New research from the journal Cancer, looking at whether FL patients should get scans after their first successful treatment, to try to detect if the cancer has returned. The short answer -- no, scans aren't necessary.
This is an issue that I care a lot about, and I think it's worth getting into here.
First, a story. As many of you know, I've seen a bunch of different oncologists over my time with FL. They've been good and bad, but I think the one that upset me most was a soon-to-be-retiring doctor who didn't listen to me and, worse, wanted me to get a PET scan without having a reason to get one. We had a small "discussion" about it, ending with him insisting I make an appointment with his assistant, and me telling the assistant that I wasn't making the appointment.
I understand the impulse. The last time I got a scan, it was because I wanted one. I hadn't been scanned in a few years, and I wanted to see what was going on in my body, if anything. My beloved Dr. R was good about it, and made the appointment for me. The scan showed nothing. It was a lot of radiation in my body when I didn't need it, and I haven't had a scan since.
In the last few years, more research has shown that scans aren't really necessary for this purpose. Let me be clear about that -- scans are great tools when someone is diagnosed, to help stage the disease. And they are great immediately after treatment, to see how well the treatment worked. But for a "surveillance scan," just kind of taking a look around inside? They aren't helpful. Research presented at ASH in 2017 said so, and more research presented at ASCO in 2019 said the same thing.
The current research, in an article called "Surveillance imaging during first remission in follicular lymphoma does not impact overall survival," says the same thing.
Researchers looked back at patients from two cancer centers who had a response to their first treatment. They then looked at how many of those patients relapsed, and at how the relapse was detected -- by a scan or because of "clinical concerns" like a blood test, or a physical exam, or just having the patient say something felt unusual. In one group, 55 out of the 148 relapsed, and then 35 of the 55 (64% of them) were detected clinically, rather than from a scan. In the other group, 177 patients relapsed, and 63 of them (54%) were detected clinically.
In addition, there was no difference in Overall Survival between the groups.
So, to sum it up -- more patients who relapse have their cancer detected by clinical means than by a scan, and whichever method is used to detect, it doesn't affect how long the patients live. So, for patients who have Follicular Lymphoma and had successful treatment, getting scans to try to figure out if the cancer has returned (when there are no other signs that it has) is ineffective at best, and might be expensive and harmful at worst.
Like I said, I certainly understand why people want to get them. We live with so much uncertainty as Follicular Lymphoma patients, and a scan provides some certainty, even if it tells us that nothing is there. I get it.
But if more patients have their relapse detected by noticing that something is wrong, and then letting an oncologist know so it can be tested, then it seems like the better way to do things is to trust ourselves to know our own bodies, and insist that our doctors do the same.
I'm glad you are posting this.
ReplyDeleteI am confused and concerned about which indicators show when you NEED treatment, first treatment or subsequent.
Here's what happened to me. I had a biopsy of an enlarged lymph node with a "calcification" attached, found from a scan to find kidney stones (I had a stone "medium"). The biopsy showed: Follicular Lymphoma.
Given battery of tests, blood, scan, bone biopsy, etc. the usual drill. When results were in called in for meeting with the Onc.
He suggested I become a "watch and wait" and that he would see me in "three months."
I was happy(ish) puppy and went home.
At 5PM - same day - got an unexpected phone call from Onc. Apparently his 3 month decision was based on ALL the test and Scan BUT had not included the bone marrow biopsy - the results of which did not reach the Onc until after our meeting earlier that day.
He told me "Earlier today I did not have your bone marrow results. I have them now and they show your bone marrow is 95% infected with lymphoma."
I was to begin treatment the NEXT day and I was to get R&B. At 7 AM next morning I showed up and the Onc was there with a new plan. Because my bone marrow was 95% infected there was "a mathematical chance" that R&B might kill all your healthy B-cells. In addition he was afraid that I might get a cytokine storm and die. Eventually, and still, I survive, five years later.
BUT - my bone marrow was 95% infected and ALL the other tests combined without the bone marrow biopsy showed I was a 3 month watch and wait.
SO - seriously, how useful is a "Scan" - or the other tests? How much more diseased can you get than a 95% infected bone marrow????
I was diagnosed over ten years ago with follicular lymphoma and have been on watch and wait ever since, without any treatment. As I am still asymptomatic, with no clinical signs of progression and my annual blood tests perfectly normal, I have not had a scan for several years and my haematologist says there is no need.
ReplyDeleteAt my next annual check up my haematologist/oncologist said they might consider discharging me. Presumably on the basis that after nearly eleven years, unless I notice any symptoms, my annual check no longer serves any clinical benefit, but causes a lot of anxiety leading up to the appointment.
I have often wondered what percentage of untreated follicular lymphoma patients stay on long term watch and wait. Apparently some for over thirty years!
Hey Bob
ReplyDeleteMy wife (74) was diagnosed in 2011; she has had 7 treatments so far. In all but one of her relapses, progression was found by a PET scan vice symptoms.
BTW yesterday she had a 1-year NIH ViPOR checkup - she is still in remission!!!
