Am I Going to Die?
Will I die from this? Probably not. Even though I lack capital, I have decent educational and social resources.
I cannot help noticing that safeguarding my own life requires a far different energy from that which went into saving my child’s life. Is this not a major theme of women’s lives, sacrificing their own health and well being to protect that of their children?
Is this not the message of Breast Cancer Awareness Month? For once, put yourself first. Insist on good care. Don’t be too late, not with a potential cancer.
Will the woman who lacks my resources die from these circumstances? If she is as tough as my waitress friend, probably not. If she is as passive and outgunned as the women in the waiting room at the free clinic seemed to be, your guess.
What I Know for Sure
Oprah poses the question What do you know for sure? in the October issue of O Magazine.
This is what I know for sure: The spin cycle of medical referrals for suspected cancers is a black hole, particularly for women/single parents. Radiologists, the near invisible specialists in this cycle, do not take nearly enough responsibility for results.
The spin of local referrals may be potentially lethal for patients, but the ineptitude therein — borne of what, cost saving measures? — may pale in comparison to the black hole that is interdepartmental communication at major medical centers.
This I also know for sure. The American Cancer Society and the Lance Armstrong Foundation are asleep at the wheel about what it takes to beat one’s way through the system, even as Armstrong’s autobiography documents the near superhuman effort (and wealth, and connections) necessary to secure best practices on a cancer diagnosis.
Second opinions as well as clear-cut information about patients’ rights to the same are NOT profitable for insurance companies — certainly not as profitable as the “wait and see” stance that could have gotten Sheryl Crow killed had she not trusted her instincts.
Arrogance plays a role. To wit, it is nearly impossible to predict which physician will view a request for a second opinion as insult. AMA protests to the contrary, the patient feedback loop appears to be nearly nonexistent. AMA leaders have learned nothing from the new e-medicine. The patient leaves the office, and the doctor is out.
In a free market system such as ours, the much vaunted “war on cancer” dedicated to saving lives unnecessarily lost to the disease is at heart hypocritical. Decrease in mortality rates over the last few decades is due primarily to improved systems for screening, i.e., early detection, not to the (far more lucrative) clinical trials and pharmaceutical research that have hijacked the system. The PR offensive of the latter, however, has been such that most patients cannot think through this fact. The implications are too frightening.
Most of all, I know that nobody’s looking — not even Oprah — as every year American women fall silent victim to the spin cycle.
Yes, women over 40 with average risk factors should get a yearly mammogram, but what next? Breast Cancer Awareness Month is over.
These stories actually make me wonder what exactly is going to happen to the cost of health care when patients are able to over-ride doctors opinions and demand excessive tests like this. In both cases they were just worried women and extrapolating one or two case studies to everyone is so very dangerous. We didn’t go to medical school so why should we now be expected to second guess the doctors? I really seriously doubt that they would defer any tests that were the least bit useful since that is who they make money.. Procedures.
You are correct, we are not doctors; however, if we as patients, if we as parents, don’t push, if we don’t question, sometimes, people die … sometimes children die.
My son went misdiagnosed/undiagnosed for 6 months. I kept questioning the doctors, asking the doctors for referrals, further testing, etc., to no avail. I finally had to take my 5 year old son to another city entirely for a doctor to conduct the proper tests. After almost 6 months of wrong diagnoses, no diagnosis, my son was finally diagnosed with a rare form of cancer known as Ewing Sarcoma.
His entire right pelvic bone had been affected — front to back, top to bottom. Had he been diagnosed earlier, the tumor would have been much smaller, much easier to resect. My son had almost his entire pelvic bone removed, a year of inpatient chemotherapy, and many, many complications. We are extremely fortunate, as he is still here, against the odds, five years later. But, his road is no easy one. The extensive surgery leaves him with chronic pain, gait difficulties and scoliosis. The chemotherapy left him with hearing loss and cardiomyopathy, a permanent, progressive, incurable, heart condition.
So, no we are not doctors, but sometimes we have to be the squeaky wheel … sometimes patients are the exception, rather than the norm, and sometimes we have to override doctors’ opinions to save lives.
