Any alternatives to PET scan?

Hi Bill,

First off, I do not hold a medical degree, nor am I an NLPHL patient.

That being said, and having, like yourself, an indolent form of lymphoma, I can relate to your concern with cumulative irradiation - especially if you still have a life expectancy of decades.

1) You may want to consider that, NLPHL being relatively uncommon, it is possible that there is not "standard" for monitoring patients such as yourself.

2) As I understand it, you are "entitled" to a certain rate of irradiation yearly, so a PET once or twice a year should not be a problem. Last year, however, due to concerning symptoms, I had multiple x-rays, CT and PET scans, and my hematologist opted to switch to a chest x-ray and an abdominal ultrasonography (instead of a CT scan with contrast plus an MRI with contrast) for one of my regular follow-ups, in order not to further increase my total irradiation dose. So, I gather it is possible to some extend to have ultrasound exams in lieu of other, irradiating tests. I would point out, though, that ultrasounds will show structural changes in organs and lymph nodes, but may not reach the deeper layers - so, any abnormal lymph nodes deep down behind your bowels and near your spine might escape scrutiny altogether.

3) Also, NLPHL is prone to transformation into an aggressive form of lymphoma, and I would speculate that your doctor's choice of PET scans to monitor your disease is in relation to that risk. A PET scan is the most likely imaging technique to pick up any increased metabolic activity.

I would encourage you to discuss this with your doctor in order to get more definite answers than whatever speculations I have got to offer!

PBL

(Primary Bone Follicular Lymphoma, Dx 01/2016 - 6xR-CHOP21 03-06/2016 - Maintenance Rituximab 08/2016-04/2018 - Currently in remission)

illead said:

wish I knew

or maybe not. My Bill gets them every 6 mos. also used to be just catscans but since he relapsed a 3rd time it's pets. It's disconcerting but he's staying alive.  Yours sound excessive to me since you have been a long time NED, but I'm no expert either.  I did want to say hello to an old friend, for those of you who don't know Bill, he is one of our fond past members.  Hope you are doing well and having a happy life. (besides Covid of course).

Becky

about this very subject. He said that the most radiation is 1). normal x-rays 2). PET and 3) CT.  Generally the PET scan is both a radioactive injection plus a CT scan. The radioactive injection is passively monitored and followed by a CT scan which is used to show precise location of any glowing activity detected from the injection. So with a PET you get the injection plus a CT scan. Old fashion X-Rays are the most dangerous because the techs job is much easier if they crank up the power. They tend to crank it up to get a clear picture. Of course this is just a good ole boy's non-professional opinion. Well, at least the old part is correct.

Bill, I recall several things about your treatment history.  First, treatment worked well and got you straight into NED.  Second, you were always worried and having doubts.   It seems #2 has not changed, although our worry as survivors is normal and to be expected.  This was aggrevated (inevitably) by the scar[e] you had in 2018, which you mentioned above.

You have had more PETS in a short period of time than I can recall anyone here ever documenting.   We do not have the competence to question this, but I would do as you were advised above, and ask the doctor about it. 

Most likely, your doctor is wanting to be very diligent to watch for recurrence.  Certainly he is aware of the benefit/risk formula regarding diagnostic radiation. 

I am delighted to hear from you again, old friend, but I wish it were for you to report that all is wonderful for you.  Of course, you have no evidence of cancer, so maybe everythign IS wonderful,

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