William
Looking at all three of these comments, I can't help but think (or maybe re-affirm) how strange our cancer is. It takes on so many forms, from slow-growing to very aggressive, and with a range of treatments that work for some and not for others, and a range of diagnostic testing tat works for some and not for others. As great as it is that we have a pretty good bunch of treatments available, more and more I think research needs to be focused on biomarkers, so we have a better idea of which treatments work for which patients. It's not as sexy or as interesting as reporting on clinical trials, where we can see the name of a treatment and guess how long it will be until it is available. But it's so important. And I'm guilty of not giving it as much attention as I should.
ReplyDeleteMyLegacy, I have no idea why the plan changed so much for you. Maybe the grade was low enough that the onc felt it wouldn't spread quickly, and you could hold off? despite all of the weirdness, I guess he was right in his decision.
Anonymous, I have wondered the same thing -- how long people can watch and wait. We'll never know for sure, but I think there are probably a few people out there who had FL at 40 (like me) and who never had it diagnosed -- until they were in their 60's. That's 20-25 years of unofficial watching and waiting right there. I do remember a story from my onc, years ago, about a patient that he saw once a year. He had been diagnosed with FL 30 years before, had successful treatment, and retired to the Bahamas. He came back to the New York area once a year for a check-up, to see some Broadway shows, and then go back to the Bahamas. I've always kept that in mind as a life goal.
William, thanks, as always, for the update. I'm so glad to hear the ViPOR is doing the job. I need to write about it more sometime.
Thanks, all. Remember that scans are one tool among many. They are helpful sometimes, but not necessary all the time. Talk to your doc. Ask questions and let your worries be known.
Bob
Hello Bob,
ReplyDeletethis time I partially agree, let me explain, I agree that PET-CT or CT are not the main way (in percentage) to detect a relapse and they expose us to unnecessary radiation to assess our FL.
When we do NOT do a scan, we do it to save more radiation and avoid long-term leukemia, for example. And why not say it, they are very expensive, especially PET.
Even so, there is another variable in our cancer, second neoplasms, which account for more than 10% of the death of FL patients. Thanks to these scans, in search of a relapse, many second neoplasms are found, in some initial stages, increasing our chances of survival scandalously, in my humble opinion, and evaluating in a global way, I am in favor of scanning by risk / benefit long-term.
It would be paradoxical, how much less, than trying to avoid a second neoplasm, masking another cancer.
Of course, in patients who have not received chemotherapy, the benefit is no longer so clear to me.
Thanks for your blog!
Raul
I was wondering what do we define as "responded to treatment"? Seems that my husband, who had 3 scans so far during his first treatment has a partial remission - there are still some tumors left mainly in stomach and pelvis- albeit smaller in number and sizes, and we suspect they will stop, and not do all 8 cycles but 6 (O+CVP) and then continue maintanance with O for two years.
ReplyDeleteWe were shocked when they asked for a third scan, only after he did second, and less then two months in between - to find out that his neck (which at the beggining had visible nodes) was never scanned before. Thankfully, his neck is clear.
So,my question is - how often is partial remission and can maintanance help shrink them more or just keep them as is and help not grow?
The scans - have no clue why they didnt scan it before now.
Hi Anonymous. Not sure why they wouldn't scan the neck, since it's a common area for lymphoma to show up in. I remember my onc ordering an "eyes to thighs" scan for me after treatment, which would have covered everyplace I had some lymphoma when I was diagnosed.
ReplyDeleteAs for the partial remission, I think it happens a lot (it's what has happened with me). Maintenance is usually given for full or almost full remission, with the idea that it helps to maintain that remission by cleaning up any small bits of cancer that are hiding or left over. My understanding (again, I'm not a doctor) is that sometimes after partial remission, the doc will order "salvage" treatment, meant to clean up any leftover cancer. So, it accomplishes the same thing as maintenance, but I think the different terms reflect different states -- maintenance is less aggressive (like just Rituxan or Obinituzumab) and salvage is a little more aggressive, though not as aggressive as chemo (like maybe an inhibitor). "Responding to treatment" can mean any degree of response, from full remission to just a little remission, and the follow-up is determined by how much cancer is left, and how aggressive it is.
Hope that answers some questions.
Bob
Thank you so much Bob, I already wrote to you when my husband had a previous scan, about pet and regular scan if you recall. No clue why they didnt scan the neck. It seems that since they said to book the last scan on 23 of June which would mean being late for 7th O+CVP, they have already pretty much decided he is due for maintenance, just wanted to check the neck. How both of us missed that they didnt scan the neck is beyond me! He had a lump, visible, on his neck. He doesnt have it for a long time now and scan confirms it.
ReplyDeleteAlso, he had some lumps in his tigh, now not palpable but as I read your reply I realized they never scanned his leggs either!
I really, really dont like that in my country we have to not only educate ourselves but also be cautious of the teams dilligance.
At least they use Obinituzumab and have it in stock at the moment (institutions have issues with obtaining drugs and still do).
On Friday his case will be presented and as per one of the doctors she expects since it's been more than 2 months since his treatmeant, he will be put on maintenance.
The lack of communication is just so frustrating, and to think that this institution is not even as bad regarding that is even worse.
Thank you as always for your information and kind response!
Ivana