Why a Top Cancer Center Could Save Your Life (pain, chemotherapy, treatment)
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Why a Top Cancer Center Could Save Your Life : Newsweek Health
The right doctors can make all the difference when it comes to treating cancer. So why don't we know who they are? Published Oct 17, 2009 From the magazine issue dated Oct 26, 2009
What You Don’t Know Might Kill You
Very interesting article on how not all cancer centers are the same. Long article but worth the read. It also says to check if a center follows National Comprehensive Cancer Network (NCCN) guidelines.
Why a Top Cancer Center Could Save Your Life - Newsweek.com (http://tinyurl.com/NewsweekCancer - broken link)
Sussman, then 35, asked her ob-gyn for a referral to the Johns Hopkins Kimmel Cancer Center, near her home in Maryland. She refused: "Girls your age don't get breast cancer," she said, and referred Sussman to a general surgeon at a hospital with no cancer center
That disgusting quack should lose her license. Not just for such a grossly incompetent diagnosis, but such a completely brain-dead mentality. Unbelievable.
Interesting article, thx. PS however: the NCCN guidelines are hardly a be-all/end-all. BELIEVE me. Have found this out first-hand.
I agree about some doctors. My father in law complained about headaches & generally not feeling well after the 50th anniversary party the kids threw them. Around June 2005
My dad was very bad off right before that, was diagnosed with bone cancer. I remember emailing my MIL; she told me the Dr thought it was in his head; his heart was checked, he was fine. We ended up burying my dad 2/4/06; after we got home from the viewing we got a call that my FIL was in the ER they thought he had meningitis; someone mentioned cancer in passing..
My hubby spoke with his sisters who live closer & made sure they found him an oncologist. I don't remember much more then that other then they knew he had cancer in the brain covering & his spinal column & nerves IIRC; they couldn't give a diagnosis; biopsy was then sent to John Hopkins who diagnosed him a day after he passed (end of March 2006).
The original Dr changed specialties & now takes complaints of headaches & not feeling well seriously. She goofed big time.
It's not known whether they could have saved him with treatment; brain cancer is tough; chances are that him living his life those months gave him a better quality of life then if he'd been treated. I'd imagine treating cancer in your nervous system would be radical like my dad's bone cancer.
Catch 22 ,imo. Sometimes at these places there is alot of science going on . Some test are given to see how they work, and man times the students make mistakes even under professors instruction and guidence.
Best thing to do 'imo' ANYWHERE you go is to learn, watch and get involved in your care or your loved ones care .
So far a few very painful mistakes have been made to my brother in stage 4 . This place boast being one of the best . Too mnay cheifs and not enough indians . A dr. for every cancer and they argue what should be done.
Cancer is a monster that nobody really tames . Some are just luckier than others ,imo.
My 81 yr. old MIL has had kidney and breast cancer. Both were treated in a small town , kidney was removed 15yr.s ago , breast alomost 5 yr.s ago . She has a dr. that really cares for her [ not an onconlogist ] ,not a stranger who over sees her care .
Why a Top Cancer Center Could Save Your Life : Newsweek Health
The right doctors can make all the difference when it comes to treating cancer. So why don't we know who they are? Published Oct 17, 2009 From the magazine issue dated Oct 26, 2009
What You Don’t Know Might Kill You
Very interesting article on how not all cancer centers are the same. Long article but worth the read. It also says to check if a center follows National Comprehensive Cancer Network (NCCN) guidelines.
Why a Top Cancer Center Could Save Your Life - Newsweek.com (http://tinyurl.com/NewsweekCancer - broken link)
Excellent article. Thanks for posting the link.
These are merely a few sites that may prove helpful in locating a specialty facility and physician:
Patient communities are valuable resources for not only finding the best care, but dealing with treatment, side effects, insurance, etc. They can be found in Google and Yahoo communities as well as ACOR.
There is no question community Dr.'s don't have the expertise of their compatriots at large facilities, but realistically, that's where people start. Patients need to "listen" to their sixth sense, be their own advocate, and not hesitate to seek secondary or even tertiary opinions.
Creek Hollow wrote, "There is no question community Dr.'s don't have the expertise of their compatriots at large facilities, but realistically, that's where people start."
Actually, many community doctors do have the expertise, but some do not have the resources that the referral centers do. The community doctors are trained by the same medical schools that train the research doctors and some experienced community doctors may do better than some research doctors. A community oncologist will be able to handle the most common cancers very well. It disturbs me to see anecdotal situations used to demean an entire group of doctors. Most would not dismiss the possibility of breast cancer in a 35 year old woman.
