A survey of 500 cancer survivors found that more than half of them delayed seeking treatment for two months or more despite having symptoms of their disease.
The report, from the Tower Cancer Research Foundation in Los Angeles, found that the biggest reason people waited to see a doctor was because they were simply waiting to see if symptoms disappeared. However, 15 percent of respondents waited one to five years after their symptoms appeared before finally seeking medical advice.
About a third of patients said it was just procrastination that delayed their diagnosis. But 13 percent said they were afraid of what the doctor might find, while 12 percent were stymied by insurance woes.
Because the data come from cancer survivors, it’s not clear how much it reflects the real world, where many people may die as a result of delays in seeking a diagnosis.
“Hope, fear, procrastination and lack of medical insurance were all powerful forces preventing people from going to see a doctor,” said Dr. Solomon Hamburg, president of the foundation. “Those surveyed were cancer survivors, but many people who delay going to a doctor for long periods of time for a diagnosis are not as fortunate. Early detection raises the bar considerably on our ability to help those in need.”
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Many cancer symptoms start out vague and nonspecific. Many doctors act condescending and scornful toward patients who seek care for vague, nonspecific symptoms. Undoubtedly one reason for the delay is patients’ desire to avoid being given a patronizing brush-off from their doctor.
— TMLEVERY PERSON should be covered for care for major health problems like cancer, diabetes etc. The biggest delay is NO INSURANCE NO TREATMENT. Everyone knows that. With insurane you live..without it you die. Congress and the Senate and President need to make sure EVERYONE has health care.
— sam johnsonMy mother-in-law was diagnosed with PMP cancer about 2 years ago. (For those who do not know, PMP is a very rare cancer that does not spread through the blood, but rather fills the abdominal cavity with jelly-like tumors that eventually compress vital organs). She had a swollen abdomen for as long as I have known her (a decade) but a (grapefruit sized) hernia caused by the tumors pressing outward finally alerted doctors to it. At first they thought it was just a hernia and only during surgery did they discover the tumors.
Unfortunately, she delayed the hernia repair for months and though much of the jell was removed during the surgery “on the spot” she was supposed to have a more thorough surgery to remove the rest of the tumors left behind.
The fear and panic that set in was hard to watch and we (her entire family) agonized as she procrastinated for over a year to get the badly needed surgery. In that year, her abdomen swelled back to its pre-surgery size and when she finally went in for the surgery, they could not get it all. The operation lasted 16 hours (about 6 hours longer than expected) and they could not get the tumors that developed on the liver and intestines.
The recovery was slowed by the difficult surgery and she was intubated in the ICU for 2 weeks, eventually needing a tracheotomy. The chemo couldn’t be administered on the desired schedule either, due to her weakened state.
Over a year later, the good news is that she seems to be recovering and the growth seems to have been staved off by chemo (to which she is responding quite well). But I keep thinking back to what my husband told me when he visited her in the hospital after the second surgery. He spoke with the surgeon during his visit and asked for a frank prognosis. The doctor said “had I been able to operate a year ago I am confident I would have gotten it all.” He has given her 5 years, but we are hopeful (it is a rare disease with little data).
Fear and procrastination dominated the delay of treatment in this case with real consequences.
FROM TPP — Thanks for sharing a really compelling story.
— anonOne August my sister noticed a lump on Mom’s breast and, not thinking beyond this question, asked, “Do you have a tissue tucked in your bra?”
“No,” Mom said.
Four months later Mom finally went in to get this lump that had been visible checked, and of course it was cancer. In spite of chemo and a mastectomy she was dead at 61 within 2 years.
I never asked her why she held off on getting checked; I can only make suppositions based on how she handled the rest of her life. I think it was probably a combination of fear and shame — shame at being sick and that maybe she had contributed to it through her lifelong smoking.
— JohnI read the actual Tower report and found the written comments by the people whose diagnosis was more than two months after seeing a doctor very revealing. From reading them (see below) one gets a sense that the reasons for delays in general were far more complicated than the headline, “Fear and Procrastination Delay Cancer Diagnoses,” would suggest. For myself I felt the lump above my breast and immediately took myself to my 25+ year trusted gynecologist. He examined it and said not to worry. “I don’t know what it is, but it isn’t breast tissue,” he said. Earlier my PCP had felt something and thought it was due to a recent sternal fracture. Due to dense breasts it was never picked up by my annual mammograms. Finally almost 2 years after that visit to the gyno it was picked up after a mammogram in a follow-up sonogram. It was diagnosed as a 2 cm. invasive ductal carcinoma. Needless-to-say I’ve never been back to that gyno! Aftersight is always 20-20 and the progression to cancer often seems clearer in retrospect than it does in the earliest,somewhat vague symptoms stage - even to the docs and they’re supposed to be the experts!