As owner of, and member of, pediatric/adult sarcoma support groups I read horror stories of, wrongly diagnosed sarcomas almost on a daily basis. Very often a 2nd or 3rd opinion would save a lot of heartbreak.I know of a very large sarcoma facilitity that will no longer give 2nd opnions to adult sarcoma patients. This is shameful…..patients have to be pro-active and to push, push, push until they get the correct information.Then most have to push some more to get their insurance cos to pay for it.
1. My GP finally chimed in. After studying the reports and going over the films, she recommended follow-up with a surgeon.
2. A right to a second opinion exists because …. ? A second opinion is part of patient’s rights. To whom would you deny that right?
3. The group of “worried women” is quite large, including New York Times health columnist Jane Brody. And no, we didn’t just “extrapolate one or two cases . . . ” See my my blog on Gina Kolata’s article on M.R.I.’s that aren’t for the Eilber & Eilber article on best practices for suspected cancers.
4. The HMO makes the money by keeping the case inside network.
5. In a similar situation, you would …. ?
Sarcomas are almost literally the 100th DIAGNOSTIC possibility out of 100. Are you recommending that we just let that patient die?
6. Is there a middle road for folks whose loved ones have been the “zebra” in the pack of horses (When you hear hoofbeats, you think ….)?
7. To save money and lives, follow best practices.
“Question: When is a request for a second opinion on a suspected cancer an
“overreaction”?
Do you just give in and trust the doc?”
ANSWER:
NEVER, NEVER, NEVER is it inappropriate or unacceptable, and certainly not an overreaction, to ask for a 2nd opinion!!! (or more than 2 some times) In fact, it is recommended! ESPECIALLY when it comes to Sarcoma! I am mostly involved with the Osteo-sarcoma List on ACOR…and our Drs. on the list all agree that 2nd opinions are most often necessary! Sarcoma is a difficult disease/cancer to diagnose… let alone what TYPE of sarcoma it is.
How it is treated can be totally different from type to type of Sarcoma…let alone from other regular cancers. In fact, a Sarcoma center usually has a Sarcoma Team. There is someone to handle each phase of the disease or treatment.
This didn’t happen to us. We were told by a Orthopedic Oncologist surgeon that our Shannon had Osteosarcoma. He operated and replaced her leg with a titanium prosthesis, inside. He did a good job and she healed well. Even learned to golf! But that is where her care ended. She was never given chemo or radiation. Only an X-ray ea. 6 months of her chest/lungs.
After 3 years, metastisis appeared in her lungs. We were told to find our own surgeon for this…who did a sternotomy..the same as open heart surgery more or less…and removed 13 Osteo nodules from both lungs. then we were told to find our own Oncologist to arrange for some high dose chemo. If you can believe it…we hit the phone book! Didn’t know anyone else who had chemo to recommend someone.
To make another long 3 year story short.. she ended up having an overdose of Ifosphomide to which they had FORGOTTEN to add the bladder/kidney protectant Mesna and she ended up in a coma for 3 1/2 days. None of the chemos that were used on her had worked…perhaps they never would have. But we would have loved to have had the chance or choice to try them had the right Dr. been in charge. AT A SARCOMA CLINIC..BY A SARCOMA DR. & TEAM!!!
When our beautiful daughter died in Hospice, she had at least 14 new tumors all over her body. Had she had a 2nd opinion in the first place, would this have happened? We’ll never know..but would have loved to know there was a choice!
We have so many who have originally been mis-diagnosed and thus, mis-treated…until they finally got 2nd or 3rd opinions. Some are still with us, others were not so fortunate.
Patient pro-activity? Most definitely!! There may be a few cases where it would not be recommended, but if a person is a member of this group, or any other like it, and becomes well informed, they certainly MUST be proactive! If your Doctor does NOT agree, please, find another Dr.
Also, if you have a Dr. who refuses to ask advice from any other specialist, run…don’t walk…to a new Dr. And definitely, if you or your loved one has Sarcoma, find a Sarcoma specialist or Sarcoma Center right away! Just ask us and we’ll let you know where they are.
Well, that’s my 5 cents worth… (Used to be 2 cents worth—inflation!)
Pat… Mom to Angel Shannon. (We took our Drs. words for everything…didn’t know about Sarcoma Centers or specialists) and now she is an Angel…forever… 31 yrs. old.Not only we, and her husband, but her daughter misses her so much!
GET A SECOND OPINION!
When is a request for a second opinion an overreaction ? NEVER !!!
