Surveillance Imaging is common in Follicular Lymphoma -- CT or PET scans after treatment that are meant to find out whether or not the FL has returned.
They are common, but controversial. With every scan, you get radiation. In fact, a CT scan exposes a patient to about 200 times the radiation of a chest x-ray. The question is, is it worth it? Will the scan catch the cancer before the doctor or patient can? I have read (and I cannot find or remember the source) that about 80% of recurrences of FL come from the patient reporting symptoms, not from routine scans. Is that true?
The ASH presentation "Surveillance Imaging during First-Remission in Follicular Lymphoma Does Not Impact Overall Survival" adds some data to answer that question.
The research involved 148 FL patients who had responded to a first treatment. The were observed for a median period of just under 5 years. Of that group, 55patients then had a relapse, discovered either by a surveillance scan or by clinical examination (the presence of symptoms, an abnormal exam, or by lab findings).
Of those 55 relapses, 35 of them (64%) were detected clinically, and 18 of them (33%)
were asymptomatic but were found during a routine scan. There was no difference in Overall Survival between the two groups.
Breaking things down even more, the researchers looked at all of the scans for the 130 FL patients who had routine scans at their cancer center (including those who didn't relapse). 584 of the scans were part of routine surveillance for patients without any symptoms, with 68 of them for patients who were thought to have relapsed (even though they were asymptomatic). Just 22 of those "concerning" scans showed that there was FL. So only 3.8% (22 out of 584) of the scans for patients who didn't have symptoms resulted in a positive diagnosis.
Their conclusion: Only 1 in 25 scans results in a confirmed diagnosis for Follicular Lymphoma. With no Overall Survival benefit from doing the scans, there has to be some question about whether it's worth it. They recommend a larger study to see if the results can be confirmed.
As a patient, I have a mixed history with scans, but I now firmly believe that if there's no reason to do a scan, they shouldn't be done.
After I finished my Rituxan, I had a PET to confirm the results (this is common and NOT controversial). My dear Dr. R put off doing another scan. At every visit, he'd say, "We could do one, but there's no reason to, so let's hold off. Maybe next time." After about four years, I asked for one. I wanted to satisfy my own curiosity, mainly. It's hard writing about cancer so much and not knowing what exactly is going on inside your own body.
So I had the scan. It confirmed the presence of some FL, but not much. I was satisfied.
A couple of years later, Dr. R moved out of state, and I was switched to Dr. K.
Dr. K had a bad habit of not listening to me. He kind of had a set speech for every visit, and any time I tried to break in ("Yes, I do know what white blood cells are...."), he would steamroll over me. Very frustrating. I don't like it when I'm not being listened to.
So after a couple of visits, he said he wanted to do a PET scan. I asked if there was a concern.
"No, no concern. Just for a baseline. I don't think we'll find anything, to be honest."
"Then why do it?" I asked.
"Just so we can see what's there. I don't think we'll find anything."
"Then why do it?"
We did this a couple more times, and then the visit was over. His assistant noted that Dr. K wanted to schedule a scan.
"I'll get back to you on that."
Dr. K retired before my next appointment. I still haven't gotten the scan he wanted. It made no sense to me to get one when even the doctor didn't think it would find anything, Why take on all of that radiation for no reason?
The evidence from this research certainly seems to show that I was right.
(Oh my gosh, do I love being right!)
I understand the need to want to confirm that things are still OK, and want a clear picture (literally) that they are. It's the same as any kind of watching and waiting -- we're relying on our own understanding of our bodies to make sure everything is, and sometimes it's helpful, emotionally, to have science confirm that understanding. I get it. And I would never judge any Follicular Lymphoma patient for wanting a scan because it makes her feel better. that matters, too.
But, looking at things long-term, we also need to trust that clinical exams will find bad things, and that includes our own self-examination of symptoms.
Don't be bullied into a scan. Get it if it's your choice, and you understand the risks.