From the Tower Report ( copied and pasted just the first couple pages, there are many more comments along the same lines):
— D.Can you please tell us the reasons for the diagnosis taking more than 2 months? (Open text) (Note: This question was asked of respondents whose diagnosis took 2 months or longer after having seen a doctor.)
1974—The doctor ran numerous tests over several weeks to determine it was malignant and then to determine the extent of involvement. Thyroid Cancer develops somewhat slowly, compared to other types. 2008—-I have had 2 CT Scans, a PET Scan and a biopsy on a new growth in my neck.
1st doctor told me I had the flu then a virus this went on for several months and I tried to tell him then he tought i was turning into a hypocondreack.
after giving birth, i was having my tubes tied and it was discovered
All the testing came back inconclusive until a bone marrow biopsy was done. That was a last resort test.
Because I held off going to have the biopsy done.
Because I knew something was wrong when I was a child, but I could’nt convince my doctors or anybody until it got so bad that it almost killed me. I’m talking it wasn’t found unti lthey told me I had less than 24hrs. to live. I had to have immediate surgery.
because I saw more than one dr. for 2nd and 3rd opinions
because i was so scared too go and do anything about it because i didnt have any insurance
Because it was an exotic blood cancer, a doctor from elsewhere was brought in.
because my — doctor’s office sent me a letter saying my pap test was fine and I didn’t go back for another year
can’t remember
Could not get mammograms from previous lab to compare with new ones
couldnt get an appointment before then
did not, was diagnosed the same day
DIDNT WANT TO KNOW.
different types of tests
doctor didn’t think it was cancer
Doctors kept telling me cancer doesn’t hurt, I was too young, my thyroid tests were always normal
doctor’s off ice forgot to schedule test
Is it bad that I have no idea what a symptom of cancer is? Does this just mean people didn’t get symptoms checked out that later turned out to be cancer, or that there are specific “this might be cancer” things that people don’t get checked?
— TJFROM TPP — There is no one symptom of cancer, but if something new or different is happening, you should talk to your doctor.
I cannot stress how important it is for people to undergo routine screening and prevention. Some of the most important visits to the doctor are not when you are sick, but when you are well. Got a mole that’s suspiciously changing? Seeing blood in the toilet when you go to the bathroom? Please go tell your doctor. A good doctor won’t be patronizing or rude about patients who come in with things that seem amiss.
There’s an otherwise healthy man in his 40s on our inpatient service who didn’t get a mole checked out for over a year, because it didn’t bother him or cause him pain. He has metastases in his brain now after surgery to resect his melanoma was ultimately unsuccessful. Truly a heartbreaking story.
— JasonAnother report based on a survey that has no scientific gold standard basis, is filled with all the cliches (except save lives), promotes all the current myths and has not a word about primary prevention.
The between-the-lines message is that people must overcome their fears and false hopes that doing nothing might be better than doing something and to get to providers fast. The tale of, “If I only saw this patient a year ago…..” is the rationale given for denying that even when they do see the person at exactly the right time, things do not always work out for the best. It is a good way to blame the person for their cancer and failure to respond successfully.
The literature has many counter reports of over medicalizating, over diagnosing and over treating, some reports claiming that this trend is more dangerous than suspected. This survey of course will provoke the individual stories and experiences of many readers who will seek to make a point based on their personal story or experience. But the dead speak no evil and so again, we only get a slanted view.
What is interesting is that some people delayed seeking a diagnosis for up to five years. Interesting, but how do we classify these people according to today’s “survival” terminology and “survival rate” standard of living for five years after a diagnosis of cancer? Survival terminology conjures images of a person as if they had been concentration camp prisoners with tattoos on their wrists. The word “survivor” is loaded with fear, the same fear as hearing the words, “You have cancer.” Why would we have this fear if early diagnosis and treatment actually consistently were effective? Why do 600,000 Americans with this cellualr dysfunction known as cancer die each year.
Are the people who lived five years without a diagnosis or treatment “survivors”? Are they lucky? Did they survive because they did not receive care that might have killed them?
I was taught to ask who did the study and why? Please visit the Tower website. Its tag starts with “Hope…” and is now involved with 200 cancer volunteers to study drugs, drug combinations, new and redesigned treatment techniques for cancer. Without doing more research that probably means studying radiation, chemotherapy and patented FDA approved prescription drugs. But maybe they are sudying new drugs and other newer diagnostic and treatment techniques. But in any case there is something missing.