If I had trusted the first doctor we ever saw when my daughter went in complaining of pain in the knee , my daughter would probably not be so fortunate today. The first doctor did not do x-rays and insisted on physical therapy but I was not happy with it and I went to another doctor who took an x-ray right then and there and saw something strange. We were then sent for an MRI fast and that’s when my daughter was suspected to have osteosarcoma. Fortunately for us we searched for a sarcoma especialized doctor and we found a sarcoma center within a two hour drive which coincidentally our friend’s son was also being treated by them.
My daughter had a biopsy and the specimen was sent to the Mayo clinic for a second opinion which confirmed osteosarcoma but if there had been any doubts I would not have a problem getting a second opinion regardless of what any doctor or insurance company may say.
Thankfully we were not left out hanging to dry with this , our doctors have been very knowledgeable and willing to explain what they were doing and why but at the same time they also knew that if they did not do this I would insist demanding the reasons why they wanted to do the specific treatment.
I had a doctor in the past that always taught me when you have doubts , you push for answers and that always stuck with me …..I am sure it saved my daughter’s life.
My advice to any parent facing this is don’t bother with what anyone thinks….always push for answers!!!
Pat said it best, nameley “NEVER, NEVER, NEVER is it inappropriate or unacceptable, and certainly not an overreaction, to ask for a 2nd opinion!!! (or more than 2 sometimes) In fact, it is recommended!” IMHO, doctors who are afraid of having INFORMED CONSUMERS as their patients are the ones we should most fear. The doctors who won’t collaborate and learn are the ones who will not open their minds and thereby often will miss the best treatments for their patients.
I am here today because I sought out first a second, and then a third opinion. I will never apologize to anyone (let alone a doctor whose feelings are hurt because I didn’t trust her or his judgment), for becoming an informed consumer and playing an active role in my own treatment. At the end of the day, the doctors go home for the night. We, on the other hand, live or die based on the decisions they make. And I would never trust anyone who tried to stop me from taking ALL steps to make sure they make the right ones.
“Informed consumers”…….I love it, Mark.
It’s what we are! There is more info out here today and some Drs. are aware of that…maybe a little intimidated themselves. But a GOOD physician will not be, and will be willing to do what it takes to make his patient well, if at all possible…even if that means asking someone who may have more experience with the problem! THAT is a good Dr. And as for being proactive with your care.. YOU BET! Anyone ever read about the number of folks who die each year because of medical error?
To Patients aren’t Doctors –
First, thanks for joining the conversation here. We need more active discussion, from many points of view.
Before concluding “these were just worried women” I implore you to read the e-patient white paper at the top of our blog. When I read it in January it changed my whole view of healthcare. (Mind you, I myself didn’t have an adverse event like Christine describes – I was diagnosed promptly and my treatment was fast and potent.)
And please read Christine’s earlier posts – search for her name in the search box.
Jennifer,
> “we are not doctors, but sometimes we have to be the squeaky wheel”
Oo, you get an Eppy Award for that one! (And I’m so VERY glad to hear your son’s doing well.)
Returning to the central question of referrals:
Seven months ago I wrote that Serial Referral Delays Are Harm, and should be measured and tracked as such by those who are monitoring and reinventing healthcare.
Excerpts:
Anybody agree?
As I’ve begun studying the world of healthcare this year, I’ve found increasingly that there’s actually no good reason for this. Best Care Anywhere documents at some length that a big reason our system is kept at capacity is, that’s the only way to keep billings up – due in part to the way provider and user (doctor and patient) are kept economically separated by the stinking stupid payment system, in which rates are set with no connection between buyer and seller. The system designers meant well but it’s become utterly dysfunctional.
This is a screwed-up, tangled-up, messed-up system that in general accepts no responsibility at all for ensuring that the job gets done, i.e. that you and I get the care we need.
I’ve started openly asserting that if the mess is so unsolvable, maybe we should start building something of our own, completely outside the establishment. I don’t know what form it’ll take but I do know that serial referral delays are harm, and they are just one symptom of the larger mess.
Note: from what I’ve heard, the mess is just as frustrating to good doctors as it is to patients.
Another comment … I agree that doctors who discourage second opinions should be run from. Once we finally had a diagnosis for our son, I could not have been happier with the oncologist who treated him. And, this oncologist strongly encouraged us to seek other opinions — especially when it came to “local control” issues. The doctor even asked for our permission to send our son’s scans to other doctors for second/third/etc. opinions. We had already done so, as well.
