This topic comes from an interesting source. I'm not entirely sure what it is, but it looks to me like a podcast or a video of a podcast called "Ask the Doc." And it looks like it is sponsored by an oncology practice called Georgia Cancer Specialists, which is affiliated with Northside Hospital Cancer Institute. (If anyone out there knows this show, and goes to this practice, I'd like to hear).
The video features two doctors (and a host) who seem to take questions from listeners/viewers about cancer. This broadcast features a question about Follicular Lymphoma. (It comes about 12 minutes int the video.)
The question comes from from someone whose mom was diagnosed with Follicular Lymphoma 7 years ago. She had chemo and then two years of maintenance. She had follow-up scans for 5 years, and then was not given any more scans. Her daughter, who asked the question, wanted to know why her mom wasn't getting any more scans.
The answer was interesting. The oncologist (seated on the right; the doctor on the left apparently isn't an oncologist) talked about how some practices can "handcuff" a doctor. In this case, the thing that is keeping the scans from happening is the insurance company. In the United States, as many of you know, most people have private health insurance, and the company that pays the bills usually has to approve tests and treatments. So on this podcast, the oncologist was blaming the insurance company for not approving the scan. NCCN guidelines say that scans should be given for 5 years, and then, if there are no clinical signs that would make the scans necessary (like a swollen node or a problem with blood work), then no scan is needed, so the insurance company won't pay for it.
(The doctor showed the NCCN guidelines he was referring to. Unfortunately, he showed the Diffuse Large B Cell Lymphoma guidelines, which do indeed say that scans should be given for 5 years, and then only if "clinically indicated." But this was a question about Follicular Lymphoma. The NCCN FL guidelines say scans should be given for 2 years for FL, and then no more than annually. Seems like a difference that matters here.)
What followed was about 15 minutes of discussion of insurance companies, Covid-19 restrictions, and some other issues that weren't really related to the question. (The doctors have very strong opinions on a number of things that are related to medicine, but are not necessarily medical opinions.) The doctors do seem to agree, however, that Covid vaccines are very important, and everyone should get one.
What they didn't discuss was recent research that suggests that scans aren't helpful in detecting a recurrence of lymphoma. In other words, "surveillance scans," as they are called, that are given just for the heck of it, are not as useful at detecting whether lymphoma has returned as a blood test, or even as a patient sensing that something is wrong. They do, however, cost money, and also result in health costs, since they introduce more radiation into the patient's body without necessarily providing any good information.
It was interesting to watch, and it confirmed for me some important things.
First, if you're able, I think it's important to consider a second opinion for major decisions about cancer. And it should be from a lymphoma specialist. That's not to say that first opinions are always wrong. But I do remember seeing Dr. C, a lymphoma specialist, a few days after I was diagnosed, and him telling me that if you had 10 oncologists look at a patient's record, they'll have 11 opinions.
In other words, especially in FL, where there's no one "right" answer, it's good to hear several opinions. You might hear something that's a little bit more "right" than the first one.
Second, I think it's really important for patients to educate themselves. That's no surprise to anyone reading this. I'm not an oncologist, or any type of medical doctor, or even a biologist. You shouldn't take medical advice from me, or anyone else online who isn't a doctor. What I hope I can do is give you enough information to know which questions to ask when you do see your doctor. And you can't really know without having some background knowledge. If someone I loved wasn't getting a scan and I thought they should, I'd want to know if it was an insurance payment issue, or a medical issue. That difference matters.
The internet is a fascinating place, with lots of wonderful information, and lots of bad information, too. I hope you'll keep reading carefully and learning what you can, so you a better idea of which is which.
5 comments:
In our country there are only two pet scans - the rest are multislice scans. And you have to pay for them because the backlog in state instututions is very long (fortunately they are not more then 280 € when done in private medical facilities). However, I see research that pet scan is superior to multislice one. Do you have any info on that that might be pertinent? There is no chance that my husband can get pet scan within a month with such backlog and will do regular one, since he has to do follow up after his initial scan (also done out of pocket). He soon finishing third cycle of obinutuzumab - cvp protocole and they want to see how it's going. We do feel very fortunate that he is receiving obinutuzumab considering it's fairly new and it's covered by universal healthcare so far.
Hi there.
Yes, it's great that he's getting coverage for obinutuzumab. I think that says something about how much trust your healthcare system has in it.
Pet scans can be more useful than multislice scans in a lot of ways, but if the purpose is to check on how well the treatment is working while he is in the middle of the treatment, then the multislice is probably fine. It will show how much the nodes (or other areas with cancer cells) are shrinking, and so you'll know the treatment is working. PET scans become more useful after treatment is done. Since the areas with cancer cells will show up on the scan by glowing, the PET would be helpful after treatment is done, because it could help give a sense of whether any cancer cells remain, and he could follow up with maintenance or with a new, different treatment. So maybe their plan is to do a PET after the O-CVP is done? Or maybe ask if that's something that you could do, and you'd have more time to schedule it soon?
I hope things go well for your husband with the treatment. Please let us know how the multislice goes.
Bob
Dear Bob;
Thanks for pointing out this 'seminar' by some Northside hospital staff in Atlanta. It disturbs me that physicians of all stripes have come to rely on radiation scanners to diagnose and surveil medical conditions. It is implied from your comments that the oncologist felt he/she was hindered by the insurance companies from practicing appropriate medicine. As a FL survivor, 6+ years in durable remission, I challenge my oncologist on the number of CT scan I receive and have delayed or eliminated several. (we had an exchange a year or so ago about this)
Some background: In college (50 years ago) I was a chemistry major and have kept in contact with my classmates, many of whom are physicians (mostly retired now). I followed a PhD degree in chemistry. They routinely tell me that the modern practice of medicine relies too much on high tech scanners for simple diagnoses. As a medical safety issue, patients are exposed to needless amounts of radiation which generally manifest itself many years after exposure. However, the economics of modern medicine dictate scanners be utilized to near 100 capacity to maximize revenue and to avoid perceived malpractice lawsuits.
Unfortunately, patients are not aware of the costs, alternative procedures, and to the long term effects of radiation from a CT and especially PET/CT scans. Patients routinely express to their physicians that they want a scan and they are accommodated. Insurance companies are blamed by everyone when they try to limit the number of marginally useful scans as a cost saver for an over utilized technology. I suggest the link to a New Yorker article several years ago that touches on this issue:
www.newyorker.com/magazine/2009/06/01/the-cost-conundrum
I do not know the answer to this conundrum. As you have always suggested an educated patient is the best thing. But as my personal experience has shown, an anxious newly diagnosed patient who is read a figurative riot act of possible side effects of treatment options may not really be able to make a rational judgment.
Hey Bob, thanks for your reply! Yes, that's a good idea, to ask if we could book pet for the future as this is, as you correctly put - middle of the treatment check up. He has nodes in a lot of places and 25 percent of bone marrow is affected.
He managed to book mutlislice through universal health care and conclusion is that there are signs of regression in both size and number of nodes. Just got the reaults.
So we shall see what his specialists decide but I figure they will continue woth the same combo due to the radiologist concluaion. Btw, I tried to reply 3 times a week a go, with a longer post but it juat wouldn't post it.
Many thanks for your feedback again and big hug from Serbia!
Sorry for the typos x!
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