Cancer Care In The US Has A Long Way To Go It Seems
Saturday, July 28, 2007
Steve Wilkins, Masters in Public Health, Cancer Advocate and Caregiver
What has surprised me, or should I say disturbed me, is how variable the quality of cancer care is in the US among cancer doctors and hospitals. No, let’s call a spade a spade. What has scared me is how bad the quality of cancer care in the US can be at the local hospital level. How else could you explain the comments of Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania who finds that he typically recommends major changes in the treatment plans of 30% to 40% of patients seeking a second opinion, and minor recommended change in an additional 30% of the patients.
An article by Diane Grady in the July 29th issue of the New York Times reminded me how bad the state of affairs really is with respect to cancer care in the US.
I was surprised to find out for example that it has only been within the last two years that cancer experts across the US came together to agree upon standard treatment guidelines for the most common cancer conditions. But having guidelines and getting cancer doctors to agree to not to mention follow the guidelines is an entirely different matter.
Here’s what I mean. According to the New York Times article, “among women with breast cancer, 15 to 25 percent who should have radiation do not receive it, and 20 to 30 percent do not take the anti-estrogen drugs that are a mainstay for most patients.”
But wait, things are even worse for early stage patients diagnosed with one of the most deadly cancers – pancreatic cancer. According to a study released this June by the American College of Surgeons, 38 percent of patients who were eligible for (by treatment guidelines) and could have benefited from surgery were not even offered it by their doctors.
Apparently the same is also true for ovarian cancer. Dr. Barbara Goff, a gynecologic oncologist at the University of Washington in Seattle is quoted in the New York Times article as saying “a third of the women in the United States are not getting the right surgery, not even close…we have so many resources, but we still do so poorly with ovarian cancer.”
I could go one with the statistics. But I think you get the point. Cancer patients and caregivers like me, and many of you, really are on our own when it comes to navigating the cancer care delivery system in the US. Sure my wife finally found the right doctors and the right treatments allowing her to remain cancer free for now. Many of you too hopefully have had similar positive outcome. But I bet that like my wife and I, it probably didn’t come easy for you either. Like us, you no doubt had to fight your local doctors and hospitals to end up where you are today.
What I want to know is why does it have to be this way? Anyone else have an opinion?
6 Comments:
At Tue Jul 31, 01:01:00 PM 2007,
That Girl said…
gI think the world and technology and treatment is moving at a fast pace today and no one can keep up. The internet could help, if docs had the time to read every day. But Im sure the insurance company wouldnt pay for THAT.
I think part of the problem is that medicine has become so different so quickly that society cant keep up. Especially American society. We cant even agree on whether every person deserves healthcare nevermind specifics.
It used to be that docs really did know most everything there was to know - now there's too much to know. You really have to be your own advocate rather than relying on your doctor to know.
At Thu Aug 02, 07:09:00 AM 2007,
Steve said…
Dear That Girl,
Thanks for your feedback. The truth is that all of us need to become like "general contractors" when it comes to our health. We need to be armed with the infomation to know what screening tests we need and when...which types of doctors to see, the right questions to ask and so on.
You are correct in your observation that medicine is changing quickly. For the most part, that's a good thing. The problem is that most of the lifesaving improvements start and stay at the hospitals where they are developed...and take a long time to percolate down to the local community hospital and doctor.
I remember an interesting statistic in grad school - that doctors 55+ years of age started to slow down in their practice and that included not keeping up with the medical literature as often as they used to. Just one more reason to take control of your own health destiny!
Thanks for reading my blog!
At Fri Aug 10, 11:28:00 AM 2007,
laurasf said…
Although I agree that care is uneven, some of the discrepancies listed are due less to the quality of care, and more to the early stage of cancer research.
When I was diagnosed with breast cancer last year, I was given different chemo recommendations by two different oncologists at the same prestigious university.
Both of these doctors are excellent, and both made good cases for their recommendations. Problem is, when it comes to cancer, even common cancers, there is inadequate staging (tests like oncotype DX are a big step forward), conflicting research and very little specificity in treatment (everyone gets hit with the same hammer, even though BC has many subtypes).
Even surgery recommendations vary from physician to physician. For example, some doctors would consider mastectomy for a single small or medium tumor to be overkill, or even butchery. However, some doctors think that with some patients, like those under age 40, it is the best surgery:
http://plasticsurgery101.blogspot.com/search/label/cancer
So, who is right? Is one opinion "incompetent" and the other correct?
As to endocrine therapy, it's been my experience that due to the severity of side effects, which are often minimized by physicians, many women refuse to take the drugs. So if 30% of women aren't taking their tamoxifen, probably many of them due so because of a lack of communication between them and their doctors (who should say: if you don't take these meds, you might die - they are more important than chemo!"), or because they have decided that the risk reduction isn't worth the reduced quality of life.
At Sat Aug 18, 03:26:00 PM 2007,
Anonymous said…
I definitely feel that my family must do all the homework in trying to help my mother eliminate her head and neck cancer. In March of this year, a tumor was removed. We were told it wasn't canercous. Yeah !!! But we need to watch a growth on her vocal chords. Well, in July we were told that chemo would be done. The chemo didn't shrink the tumor but the cancer hasn't spread. Now I'm working on trying to find food that we can syringe and give her for energy. Does anyone know anything about digesting aloe vera (either in gel or juice) for curing cancer?
At Mon Aug 20, 04:33:00 PM 2007,
Anonymous said…
What about rare cancers? It's very difficult to find any information beyond case studies and anecdotal as with rare cancers:
- many go misdiagnosed and so are improperly reported
- often there are only a handful of specialists who treat the cancer, and they do not sahre databases. Even if they wanted to share them, they use different staging methods and nomenclature, they don't collect the same type of information and they catalog the data differently
- there is no pahrmaceutical money behind research, because the demand will never be high enogh to offset costs
- the internet is making it easier for patient advocacy, but most people who find one another are struggling to cope with the disease and are not professionals when it comes to raising public awareness and/or lobbying
I have visited the nord.org, but find it very confusing and of little help. Can anyone advise how to get rare cancers the funding and awareness that will at least lead to adequate physician awareness to lead to proper diagnosis and treatment?
At Wed May 28, 06:39:00 PM 2008,
Anonymous said…
My wife has thyroid cancer has recieved a total thyroidectomy and is about to undergo radioactive iod. therapy the doc. says she has papillary cancer surrounded by follicullar cancer i can't find any info on having both types at once is he lying,ignorant or is it just uncommon and what risks would increase in this case? Anything you can add good or bad is info. i believe that the more we know the better even if it is not easy to hear please help thank you
Post a Comment
<< Home