I saw nothing that indicated that this Foundation was doing any serious research into primarily prevention of cancer.
I hope that some energy by the Tower Foundation might be directed into new areas of investigation. What we have is not working, is too costly and sometimes is harmful. A new direction is needed if our children are to grow up in hope, not fear.
— healthinfoAnd then some of us, during times when we do have health insurance, do go to the doctors because of odd symptoms, but, as stated above, the symptoms and lurking disease are dismissed or missed altogether.
I am a three-month survivor of squamous cell anal carcinoma, a fairly rare and largely disparaged form of cancer. But, a decade ago I originally went to my GP for the classic signs of something being wrong. Two colonoscopies later, over the course of that decade, and not even hemorrhoids were found. Most commonly, women presenting for this type of cancer are dismissed with the false assertion that hemorrhoids, and not a rare cancer, have been found.
When caught early, this cancer has a high survival rate. When my husband took me to Urgent Care because of symptom severity, a 2.5 cm tumor was found, as well as metastases to a few lymph nodes.
Fortunately, my chemoradiation was successful and I am in remission, but at my staging I have a 50/50 chance of surviving the next five years. Of course, I have to believe I’ll supersede expectations and statistics for sanity’s sake, not to mention for the sake of my fellow survivors. But health care and disease prevention need to be supported for all in this country. Had I had continuous coverage, I might have licked this much earlier and increased my odds.
Now I fear a recurrence and the costs it will leave in my wake. Even with two insurance plans, our medical bills cost as much as a small mortgage. This valuation of a life in a country with such great wealth is simply wrong.
— El EmI fear my sister is in a similar situation right now. She has all the symptoms of endometrial cancer, cancer cells on her pap smear, breakthrough bleeding, all the risk factors (history of obesity, hypertension, family history of colon cancer). Her doctor keeps telling her to come in for a transvaginal ultrasound and a biopsy. But she keeps delaying. Why? Not because she’s stupid. But because she lost her health insurance when she got laid off, and her new job doesn’t include insurance, and for over a year, she has been searching for coverage (the hypertension has been a deal breaker). So now she probably has cancer, no insurance, no money, not even enough to go get the ultrasounds. And she is a professional, highly regarded in her field, with advanced degrees, decades of experience.
Our health care system is wretched.
— TivaMy dear friend visited her doctor repeatedly, complaining of abdominal symptoms. When she expressed worries about the abdominal swelling she got the brush-off: “oh, a woman your age shouldn’t eat after 8:00 PM”. Finally after the third appointment she vehemently insisted that she get X-rays. The X-ray showed ovarian cancer, which, because of the delay in proper diagnosis and treatment, resulted in her untimely death. She left a son who was just entering college.
— anneThis country should be ashamed that with all our wealth we continue to allow people to die to protect the obscene profits of the insurance companies who have successfully blocked universal health insurance.
— SKV#10: Sorry to hear about your sister’s likely endometrial cancer but she IS able to get treatment without insurance or cash ready to hand. I have never heard of a doctor refusing to treat a patient just because payment is an issue, and I have worked in the offices of some of the finest physicians in Beverly Hills, as well as growing up in the medical field.
Every doctor waives fees from time to time and every doc gets other docs to sharply reduce fees for a needy referral. They also know who in the community will be a provider at reduced or no cost.
Further, any town of reasonable size has facilities to take care of needy patients. You may wind up waiting for hours and hours in a clinic, but you WILL be seen and treated. ALL public hospitals take care of the public on a sliding scale and in towns without public hospitals, the private ones perform the same function. It’s why hospitals have fundraisers all the time and need donations to keep programs running.
A friend died of multiple tumors, both brain and stomach, but he was treated with great care and compassion at L.A. County General. Old building without air conditioning, but it was very clean and he was properly bathed, fed and medicated. He didn’t have a penny.
Some people procrastinate by blaming lack of insurance, etc. Press forward anyway. Few people want to face unfortunate facts about their health.
And almost every expense,medical or otherwise, is negotiable.
It was hard to schedule the surgery for a huge benign uterine fibroid - who wants to have a hysterectomy, ya know? - but I was greatly helped by my physician-employer asking me if I had scheduled it. When told no, he gently said “But aren’t you thinking about it all day, every day?” So I had the surgery and that huge benign uterine fibroid was really a huge ovarian cancer.