These are the doctors I trust — those who know they are not God & realize they don’t know the answers to everything.
My first opinion couldn’t figure it out after a battery of tests.
My second opinion said my daughter was “healthy” and insinuated in her egotistical condisending tone that I might be an over reacting first time mom. (even though there was a visible mass in her leg along with other symptoms)
I believed her.
She was wrong.
Two months later I insisted on an MRI. A month later I got one and 2 weeks after that I was told my daughter had stage 3 rhabdomyosarcoma.
I watched her tumor grow into stage 3. Over months because I believed the doctor.
Thank god my first stop was mskcc. After a quick diagnosis they offered to assist us with further opinions if we chose.
They are like my second family and god forbid we leave the sanctuary of remission, those doctors wouldn’t hesitate to send my daughters records out for second, third and fourth opinions.
I think some of you who have commented are right…some of the lesser doctors are probably intimidated by those of us who question.
I will never allow myself to go against my gut instincts again.
I live everyday with the knowledge that my daughter could have and can die from my previous mistake.
I will do anything necessary to keep that from happening.
Dave,
I checked out your “serial referrals” after I wrote the piece. You are entirely correct.
We need some standard language “My care is being delayed” but it has to have legal weight.
The trouble is, within an HMO or in a so-called “free” clinic, I don’t think you have legal redress.
In the end, the insurance company paid for my friend’s FNA at the major medical center but left her hanging on the Core Needle Biopsy.
I almost don’t have to finish the story for the pros here: Should her tumor have been malignant, meaning she would almost certainly have died given the location, the company WOULD have paid.
The whole process took a huge toll on the family, as each member, at various times, started to turn on her for being worried, for disrupting the household, etc. My daughter got VERY angry at me, also, when we didn’t could certainty on the diagnosis. Why couldn’t I just accept the fact that it was benign?
People were on me, Why don’t you know? When will you know? Why can’t they tell you?” because this whole scenario, and the disruptions entailed, are just mind-boggling.
I would very much like to hear from breast cancer patients about the “microcalcifications” issue. Sarcomas we KNOW require every bit of “niche” expertise imaginable.
One of the above folks is right: You should get as many opinions as you think are smart. Any doc who doesn’t respect second opinions concerning a suspected cancer should not be in the profession. In my experience, the best docs didn’t mind second opinions. Minor league, yes.
And, as the sarcoma community knows, once a fatal error has been made, there are no apologies.
In the end, they go home at the end of the day and we live or die.
So the standard would be: A year from now, will I be kicking myself if I don’t take action.
And, as SHP would say, should everything turn out to be okay, we can always have a Stupid Party. Thank God I was so stupid!
Christine,
I think the time has come to shift the focus for a moment.
A couple of weeks ago I spoke at a dinner along with Phillip Longman, author of Best Care Anywhere: Why VA Health Care Is Better Than Yours. It’s a gripping story spanning thirty years, in a book that’s just 136 pages long and could be read on a Saturday. I’ve been “synposizing” it on my blog, starting here.
There are many factors in their success in quality measures and patient safety, but a central one is that they had a patient for life, so there was every incentive for early detection and no incentive to hope the problem would move to a different insurer. So the VA got very good at it, resulting in far less critical care, more effective automation, fewer errors and better care.
I say “had” a patient for life because under the Bush administration, for some insane reason, they changed that rule, totally dissing our veterans by making them prove a problem was service-related.
One might think this was to cut government costs, but the insane thing is that veterans were then forced to move to Medicare (private medicine), where care is worse and government costs are higher!
The inevitable result is a lengthy appeals process and lawsuits, further increasing costs and stressing the veterans and their families. Insane.
Anyway: if our insurers “had us for life,” I think they might have greater interest in catching things early and being sure they had the right diagnosis in the first place.
for anyone dealing w/any medical situation, memorize and repeat to yourself the below steps … perhaps even give a copy to your doctor’s office? !!
