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Advise about scans while in remission

Cerato
Posts: 18
Joined: Nov 2013
Hi everyone,
 
I saw my oncologist yesterday.  She reaffirmed my status as complete remission -- yay -- and then surprised me by telling me that I don't need to have any further scans.  I was really surprised to hear that.  I asked her about it and she told me that the latest best practice for my type of cancer - dlbcl/double hit and very aggressive; I had 6 rounds of R-EPOCH and a stem cell transplant -- is to have a physical exam and blood work every 3 months for the first year - with the consideration of a scan at 6 months; but from her point of view, the 6 month scan isn't necessary.  Then continued follow up clinical exams (and bloodwork?) for years 2-5.  Keeping an eye out for symptoms and then responding if they should appear is apparently the way to go.  She told me that with the aggressiveness of double hit lymphoma, symptoms will be noticeable without a scan; if I notice any symptoms between visits I should go in to see her.  
 
I was taken aback as I expected that I would be getting regular scans for some length of time while in remission. So I asked her again, and she told me that scans complicate the issue as they show all kinds of changes -- including changes that may or may not be related to the lymphoma.  After thinking about it, I assume she meant that there was no way to distinguish between some of these changes, so you get false positives.
 
When I got home, I checked online to see how her opinion lined up with others, and it appears that others agree.  The author of this article shares her opinion.  See pg 8-9.
 
This article is from a 2012 European conference and the conclusion also concurs with my oncologist's opinion.
 
What I gather from these articles is that it is critical to be certain that there has been a relapse or reoccurrence before taking any action and that a scan won't necessarily provide the information you need so you wait for symptoms to appear.  
 
I have to admit that this worries me.  I have only ever heard of some form of regular scanning while in the first year or two of remission.  I have never heard of or talked to anyone who has had cancer and not had to deal with scanxiety.  I don't know which is worse -- scanxiety or anxiety due to lack of regular scanning to confirm remission status.  
 
Has anyone here been advised to follow this protocol in the early stages of remission?  I'd really appreciate any feedback you might have about this.  Maybe this protocol is quite common and I just haven't heard of it?
 
Thanks so much, everyone.
 
Warmest wishes to all.
Cerato

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1046
Joined: May 2012

Cerato,

I submitted a response to this, and then it "Went Away," and is not currently on the thread, so I am posting agin.  If you end up with a dozen responses to me, it is not my fault !

What I shared is that my oncologist and the group that he is associated with is doing (in many cases, not all) exactly what your oncologist is recommending regarding post-CR scans.  I have had only one PET and only one CT since going into CR around four years ago.  I receive a complete CBC and Metabolic Profile each six months, which is what I have been receiving for around two years now.  Next year I will begin getting these labs once yearly.

max

Cerato
Posts: 18
Joined: Nov 2013

Hi Max,

Oh, the dreaded double posting shenanigans! ;)

Thanks for taking the time to post - twice!  Your other post shows up on the other thread at my end, and I assume that others can see it, too, just in case you're curious.  Lol.

I really appreciate you letting me know about your oncologist's recommendation and your follow up schedule post CR.  If I remember reading correctly from your other post, you have a form of Hodgkins (slow growing) rather than Non-Hodgkins DCLB, and in my case, double hit (very aggressive) lymphoma.  

First of all, I am relieved to hear that what my onc has suggested is considered mainstream.  Very relieved.  And, on the other hand, I still have a query about whether or not this non-scanning protocol is common follow up for people with more aggressive lymphomas. 

If anyone has an aggressive lymphoma and has reached remission, I would really appreciate knowing what you post CR follow ups look like.  

Thanks again, Max, and congratulations on your 4 year remission!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1046
Joined: May 2012

My neighbor whom I mentioned earlier had a very aggressive form of NHL.  I believe his med was hyper-CVAD, and he had to be hospitalized for all infusions.  He DID receive a few more CTs after going into remission than I did, so there may be some difference between indolent verses aggressive disease.   I suspect that it boils down to the doctor's own professional judgement.  I have heard that some things affecting how likely lymphoma is to recur are (1) the strain, (2) how readily the disease responded to treatment, (3) whether "B" symptoms were manifested by the patient before treatment, and (4) a few lab results prior to treatment (but I forget exactly which of these are considered most predictive). 

But, all of this is very general, and may or may not come into play for any specific, given patient. I guess I would just discuss it with the doc in some detail.

And, my neighbor is now over 5 years in C.R., despite a very rough ride during treatment.

max

LaurieKW
Posts: 11
Joined: Sep 2013

my primary oncologist told me the same thing last month. He said that data presented at a conferenice (ASCO, I think) indicated that only approx 8% of recurrences are detected via PTscan plus exposure to radiation.  I have been in remission from DLBCL since November and finished my last cycle 6 total)  in january.  

Hope this info helps

 

Laurie KW

Cerato
Posts: 18
Joined: Nov 2013

Max and Laurie,

Max: thanks for posting again with the new info!

Laurie: thanks so much for letting me know about your personal experience with scans.  Congrats on the remission ;)

I feel much more relaxed now, having heard from both of you.  

Warmest wishes to both of you! 

Cerato

Rocquie's picture
Rocquie
Posts: 487
Joined: Mar 2013

Greetings Cerato,

A PET scan 9 months ago revealed that my Lymphoma was in remission. I had 2 more rounds of R-CHOP after that but no further scans. My Doctor does not feel any scans are necessary for me at this time and I agree. There are a few reasons for this. I am having CBC and metabolic blood tests every other month; my lymphoma markers show no sign of relapse. I was extremely symptomatic prior to my original diagnosis and I have remained symptom-free since remission. Last but not least, I am on Rituxan maintenance.

Of course my disease is very different from yours. My Doctor nor I believe in excessive exposure to radiation. (A CT scan commonly uses about 500 times the radiation of a common xray).

HOWEVER, my Doctor has told me that at any time, if I would feel reassured, he would order a scan. If YOU feel you need a scan, if you would feel more confident, by all means discuss it with your Doctor.

Best,

Rocquie

 

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