine, data mining can also help to improve community health, looking for disease trends or nutrition, for example. Medical research use is just beginning, but is likely to show tremendous payoff in the diagnosis and treatment of disease, and better understanding long-term effects of medication, or uncovering side effects. Protecting patient privacy in these investigations is paramount, and all research of this sort must be don on "de-identified" patient data.
The other challenge is to link electronic records across multiple health systems. Many software firms are already designing programs to do this, but it will be a difficult task, and there is little incentive for large health care systems to do anything that might direct business to a competitor. It would probably require a federal mandate and incentive funding, which is not likely in today's political climate.
Another solution is to store all of the data in the "cloud," rather than in individual health care systems' computers. This will allow it to be accessed readily by multiple providers as well as the patient, avoiding unnecessary duplication and facilitating coordination of care across multiple specialties. Yet worries about hacking and cyber attacks make us all wary of taking this step.
The ability to access your own medical records gives you the power to get more involved in your own health care. It's definitely worth your while to get to know what's in your medical records, and your rights regarding them.