Seven Steps to Survive
by Jeff Belkora, March 6, 2006
Seven steps to survive a high stakes situation, such as a serious medical diagnosis:
1. Face the facts – Everyone has a fight, flight or freeze reaction when confronted with danger. You need a lot of courage to harness your emotions and face the threat directly, and realistically. In the past, you may have denied there was a problem, delayed taking action, fled the scene. No more. The first step is to name the type of situation you’re in, recognizing what’s at stake and how much time you have.
2. Take charge (own it) – Your life or livelihood is at stake. Your health or wealth is at risk. Wouldn’t it be great if you didn’t have to worry? If your doctor/spouse/boss/friend could protect you and defend you and make everything turn out right? Think about it for a second though. It’s your life that is on the line. Who owns your life? You do. Take responsibility for your response to whatever situation you face, no matter how much you may need and deserve a miracle out of thin air. Previously, you indulged in wishful thinking about someone else solving the problem for you. Now, you declare yourself your own guardian angel, white knight in shining armor, and miracle maker.
3. Stop the train – Your first job as officer in charge of your situation is to call time out. In a high-stakes situation, other people tend to start moving. Their motion usually leads towards their goals, which may not be yours. Previously, you went along. Now, you’ll stop the momentum and reassess.
4. Pick your team – You can take charge, but that’s not to say you must deal with a high stakes situation alone. Find help. But notice that finding help is different from waiting for help to find you. The kind of help that finds you may not be what you need. Before, you were grateful for whoever showed up – now you will figure out who is best suited to help you, and go get them on board.
5. Use your resources and do your homework – We all have different resources. Some have a lot at their fingertips, others face barriers. Barriers are unfair and dangerous. If you’re poor, or marginalized, or the victim of discrimination, you face additional burdens. Anyone, though, can make the most of what they have. You need to take stock of your resources, and then use them. All of them. If you’re among the poor, downtrodden, and forgotten, you will need to use some of your resources simply to overcome barriers that others don’t even face. Again, this is unfair. Before, you might have given up, or engaged in self-pity about your plight. Now, you make a list of resources, and a plan for using them effectively to do your homework. Doing your homework means figuring out what the world has to teach you about your high stakes situation. Usually, you will learn that you have some choices to make.
6. Decide and conquer – As the leader in charge of your high stakes situation, you will respond. Your response will usually involve choosing between different alternatives. You can’t control the future, but you can play the odds. You know the difference between a good bet and a bad bet, and how to make smart bets.
7. Follow through – now you’ve got the train rolling on your tracks. Trains do get derailed and you’d better not come unglued. Back to step 1 if the train gets off track. You face the facts, take charge, stop the train, pick your team, use your resources/do your homework, divide and conquer, and follow through.
My 22 month old son first presented with constipation. I took him to the local hospital who gave him an over the counter enema & sent us home. 6 hours later, still in excrutiating pain, I took him to the local Children’s hospital. Within 2 hours they found the cause – a 5/1 cm tumor rhabdomyosarcoma, blocking his rectum. We were admitted immediately & began treatment within days. After 42 weeks of chemo & 28 days of radiation, we finally achieved NED (no evidence of disease). Then almost 3 months to the day, we learned he again had a 3 cm tumor in the same spot. The recommendation this time was heavy chemo & removal of his bladder & prostate (which is where the tumor attached). Not only did we ask about a 2nd opinion, our team of drs encouraged it, reached out to friends of theirs in the field, spoke multiple times with the drs that 2 opinions were requested of. They promised in the beginning to treat my son as if he were their own. And when I informed them that my desire for a 2nd opinion was not a reflection on my confidence in them, they assured me that they were not insulted & appreciated my dedication to my son.
When is a request for a 2nd opinion an over-reation??? NEVER! And as stated before, the doctor that feels that way, should be left in your dust!
50% of women over 50 have breast microcalcifications, 80% of which are benign!
1:5 chance of malignancy
Excellent! Why worry?