Now I am a 27-year survivor of ovarian cancer.
Get whatever medical care you need. Payment is negotiable - survival rarely is.
— EssBee, Miracle MileSorry, but I think part of this still lies with the doctors. Last June, my partner had his yearly physical, and the doctor reported that his lungs were clear, his liver was fine, and all his levels were good. Nine weeks ago, after he had turned yellow and could barely stand, the doctor finally said he had metastatic lung cancer that had spread all over his body, and his liver was shutting down. Less than a week later, he was gone. I know some cancers can’t be detected, but jeez, lung cancer isn’t one of them. We barely had time to prepare, and I am still furious at the doctor who told him everything was okay.
Of course, my partner was one to greatly procrastinate when it came to his health. He wouldn’t go into the hospital until he had turned bright yellow (the liver failure). He hated going to the doctor in the first place (he went to 3 of them actually). And I think one of the reasons he went too long without a proper diagnosis was his fear that he would be told he had lung cancer.
Still, it isn’t like he didn’t go to the doctor. And he also regularly saw one of the leading pulmonologists in the City (on Park Avenue) who led him to believe his lung function was just fine. With aid and abetting like that, is it any wonder I blame the doctors, at least in part, for his death? If one of them had actually bothered to do their jobs, he could have been treated. He could still be alive right now.
— Michael#11 and others with abdominal pain:
A huge diagnostic dilemma for which many negative ultrasounds, CT scans, etc have been done.
However, if these symptoms persist more than a month or so, you should go to the doctor, and you can get a doctor’s attention instead of a brush-off if you mention you’re afraid you may have cancer.
Most doctors are good enough to then take a careful history and decide whether a any testing is needed.
— jackRegarding “Back Pain Eludes Perfect Solutions” It amazes me that the Times can publish an article on back pain and omit any mention of chiropractic care. No matter what anyone’s personal opinion is this is a field that has been consistently discriminated against ,yet it continues and continues to help people. You do your readers a disservice and it makes one wonder at the motivation.
— Dr. Jo Eisman#15. Telling the doctor you’re afraid you may have cancer doesn’t always work. My mother had throat cancer more than 25 years ago. When she developed severe hoarseness a couple years ago, she went to the otolaryngologist who told her she was “cancer-phobic”. Months later, she finally got up the nerve to see another doctor, who diagnosed recurring stage III throat cancer.
— MargaretTJ - the American Cancer Society has a list of general symptoms that need follow-up. Symptoms include unexplained weight loss, fever, fatigue, pain, skin changes, change in bowel habits or bladder function, sores that do not heal, unusual bleeding or discharge, thickening or lump in breast or other part of body, indigestion or trouble swallowing, recent change in wart or mole, and nagging cough or hoarseness.
— Lisa“Every doctor waives fees from time to time and every doc gets other docs to sharply reduce fees for a needy referral.”
Essbee#13
Are you sure that everyone can afford the “sharly reduced fees?” I can imagine people who can’t pay thousands/tens of thousands in “sharply reduced fees.”
SKV #12 is absolutely right.
In view of the fact that there is no affordable health care in this rich country, every declaration of “compassional” whatever and religiosity is comical (tragic)
— annato #15:
Oh you’d be surprised and how many doctors don’t jump when you mention you feel you might have a cancer. True I’m only 34 but I always tell them, the only cancer I can’t get is prostate and testicular cancer, because I’m a woman. My relative youth doesn’t preclude me from having cancers just because they ‘normally’ occur to older people. I’ve complained and switched doctors, with the statement that, I have young children at home I’d like to live to raise(barring accident and homicide), and I don’t want to be a victim of undiagnosed cancer just because their bosses are ‘blocking’ them fro testing me for one reason or another. Finally, with enough pushing i got the surgeries I needed, to be sure it wasn’t cancer and they weren’t. But that might not always be the case, and I’d like to find out sooner than later!
The health care system in America is a mess for sure. I don’t know if Universal Health care will make things better, but something has to give. How much does it REALLY cost to just go straight to cancer testing to rule out these things. Other than AIDS it’s (In my mind) the MOST devastating, but usually treatable if found early, diseases, and one I’m more afraid of than anything to have. I can’t imagine it costs more for preventive treatment than to try and sue a patient for payment AFTER they’re diagnosed, on their death bed and having lost insurance(or it’s refusing to pay anymore). And I can’t imagine the insurance companies would be more willing to pay for someone on their death bed than to just help them stay well in the first place. Sheesh.
— ladybeanProcrastination and denial is just the way most patients are.
