PET CT: Is it necessary to have fresh PET CT... - CLL Support

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PET CT

Supratim profile image
5 Replies

Is it necessary to have fresh PET CT scan before start of your treatment? I have done the scan in Feb this year. My doctor wants to start treatment as my neck n armpits has large swelling. Any advice.

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Supratim profile image
Supratim
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5 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

Why a PET/CT? CT scans are usually adequate in CLL. A scan is a good idea before treatment , but discuss why they want the PET.

The iwCLL Guidelines 2018 state

3.5.2.3. Other imaging methods. Except in patients with proven or suspected Richter transformation, positron emission tomography (PET) scans do not provide information that is useful in the management of CLL.86 Similarly, nuclear magnetic resonance imaging generally does not provide useful information beyond that of CT scanning in the management of CLL and therefore is not recommended outside of clinical trials.

bloodjournal.org/content/13...

In a patient with SLL, very enlarged nodes or if transformation might be expected then PET would wise, but generally a CT is all that is needed...

Before treatment you should get a second opinion from a CLL specialist as well...

~chris

HopeME profile image
HopeME in reply to Cllcanada

Perhaps a PET scan is being requested due to markers that might indicate transformation is possible. For instance Trisomy 12? Could it be to rule the possibility of transformation out?

Ironj profile image
Ironj

I’m no expert but I will share what my Dr told me. I had a pet ct scan about a week ago Just as a Baseline in the event I ever needed treatment. Your Dr may want to compare the February Pet with this new one to see if other areas pop up. Again I’m sure you’ll get much better answers from other members. I’ve never had treatment and am on watch and monitor. Best wishes John

DMary profile image
DMary

I'm in treatment in a clinical trial and I've never had a Pet scan. I echo those saying it would be helpful to ask why the doctor what he/she hopes to learn from it, and to seek a second opinion from a CLL specialist before starting any treatment.

Best wishes for finding the right course for you. We're all so very different...

Lola69 profile image
Lola69

I only had a PET scan when I relapsed locally from FCR I have SLL. Being the needle biopsy of neck node was 7cm they thought it might be a RS And proceeded with a PET scan. I cried as I was hoping for a longer remission from FCR but grateful to be on imbruvica

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