I have another little addendum to this conversation. Has to do with Mother’s Intuitions. When one of my children was a little baby, only 5 weeks old, I could tell something was wrong with her. She didn’t have a fever, but had little appetite, and cried every time I changed her diaper. NO rash. I called the pediatrician..who knew me since this was the 4th child of mine he had taken care of since birth. He told me that as a Mother of 4, I should recognize she just had a little cold. I told him there was something more than a cold wrong with her, but I couldn’t put my finger on it. I ended up taking her to the ER in the middle of the night. They couldn’t find a thing wrong with her. She was very tiny…having been an early 8 month baby, and only weighed about 6 pounds. My pediatrician came in…looked at her, saw her temp was near normal, but noticed she was a little pale for such an early baby. I kept insisting that they run some tests…they started with blood work from her tiny little heal..found lots of white cells. Next, they did a spinal tap on that tiny spinal cord! Guess what? SPINAL MENENGITIS!! Without a high fever. They started IV’s with anti biotics and fluids. The next day, the Dr. said to me…”I think she looks a lot better, don’t you?” I told him absolutely not…she’s looking worse. Ended up having to have a neurosurgeon rushed in to tap her brain to relieve the build up of spinal fluid that was so full of infection (puss)it was building up in there. Had I not told him I thought she was worse, she would probably have died. The next day, he brought 6 young interns into her room, told them to read her records, and then told them.. “Let this be a lesson to all of you to always trust a Mother’s intuition”! Boy, was I s proud Mommy!
That daughter of mine is now a healthy 41 year old woman! Just wanted to mention that Mother’s Intuitions count for something. I wish I had done more for our youngest daughter, Shannon, though..and had more intuitions about her Osteosarcoma.
I believe when it comes to a question of your health, especially when there is a result that may indicate cancer, one must be proactive. To wait 6 months for a follow-up is excessive. I had a questionable mammo, I had an ultrasound, and a referral to a surgeon for consult, and I am considered “low risk” for breast cancer. I am lucky to have a doctor that is very thorough, but I would have insisted on it+ had not been offered, and I would certainly not wait 6 months. Better to spend a few more health dollars to put your mind at ease, than to end up finding out you should not have waited. Does your insurance company offer a case manager for situations like this? I belong to an HMO, and this is a service they do offer, and surprizingly, they do advocate for the patient.
Good Luck! Do what you need to do to put your concerns to rest.
In the grand scheme of things, a second opinion is really CHEAPER for the insurance company as well as better for the patient…in the big picture, it’s what “preventive medicine” is all about: catch a problem early, before it becomes severe and requires even MORE invasive treatment.
Over 20 yrs ago, a friend of mine had a hysterectomy–her insurance co. INSISTED she get a second opinion first…the company had enough sense to know that it was worth the $50 investment (doc visit costs then) to ensure it was worth their while to pay for the surgery.
I work in healthcare and am also the parent of a pediatric cancer survivor. I’ve seen some big egos at work…I would not choose them to be my physicians. But I was most impressed with the physicians who cared for my son, who had the guts to admit they did not know everything. Any doc who says, “I’m not sure; let me get a colleague in to look too” earns my respect, and my business.
Finally, it is simply patronizing to dismiss a patient’s concerns. How does any physician know with absolute certainty what I feel in my body? Even with all the technology we now have, lab results have a margin of error, scans can be blurry, “standard of care” for a condition can vary from one facility to another.
Besides, who’s the one paying for the insurance? In any other business, “the customer is always right.” Why are we letting ourselves be controlled by the insurance companies when they should be serving us?
Amazing! All rights to second opinions are not created equal. In fact, the opposite.
My daughter’s certified case manager sent me the link to California law on second opinions, but rights to a second opinion vary by insurance and by state. This is critical knowledge for e-patients. I’ve seen folks on the sarcoma list struggle over this again and again.
One question is what are the consequences for violation of this policy by health care clinics? According to my reading of the law, the “free” clinic is in clear violation, and the radiologist may be evasive on this issue or resistant himself.
Here is the site: http://law.onecle.com/california/health/1383.15.html
Yo tengo dolor de cabesa! (This is giving me a headache!) This is critical information for e-patient communities.
Right now I am going to take care of my health. When I’ve got the micro-calcification cleared up, I’m getting a politician.
Chris
The regional director of the Every Woman Counts cancer detection program called to help. In response to my questions about how the clinic docs could refuse a second opinion out of hand when it is both funded and legally mandated under this program, she said I was the FIRST PATIENT ever in her experience to ask for one.
Gilles talks about the great divide in information and education among various segments of the population. This is a very sad. As I have mentioned previously, I suspect that the doctor:patient divide is also a gender divide.
This person was HAPPY that I was educated about my condition. She promised to read Jane Brody’s article and to consider the broader implications — whether the clinic physicians were putting their patients’ lives at risk.