— MARK KLEIN, M.D.Patients are not only to blame for the lack of timeliness of cancer diagnoses. In the case of bladder cancer, women are correctly diagnosed and referred for treatment to urologists, as much as a year later than men with the same presenting symptom, blood in the urine. Bladder cancer is not a rare cancer– more women are diagnosed [and die of it] than with cervical cancer. Women are educated about getting regular pap smears, and GYNs know to look for cervical cancer. Women do not know enough to get alarmed when they have blood in the toilet, and many doctors flatly think that women do not get this cancer, so there ends up being what amounts to a conspiracy of silence and ignorance. Even when women report it, many GYNs run them through a battery of uterine tests without also considering urinary tract causes for the bleeding at the same time.
Bladder cancer is aggressive, and can rapidly spread to the lymph nodes as it did in my case, 8 years ago. Fortunately, I only lost about 6 weeks once I went to my GYN, and I had to keep pestering that I had the bleeding only when I peed. I was finally referred to an urologist who sent me immediately to a surgeon at a major cancer center. I ended up with 6 months of chemo and then extensive surgery to remove my bladder and create in internal continent reservoir. If I had listened to my GYN and just ignored things once the uterine causes were ruled out, I would be dead by now. I knew something was wrong.
— KarenTara - “There is no one symptom of cancer, but if something new or different is happening, you should talk to your doctor.”
This is neither true nor helpful. Most of us have irregularities in our health all the time. If we ran off to the Dr with each, there would be no health system. On the other hand we can’t because even with top level HMO coverage it takes weeks to get an appointment, you go in with 4 or 5 questions raised over the past 6 months and they shove you out the door after 1. They’re VERY good at it, it’s always to get you bloodwork, or a prescription or referral, and that’s the end of the appointment. Finished or not. The only way to get the Dr back in the room is take him to task which of course only gets their backs up.
Not only that but people need to be educated not to run off to the Dr for x but to do so for y. Which this doesn’t help with at all.
Breast lump, mole changing shape or colour, etc etc a list of symptoms which DO trigger concern even if they are generally harmless. On the other hand I know women who get in a panic if their period is 1 day late (and not because of pregnancy). It seems to have escaped people that our bodies are not robotic machines, they are MEANT to be a little wacky. We need to learn what is within normal wackiness and what isn’t.
I very much doubt the headline reasons had anything to do with delaying treatment. In my experience the lack of access to Drs with time to listen is the main cause.
— JillyFlowerConsidering that the US has an extremely high standard of living, with virtually unlimited possibilities in terms of private consumption, where the squandering of fossil fuel-based energy reigns supreme and military expenditure is astronomical compared to other countries, it is more than morally reprehensible when more than 45 million Americans have practically no health insurance coverage. The divide between rich and poor is becoming ever wider and so far no federal administration has found the strength to pass legislation that would make health insurance coverage not only mandatory for everyone but also affordable. The US has to make up its mind. Do they want to continuing wasting a sizable portion of their income/budget on driving huge gas-guzzling monsters and sending prohibitively costly military machines and men and women to all corners of the earth or do they want to wisely use some of that money to mend a health care system that cares only for those that can afford it. In Germany, we have social medicine and yes, it takes a petty good chunk out of everyone’s paycheck, but nobody here can say they didn’t go to see their doctor because they didn’t have the necessary coverage, because it’s mandatory and everyone is covered.
Of course, private consumption, cars, gas, military power, and many other material and immaterial things are all important factors, but they are all more or less replaceable; a person’s health isn’t. It’s that simple. Health may not be everything, but without it everything is nothing.
— Harald S.Ditto Harald S. What is the point of obsession with personal (financial) responsibility for your health when no insurer gives decent coverage by world standards at any price? I pay thousands of dollars a year for top leve coverage (at least the best coverage my employer will let me have- how’s that for free choice?), yet it still falls short of even the free public system in other OECD countries. Let alone the private insurance available in some of those countries. I used to pay $2000 a year for top private insurance in Australia. That was cheaper than here - and it got me a total free choice of what doctor I saw (no network restrictions), a total free choice of which health fund (not employer chosen) and a private room for any hospital admission where private rooms were available.
Having no public health system doesn’t mean you get better private health insurance, it means the opposite.
Add to that the fact that although there are on average *slightly* higher taxes you don’t have to pay for private health insurance at all.
More than a good trade off. Why hasn’t there been anything on this blog about the need for universal healthcare? It seem to be the root cause of so many problems Tara has identified.
— JillyFlower