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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: 1008
Joined: May 2012

Cerato,

Your oncologost's advice regarding scans matches exactly what my oncologist has had me do. I had a differnt type of lymphoma (a very widespread form of stage 3 HL), but after six months of chemo and CR, I have had only one (1) CT  (and one PET) in four years.  I have been getting only extensive blood labs once every six months for about two years now (CBC and Metabolic Profile, with Sedementation Rate and LDH each time).

I do not go to a "big name" oncology hospital, but it does have around 30 oncologists, and is associated with a teaching hospital, and also is linked to US Oncology, which is an affiliation of around 1,000 oncologists nationwide.  I would say that your doctor's advice is very "mainstream" in current practice, based upon what my doctor has explained to me.

max

Cerato
Posts: 18
Joined: Nov 2013

Hi Max,

I posted my response to your message on the other thread with the same subject heading.  

Just putting this here to invite everyone to post on the other thread so all the messages can be in one place.  See you over there!

Warm wishes,

Cerato

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