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4 comments:
If you are in a clinical trial, the trial protocol dictates which scan the patient must have (PET, CT, MRI,x-ray) and how often. And depending on the patient's particular fNHL and treatment a scan may be needed to determine progression so the next treatment can be identified and started. In my wife's case (aggressive fNHL) she progressed rapidly following R-CHOP, BR, Ibrutinib, and Idelalisib/rituximab. She was getting Idelalisib/rituximab as a bridge to CAR-T. Her oncologist, working in conjunction with NIH used PET scans to determine when to have her CAR-T infusion. She received her CAR-T infusion on March 2, 2016 and remains in complete remission.
Hi Bob, I guess I'm that one in 25 that the scan identifies a relapse in. I am asymtomatic including blood work but my 6 month CT indicated lymph node growth from neck to pelvis. My onc. wanted to do a PET scan next to make sure it had not spread or transformed, I balked at more radiation so we agreed to biopsy a node in the neck first to make sure it was still follicular. It was still fNHL, grade 1&2, some 3A, so it was decided to continue with the W&W and have another CT scan in 6 months to determine if the node growth is progressing. I'm all about having less radiation, my onc. knows this as I complain frequently about having had at least 8 CT scans in my life, I'm 64 yrs., along with yearly mamography, chest xrays, bone density scans, etc. Am I glowing in the dark yet??? I shared recent radiology information that compares the amount of radiation you get from each of the above to daily background radiation with my onc. that a MRI tech. has given to me and she just smiles at it (basically poo pooed it). I know having an MRI would not subject me to radiation and may be more thorough BUT try to get the insurance company to pay for it AND the length of time I'd have to be in that machine having a scan from neck to pelvis would be at least 2 hours! I do understand that she wants to keep tabs on this disease and we did discover it has started up again only by having the scan, but when is the best time to say, "Stop"? Should I just wait until I start having night sweats again, and my spleen enlarges? What do you think "my all knowing cancer nerd" is the best way for someone like me to handle being told I need scans every 6 months?
Shelly
Thanks, William. Your wife's situation is a good example of scans being necessary, particularly during a trial, where there has to be some way of measuring progress. I'm glad to hear that your wife continues to do well. That CAR-T sure seems like magical stuff.
Bob
Hi Shelly.
Boy, you gave me a tough one.
I do think there's a difference between a necessary scan and an unnecessary one. The story I told, about the oncologist who said he didn't have any reason to do a scan, but wanted to do one, is pretty clearly an unnecessary one. there was no objective reason for a scan -- no new nodes had popped up, no changes in my blood counts, no difference in the way I'd been feeling. No reason for it, and the doctor admitted it. If there was a reason, though, I'd have no problem with doing the scan -- it would make me feel better knowing what was going on. I'm not a doctor (as I like to remind people), and while I'm a cancer nerd, I'm sure as heck not "all-knowing" (just ask my wife and kids!). But if it was me, I would be open to a scan if it seemed like it could help catch a problem that might be starting. As I said, a change in blood counts, a node popping up (or a spleen that feels enlarged), or something else that might be a sign of progression.
There's a balance there. You want to avoid unnecessary radiation, but you also don't want to let a symptom go too far without catching it.
It makes me think of some of the people I read on Facebook. They hear horror stories about chemo, so they try everything to avoid it, even some unproven things. And then they just end up getting sicker. The fear of the treatment gets in the way of getting better. Same with the scan -- fear of the radiation could get in the way of finding out there is a problem.
So I guess my best advice is to trust yourself and your doctor. If you sense a problem, tell the doctor and consider the scan. If your doctor is concerned, and has a good reason (and isn't just wanting to do an annual scan for the heck of it) then do the scan. Too much radiation is bad, but there's no magic number of scans that counts as "too much," as helpful as that would be. Communicate with your doctor. Let your feelings be known. And work together. That's what being an informed, empowered patient is all about.
Good luck, Shelly. Hope this helps. Keep us updated.
Bob
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