The article did not mention that referral centers have access to medications under research protocols that community docs do not. This means that if the research centers get better results, it may be because they are using investigational medications the community docs will not have available. I would be concerned if the research docs did not get better results. It is an apples and oranges situation.
I totally agree that for the unusual tumor, you should go for the gold --- get the best brain surgeon you can, for example. Surgery is still an art, and some surgeons are just more talented than others. And for poor prognosis cancers, getting into a research protocol is advisable. You just have to be aware that you may not be given the research treatment, but you will get the best standard treatment.
I also agree that education is the key. You have to know what to expect. Unfortunately, for many cancers the best treatment in the very best center is unlikely to provide a cure. Another issue is that we do not know how many patients treated at the community level decline care as opposed to those treated at the referral center. For poor prognosis cancers, where treatment may be expensive and delay death only a matter of weeks with a significant risk of severe side effects, it may be easier to arrive at the no treatment option with your local doc than at the referral hospital, where treatment may be more aggressively pursued. You need to find out all you can about your tumor, but be wary of what you read on the internet, including here on CD!
Remember that statistics apply to groups of people, not individuals. And if a community oncologist does not have the volume of a referral center, the outcome of a single case has much more effect on statistics than the same outcome in a larger patient population.
The likely scenario is that a community oncologist will suggest going to a referral center if the patient has something he is not comfortable treating. When my son's pediatrician diagnosed his leukemia, we consulted with the oncologist in our small city about treating him here. There is not a pediatric oncologist in that group, so we went to a university associated pediatric oncology center. When he was on maintenance chemo, the adult oncologist here did it for us.
If you do not live in a city with a large cancer center, you will be faced with the expenses of travel and lost time from work for someone to accompany you. This will not be covered by insurance. This makes it impractical for most people to travel long distances. For my son and me, it was at least 90 minutes each way, if the traffic was not too bad. I made a major change in my career in order to to do this --- we went weekly at first. His course of treatment lasted four years.
If you do go to a referral center, yes there will likely be doctors in training who participate in your care. I have great respect for patients who are willing to allow that, because without those patients, there will be no more great doctors like the neurosurgeon who treated the child mentioned in the article. The presence of the young doctor should not decrease the quality of the care you receive. In fact, that young doctor may be the one with whom you have most contact and provides you with the most information about your care.
If you decide to enroll in a research protocol, one thing to remember is that you can go "off protocol" if it becomes advisable for some reason. That actually happened with my son. Two new medications became available while he was on chemo. One was used to treat nausea. It was so effective that we went from throwing up all the way home after treatment to stopping at his favorite fast food restaurant for a burger to eat on the way home. The second was a drug to help the white blood cell count recover from the treatment more quickly. Since neither of these medications were approved for use on his protocol, he could not be included in the final evaluation of the study, but he still got treated.
It is not necessary for every patient to go to a research center, but there are definitely those who will benefit.
It seems probable that a self-educated oncologist, genuinely on the cuttly-edge would tend to be aggressive in actual treatment beyond mere rhetoric and make use of running pre-tests on a fresh tumor specimen before selecting a chemotherapy option. The self-educated oncologist doesn't submit to the status-quo. They can think for themselves.
Cutting-edge techniques can often provide superior results over tried-and-true "trial-and-error" methods that have been around for many years. Selecting treatments on the basis on tumor biology rather than on remuneration to the treating oncologist is not only good science and good medicine, but good medical economics.
Large academic cancer institutions that are soulfully involved in clinical trials may feel a subtle pull towards getting patients involved in those trials. Some researchers may discourage patient empowerment so they can call the shots through these trials. They've even broaden their appeal by encompassing community hospital oncology practices.
These researchers seem to have a readiness to believe that the clinical trial is more reasonable for the patient and that other options do not offer an advantage. Many of these academic researchers, supported by specialty medical societies and other fraternal organizations, are often paid phenomenal amounts of money for enrolling patients in clinical trials, making financial remuneration a key motivation factor.
There is an inherent conflict of interest when organizations provide guidelines for treating disease who receive funding from corporations that benefit financially from those recommended treatments. There is no proof beyond reasonable doubt for any approach to treatment today. There is only the bias of clinical investigators as a group and as individuals.
I keep holding out hope that clinical level oncology would eventually shift from gatekeeper to integrative medicine, and with that shift, come a more imaginative approach to therapy models and treatment plans.
It seems probable that a self-educated oncologist, genuinely on the cuttly-edge would tend to be aggressive in actual treatment beyond mere rhetoric and make use of running pre-tests on a fresh tumor specimen before selecting a chemotherapy option. The self-educated oncologist doesn't submit to the status-quo. They can think for themselves.
Not every cancer has the option of "running pre-tests." For those tumors that do, the tests had to be developed and validated before they were made available to the community-based oncologist. That validation was likely done in a research center, not by a community doc.
Cutting-edge techniques can often provide superior results over tried-and-true "trial-and-error" methods that have been around for many years. Selecting treatments on the basis on tumor biology rather than on remuneration to the treating oncologist is not only good science and good medicine, but good medical economics.
The "cutting-edge" stuff is goimg to be in the big research centers. I do not know any oncologist who would use "trial and error" in treating cancer. There is research into using tumor biology to guide treatment --- even such things as whether the time of day that a treatment is given makes a difference --- but the community oncologist does not have the resources to do much research, at least in the early phases. Participating in trials at the community level is extremely time consuming, requires additional testing and personnel. Those who do it do not earn a lot of money from it, either.
Large academic cancer institutions that are soulfully involved in clinical trials may feel a subtle pull towards getting patients involved in those trials. Some researchers may discourage patient empowerment so they can call the shots through these trials. They've even broaden their appeal by encompassing community hospital oncology practices.
No one has to participate in a trial who does not wish to do so. It is even possible to start in a trial and drop out --- though that really is discouraged because it makes it harder to get meaningful results. When my son was treated, we were given all the information about the trial before we signed up. Every cancer treatment we have was first developed in some type of research center.
These researchers seem to have a readiness to believe that the clinical trial is more reasonable for the patient and that other options do not offer an advantage. Many of these academic researchers, supported by specialty medical societies and other fraternal organizations, are often paid phenomenal amounts of money for enrolling patients in clinical trials, making financial remuneration a key motivation factor.
The advantage of the clinical trial is the potential acccess to drugs which are still in the early phases of evaluation but which show promise for improving outcomes. The researchers may get what sounds like phenomenal amounts of money, but the money goes to the institution, not the researcher, who is paid a salary that may be far less than s/he could earn in private practice. The motivation for enrolling patients in the trial is to get enough people to determine whether the new drug works and what its risks are. Most big cancer drug trials involve multiple centers, not just in the USA but in other countries, too. And once the drugs get to the community level, the oncologist has a hard time breaking even on chemo drugs administered in the office. They are not raking in money hand over fist on the drugs they use.
There is an inherent conflict of interest when organizations provide guidelines for treating disease who receive funding from corporations that benefit financially from those recommended treatments. There is no proof beyond reasonable doubt for any approach to treatment today. There is only the bias of clinical investigators as a group and as individuals.
No doctor is going to recommend a treatment that doesn't work. No, there are no guarantees that a treatment will work, but the recommended treatment will be based on the best clinical evidence available at the time. As more research is done, the evidence changes and the treatment changes.
I keep holding out hope that clinical level oncology would eventually shift from gatekeeper to integrative medicine, and with that shift, come a more imaginative approach to therapy models and treatment plans.
I would not categorize oncologists as gatekeepers. They are on the front lines when it comes to treating cancer. I do not know what you mean by "integrative medicine", but most community hospitals have "tumor conferences," where patient histories are presented, and everyone has input, from the pathologist who makes the diagnosis and presents the laboratory findings to the surgeon, the oncologist, and the family doc. Most patients are probably never aware that this conference took place --- there is no bill for it! --- but it helps insure that everyone knows what the game plan is for that patient.
With respect to therapy for cancer, there is not much room for "an imaginative approach to therapy models and treatment plans". Most of the drugs are used in combinations that have been finely tuned. The risks, including lethal risks are great. Get too "imaginative" and you may kill your patient!
"Finally tune" is not in the vocabulary of most medical oncologists. Cancer medicine involves a lot of trial-and-error (or best guestimate). We have produced an entire generation of investigators in clinical oncology who believe that the only valid form of clinical research is to perform well-designed, prospective, randomized trials in which patients are randomized to receive one empiric drug combination versus another empiric drug combination.
The problem is not with using the prospective, randomized trial as a research instrument. The problem comes from applying this time and resource-consuming instrument to address hypotheses of trivial importance (i.e. do most cancers prefer Pepsi or Coke?). There are hundreds of different therapeutic drug regimens out there, any one or in combination can help cancer patients. The system is overloaded with drugs and underloaded with wisdom and expertise for using them.
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